SaraJane's Adventures

Happy New Year...A bit late or is it? My journey with Chiari

2012-01-20T16:27:00.004-05:00

Most people celebrate the new year January 1st. The new year is an opportunity to begin anew and to move forward and accomplish dreams or tasks you have set your sights on. Well, I am 20 days late by most standards, but for me my new year begins January 20. January 20, 2011 I had brain surgery. A surgery which changed my life.

A doctor recognized the "Invisible" condition that I had and was willing to help me. By that time, I was becoming debilitated with headaches that were constant and daily. Even the strongest narcotics did not touch them. The chronic pain in my body was constant and felt as though I had run a marathon even though I had not been able to run since November of 2010. I had to be careful how I would walk down stairs because if I led with my right leg there was a good chance I would fall down them. If the ground was uneven or if I had walked too much my right leg would often catch any bit of ground that was in its way. At work I would be carrying things in my right hand and all of a sudden, for seemingly no reason, I would drop it. I will never forget the first time it happened. I had just finished emptying a patients urine bag. I was carrying the container of urine with my right hand when it just released and the entire container of urine spread across the floor.

My memory, which has always been one for remembering things in great detail, began to fail me. I would put something down one second and the next I could not remember where I had put it. I would look at people I knew for years and I absolutely could not remember there names. My roommate and others around me would watch me searching for things frantically because I was so forgetful. My frustration grew and I found myself becoming angry at my forgetfulness.

Even my internal organs were beginning to be affected. It came to the point where the doctors were evaluating whether I should begin straight cathing myself in order to release the urine in my bladder. I had lost the sensation to go and I had a difficult time starting. Some times for weeks on end I could not eat because I was so nauseous and for no apparent reason. I began to have my eye sight affected and for a few years I had been losing my hearing for no apparent reason.

I went from being active and running marathons to barely getting through work each day. I would come home and either go to sleep or rest in the lazy boy chair. I had no energy and I no longer wanted to feel the pain that consumed me. Only those closest to me did I let my guard down. Many people would say that I "appeared" normal. But I mostly found myself staying home and attempting to hide my true symptoms. I was tired of hearing people say, "you seem fine!" That is like saying to someone with cancer, "you don't look sick!" Not always do people wear there symptoms on their sleeves, and not always are the symptoms obvious.

I was born with two rare conditions. Chiari Malformation which is a herniation of the Cerebellar tonsils (part of the brain) into the spinal canal. And Ehlors Danlos Syndrome a rare connective tissue disorder that affects everything from the skin inward to the heart. Both of these conditions are not well known by many doctors and so many times they would say what I was feeling was psychological. Often people with Chiari go misdiagnosed for 10 to 20 years if they are ever truly diagnosed. The herniation causes many problems but 2 of them are the fact that the Cerebral spinal fluid cannot flow freely through the brain and spinal areas and thus causing the headaches from pooling of the fluid in the brain. The other problem is that the herniation puts pressure on the nerves running through the area which affects every part of your body, hence the seemingly random symptoms.

When I went to the neurologist, she said to me, "I believe your symptoms are real, I can see in my neurological tests there is a problem, but your symptoms seem to be scattered and not focused so it is tough for me to pin point what is causing them." We both had Multiple sclerosis at the forefront of our minds, as many of my symptoms mimicked that. However, when they did the MRI I had no plaque on the brain, the tale tale sign of M.S., but I did have a 3-4mm herniation of the brain (It later grew to 5mm and when the surgeon finally did surgery he said it was even more than that). That was when we clued into the Chiari. She and I both felt very confident that was the cause of my symptoms and therefore we moved forward to a surgeon. I knew the ONLY possible cure was surgery and so I told my family that that was what I was going to have to do. Little did I know that I would go to so many of the best Neurosurgeons in the world and have them tell me that I was crazy to think the herniation was the cause of my problem. They all said it was M.S. When I would tell them I didn't have the plaque they said, yeah but you have the symptoms. It took me more than a year to finally find a doctor that understood Chiari. My first appointment was more than 6 hours long and was super detailed. He answered any question I had and was so thorough I walked out of there with my head spinning but finally feeling like someone understood me.

Every Neurosurgeon I spoke with about the Chiari Institute told me they were "hacks", and to be careful because all they want to do is surgery. Yet when I asked them what solutions they had for me they honestly could not give me an answer. I finally had to begin to look at the statistics, which showed they had the lowest complication rate, and the highest success rate in the country. I chose them over another neurosurgeon even though it potentially could cost me 50-100,000 even with insurance (By God's grace it ended up being minimal cost compared to what we expected).

January 20, 2011 I went in for surgery unknowing what the outcome would be. At best I may completely improve or I could even get worse. For me I had come to the point that I was worsening so quickly that I would rather try to fix it and hopefully get better than not do anything at all which was already hopeless. They shaved the back of my head from top to bottom and from side to side. The had two incisions that formed a T. They opened the back of my skull and shaved part of my first vertebrae in order to access the brain and spinal area. They had to open the dura and they used a special procedure that most doctors don't do (but is part of there high success rate) in which they cause the cerebellar tonsils to pull back up into the skull. They then close the dura and the skull with patches leaving the space larger than it was to begin with.

When I woke up, I was my usual combative self. I don't seem to handle anesthesia very well :-). I woke up in my room and had wires connected everywhere to me. No one was with me but I knew my mom, friend Carmen, and my brother were supposed to be there. I yelled out for the nurse and she came in saying she was trying to contact them. For some reason the only number I could remember was Sean's. She called him and he said he was 15 min away. I had a clock directly in front of me and I began counting down the minutes. 15 min came and went and I was yelling for them to come in again. By time they all arrived, I was firing everyone of them. I was so confused and uncomfortable. I remember saying once I calmed down, "my head is so clear, I can see. Look I can read that sign." My brother kept telling me to not get ahead of myself. But even though I had just had major surgery and the pain was intense. I could feel a difference both in my head and in my body. There was a clarity that I can't explain. It was like I had been in a fog all those years and the fog had just lifted.

They say it takes a year to see the full results and also to see if the surgery may potentially relapse. Today is exactly one year. They had no idea how much improvement I would have. They knew the headaches would go away but as far as all the problems from the nerves being pinched, that was uncertain because no one knew if they were permanently damaged. I can tell you today that not only are the headaches gone, but my sight and my hearing have improved, and all but the muscle pain has gone away. I have gained control of my right side which was one of the least likely to return.

So for many, they celebrate the New Year January 1st. For me my new year began January 20, 2011. I was given the chance at life again with less pain and less problems. I believe that God has a purpose in everything. He had a purpose in moving me to NJ, 40 min away from the only Chiari Institute in the world. He had a purpose in having me purchase disability insurance before I was diagnosed (When it seem to make no sense). He had a purpose in me dealing with the pain and difficult symptoms...now I can relate to my patients in a way many people can't. He had a purpose in me having Chiari and finding such significant healing. Now I desire to help others understand the condition, specifically doctors, so that others don't have to suffer. Many believe that many of the patients who are diagnosed with M.S. (with scans that show no plaque on the brain) actually have Chiari. The earlier people are diagnosed, the more likely the surgery will heal them. I have shared a few times on this blog my experience with Chiari and I have been contacted by people who I don't even know who have dealt with similar experience but have not found treatment. Last time I met with Dr. Bolognese he said to me, "I hope you can share your story of healing so that others can benefit from it. I can tell the medical community all day long that things need to change in diagnosing these patients, but the person they will listen to is you."

I don't know what this looks like moving forward, but I know that it is part of my mission in life. God allowed me this struggle and has given me a platform to speak from. I only hope that as each new year, January 20th, comes and goes that I will make a difference in some small way in how chiari is looked at and treated.

My lesson I learned from God this past year is He never gives us more than we can handle, and in His word He promises never to leave or forsake us. The lesson I am beginning to learn this new year is that those who seek Him with all of their heart will find Him. He is not hidden but we won't find Him passively. He wants a real relationship with us, and it is up to us to to take His hand and walk forward.

Storm has passed....

2011-08-28T16:33:00.002-04:00

But the winds seem stronger now than yesterday and this morning. My windows are rattling and sound like they are about to explode. Very interesting. They are saying we are still getting Tropical force gusts.

Today I walked with my family through the town of Nutley and saw the very heavy flooding that has gone through the town. It was crazy to see a raging river flowing through where a beautiful park usually winds through the town.

We have survived this one now we are waiting to see if the next one that is forming will head our way as some are trying to say.

The Eye of the storm!

2011-08-28T08:54:00.003-04:00

I lost power most of the night and morning. It just popped back on for a short time so wanted to post a quick update. We have received a TON of rain. Our road that is not in the normal flood zone is a river. The Eye of the storm is expected to pass over in the next hour and then we have the back side. Manhattan has been breached and water is beginning to flood as well as the opposite Jersey side in Hoboken.

Last night the storm rocked my 3rd floor apartment most of the night. Right now as the eye of the storm comes near it is ironic that the weather is becoming calmer. I have never been in the eye of a hurricane nor have I been near any hurricane before. But friends who have say that the eye of the storm is this beautiful quiet, calm weather. The problem they say is that the back end of the storm has to pass. So I used this slight lol to get the dog to go to the bathroom and now I am back inside secure for the next round.

Hurricane Irene heading our way...

2011-08-27T22:59:00.002-04:00

Hurricane Irene made landfall today in North Carolina as a Category 1 storm. Usually these storms usually weaken significantly over land but this one is so large (480+ miles wide) that it is holding its shape and its strength. The outer bands are pelting us now with heavy rain. The winds are beginning to pick up now but the eye of the storm is not expected to arrive over NYC till tomorrow morning around 8 or 9am.

They have evacuated the entire Jersey Shore as well as areas along long Island as well as much of NY city. Earlier this evening they added parts of Jersey City, Newark and all of Hoboken which are all along the Hudson river between NY and NJ.

We are looking to be in for quite a ride.

Hurricane Irene

2011-08-26T20:49:00.003-04:00

Hurricane Irene is moving ever so slowly up the eastern seaboard. The current track has it being a direct hit to New York city. One meteorologist explained that it is more than 400 miles wide and that the hurricane forced winds extend at least 90 miles from the eye of the storm. This means that the area I live in will likely experience hurricane forced winds.

There is not a single flashlight or D and C batteries on any shelf. Nor is there much water left on the shelves. Mandatory evacuations have occurred along the shore, NYC will shut down mostly tomorrow through Sunday. We are unsure whether this will be a hurricane 1 or 2 but with the amount of rain we have had of late and the route this is taking they are predicting this to be a very destructive storm.

I am hunkered down in my apartment and ready to ride it out in my new apartment. If I don't lose power I will plan to keep my blog updated.

Much love from NJ

Life in the ER

2011-08-26T20:46:00.002-04:00

This week I started my new job at a Trauma ER in Paterson, NJ. This ER is rough and tumble with psych patients, inmates, serious trauma incidence, and gang violence. We are awaiting our move over to the brand new ER that will double us in size.

So far I am only in training and it is a slow time. But I have had the opportunities to see some interesting stuff. I look forward to this new experience.

Last day

2011-08-20T12:41:00.003-04:00

Today, is my last day as a regular Valley Hospital Employee. At 11:30pm I will walk out the doors and move onto the next step in my career path. More than 3 1/2 years ago, I applied to a hospital in NJ from Oregon and received a call that they would like to hire me. I had no idea of the hospital or its reputation at the time and looking back I was incredibly blessed by how good a place it was.

Now as Valley changes in some drastic ways, it is time for me to move on and make some changes that are good for me. In some ways it is a step backwards in order to take two steps forward. But the opportunity to work in a level 1 trauma Emergency room at St. Joseph's Hospital is to good an opportunity to pass up. This is the dream place for me to work. I have always had a pull toward drama and crisis situations. It is the place where I can kick into gear and do my best work.

Monday morning I will begin orientation for my new job and soon I will move to nights where I will see the high drama of a level 1 trauma ER in the poor part of Paterson unfold.

To be continued....

The long road to recovery....

2011-08-20T12:19:00.002-04:00

30 weeks and 2 days ago I had brain surgery. It was a surgery that was uncertain of how well it would fix the numerous issues that I was suffering from. It was a surgery that could lead to more complications in some cases. It was also a surgery that could have to be redone down the road. However, after having suffered for years with increasingly debilitating symptoms and especially over the last few months I decided it was well worth the risk.

Following surgery, I felt an instant relief. Never mind the serious pain from having the back of my head opened or the 2 brain infections I experienced. Somehow knowing those were only temporary made it worthwhile. Over the next few months I gained use of my right side again, had no headaches, and slowly returned to normal life.

As I prepare to go in for my 6 month follow-up MRI (I know it's a bit late), I have been having some headaches. This week the headaches have been pretty intense but it feels like it is more muscle related/tension. In order to access the brain they had to remove the muscles and reattach them. And due to the grafts they had placed, I am not allowed to have any direct massage on the area yet. So now it is back to heat packs (not appealing in this muggy weather), and muscle relaxers.

I believe that God brings us through all things for a purpose. There was a purpose in me becoming sick (sometimes I think it was to slow me down a bit). There was a purpose in me going through surgery and now there is a purpose in this. Even when things aren't a 100% right now all I have to do is think back and remind myself of how bad things were before surgery and I am so grateful for where I am now! In the mean time I will continue with my physical therapy and treatment and trust God through each circumstance.

Changes happening!

2011-08-06T11:13:00.002-04:00

When I decided to change from Social work to Nursing, I always envisioned myself doing trauma/emergency nursing and disaster work. This has always been a passion of mine. Moving to NJ to finish my nursing degree, I never envisioned it would take SO long but with getting knocked out of school, then having to put school on hold for brain surgery, and now just taking a while to finish this last 2 exams. However, I did know that NJ would be a great place for me to work in the area I want to work.

As things have been changing at my current job and being uncertain of how long it will take to finish these last 2 exams, I decided I would try to make a change. Being so close to finishing most hospitals won't consider you for hiring because they know you will be moving on soon. In light of that I really did not think I would have much opportunity. However, a nearby hospital will be opening a brand new 6 floor critical care center including a large level 1 trauma ER. When a friend of mine got a job there, he took my resume to them and within a very short time I was called. This week I had 2 interviews and yesterday I was offered a position as an ER tech beginning in 2 weeks.

To take the offer required a pay cut and going to night shift, but I am so excited for the opportunity to get my foot in the door of a level 1 trauma ER. I will be working directly in the ER including their Trauma rooms and will be able to get a ton of experience. I am hoping that when I finish my nursing degree that I will be able to slide into a position with them as well.

St. Joes ER is in Paterson, NJ which is a very poor area and lots of gun shots, stabbings, and other issues. So I am moving from a wealthy clientele to a much poorer clientele but that is much more what I am used to and comfortable with.

As an update on my retake of my exam, they said I am ready to finally be scheduled. The lady who does that is back in the office Monday. Hopefully Monday I will have a new test date.

Time to revamp

2011-06-19T20:02:00.002-04:00

Well, unfortunately I don't have better news. The exams boasts a measly 65% pass rate and now I know why. I did not pass my exam. The frustrating thing is, apart from Friday, I don't know that I could have been better prepared and calm. I can resubmit my forms in a week but unfortunately I think I am going to have to wait awhile to be able to pay for it. So now I just wait and see.

Rough beginning, but a fresh start

2011-06-18T05:54:00.003-04:00

Yesterday, I started off a bit rough in my lab simulations. Then I allowed myself to get a bit discombobulated and now I have to repeat the lab simulation portion of the test today. Lab simulations was the area I was most concerned about because it was areas that we did not do in nursing school necessarily, I it is hard to practice.

But last night I came home and went over and over them and now again this morning it is feeling like second nature again. I still have till 2pm but once I get to the hospital for my 730 pt, I will be busy right up till then.

This week I have had this verse in my head and could not get it out. "I can do all things, through Christ who gives me strength." Phil 4:13. And coming into this test I knew I needed to rely fully on Christ in order to get through this! It has been a long couple years and this is one of the hardest test I have had to take. But yesterday, as I got in my car a bit frustrated with my self a song came on and it hit home.

Matthew Wests- Strong Enough

You must
You must think I'm strong
To give me what I'm going through

Well, forgive me
Forgive me if I'm wrong
But this looks like more than I can do
On my own

I know I'm not strong enough to be
everything that I'm supposed to be
I give up
I'm not strong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
For the both of us

Well, maybe
Maybe that's the point
To reach the point of giving up

Cause when I'm finally
Finally at rock bottom
Well, that's when I start looking up
And reaching out

The past 2 years, I have reached that point of giving up. This is not the giving up that means I am depressed or discouraged. It is the giving up that says, I recognize that on my own strength and my own accord I can not do enough! But that is where God's grace and mercy has always shown Himself. So today as I return to my do or die scenarios at 2pm, I am looking up, I am reaching out and I am relying on God to give me the strength to accomplish it, the peace of mind to be able to focus, the steady hands to not make stupid errors, and the ability to do the math which has been my nursing school nemesis.

And the amazing thing is, I am was most worried about the wound care station and that is the one that I did so well on. Go figure. :-)

Another amazing thing is, is that my patient this morning, I already have info on what I need to do, and it is very easy. So I am already seeing God's hand as that allowed me to spend last night and this morning reviewing for my labs. God is good, all the time!

Thanks for your support and encouragement!

Today is the day!!!!

2011-06-17T09:19:00.002-04:00

It is 9:19am and I just finished going for a run, ironing my nursing uniforms, and now just doing last minute packing. I will be driving 2 1/2 hours up to Albany, NY where I will stay for the weekend. My exam will be taking place at a hospital in downtown Albany.

The first part of the exam starts tonight at 4pm. First we will be oriented to the exam and the weekend. Then we will do the first part of the test. This part consists of mock scenarios. We have to do 2 of the 4 following: IV push, IV piggy back, IM/Sub q injection, or Wound management. We are allowed one repeat if we make a mistake.

Then Saturday morning we arrive at the hospital at 7:30am. We will then be given 2, 2 1/2 hour blocks of time where we will take care of a patient. In this test we are to research the patient, do 3-5 areas of care that they choose for us like Respiratory Assessment, Musculoskeletal management, IV, Medications, etc. Then we must finish all of our documentation on what we did and write a care plan for what we did. If we make a mistake or if we don't finish in the 2 1/2 hours allotted we fail. We will have 2 patients Saturday and 1 on Sunday. 1 is a pediatric patient, and the others are adult patients. We can have one repeat in the pediatric and one in the adult section.

After the 2 scenarios Saturday we are finished unless we have to repeat one of the labs. Then Sunday we arrive for our last 2 1/2 hour scenario at 7:30am. If there are no pt repeats then we would be done after that patient. If there are any repeats it could last till as late as 6pm.

My specific prayers beyond passing are;

No repeats

Calmness (which I have so far)

Documentation would go smoothly

Care plan (this is a very subjective area and as I have sent in multiple care plans for review each person is looking for something different) please pray that this will not be an issue.

That things would go smoothly as if I do it every day and that my memory would be quick and clear.

I believe God has me at this point for a reason, and I believe firmly that I am going to get through this weekend with His help. I don't know if it is the process of going through brain surgery and all that I went through the past year or two, but I have such a different perspective on life. I have no doubt God is a God of His word and when He says in the Bible, "I will never leave you nor forsake you!" He means it. When He says, "I love you with an everlasting love!" He means it! When He says, "You can do all things through Christ who gives you strength!" He means it! Sometimes things don't go the way we want them to go but I am learning that often it is not the route that was best for me but I just couldn't see that then.

As all goes well, and as God guides me, I will be an uncertified nurse at the end of this weekend! Thanks to everyone who has supported me and encouraged me over the past few years as I struggled through this process!

Back to work

2011-06-09T18:44:00.002-04:00

Tuesday, I was able to return to work 4 1/2 months after surgery! It is a slower time for the hospital so it makes it a good time to transition back in. But I am able to do all of my work with no pain! Praise God for that! It is nice to be back into the full swing of things. in 8 days I will start my last nursing exam. Yeah for changes on the horizon!

Moving

2011-06-02T21:03:00.002-04:00

Again another God thing!!! Over the past few months the Lord has laid some things on my heart but my current living situation would not work. So a while ago I told my roommate that I was looking to move but not in any particular time frame. I knew that she needed time to find another roommate. Well, she found a roommate and was looking to move July 1st.

With my exam coming up and beginning work next week I didn't feel like I had a lot of time to search. But God took care of that for me! I found a place on Tuesday. And I returned yesterday to check it a second time and turned in my paperwork to accept the apartment. Not only is it amazing how quickly it came but the details too.

I wanted a 1 bedroom with office or a 2 bedroom, no carpets, allow pets, top floor, and a few other details. My price range made this a tough feat. Well, the apartment I found is on the 3rd floor of a 3 family house that is owned by a old Italian couple straight from Italy. The apartment is huge and has a very big bedroom and a second room the size of my current bedroom. It has a good size kitchen, living room and small sitting room. All this and it fit my requests to a T!

I decided to wait and look at another place the next day. The amazing thing is that I went to see the other place and the guy never showed up or answered my calls. But just seeing the outside of the place and I knew the apt I found was a great deal. All this and I don't have to worry about looking while I return to work and continue studying for my exam.

Nursing exam

2011-06-02T20:33:00.002-04:00

2 weeks and 1 day will begin the beginning of my 2 1/2 day exam. This is my last clinical exam and after passing it I will be able to sit for my NCLEX exam to receive my license. I can't believe how quickly it is coming. Part of me wants this to come quickly so I can get it over with but the other part of me wants it to never come.

The exam consists of showing up at 4pm on Friday night. The first night will be an orientation and the lab simulation. During the lab simulation we will be given 2 of the 4 following tasks to accomplish in a set time frame. These will be done in a mock situation. The tasks include wound management, IV Push (giving meds through the IV), IV injection, and IV piggy back (hanging a med as a secondary IV bag). I feel pretty good about these even though I don't have much hands on with them over the past year. I have practiced them at home with a make shift set-up. I am just praying that I won't get the wound one as that one has a lot of areas where you can make simple mistakes and fail. If I fail any of these I will be given one repeat.

Saturday we go to the hospital and will be given 2 patients to care for. We will have 2 1/2 hours to accomplish the given task on each patient. We have 3-5 tasks that we are asked to complete and then we must write out a care plan and document everything in that 2 1/2 hours. Saturday we have 2 patients and Sunday we have 1. 2 of the patients are adults and 1 is supposed to be a child. If at any point we fail we will be given one extra chance on the adults and one extra chance on the pediatric.

If all goes well I could be out of there by noon on Sunday. If I make a mistake I would be there till 5 or 6. I am truly praying for this to go smoothly and that there are no repeats. I know that once you have to repeat a step it becomes more difficult because they are more critical and you are more nervous.

I have been preparing and praying for this and feel an incredible peace about it. I can't explain this peace except that it is straight from God. In all reality I have not had hands on experience in over a year and the passing rate is only 65%. But I feel as though God is preparing the way and helping me have a confidence that I can't explain. I am definitely looking forward to this being in the past. And I would definitely appreciate all the prayers I can get for that weekend. I know it is those prayers that will give me the strength to get through the weekend.

Moving forward....RN accomplished?

2011-05-31T23:26:00.002-04:00

Not yet, but I am moving forward! June 17-19th I will be taking my last nursing exam to finish my schooling before taking the NCLEX for my certification. I was told it would take 5-7 months from putting in my application to getting a date and yet 1 month after submitting my paperwork I was given a date. God is so good.

The exam has a whopping 65% pass rate but as difficult as it is to study for I feel peaceful about it. God has brought me this far, and He will help me finish.

I will be working with an examiner in a hospital to evaluate my clinical skills. I have not had any clinical practice in over a year but I am working with a mock patient I have set up and just trying to review the requirements they have for each skill.

Here's to another milestone coming my way!

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Running

2011-05-31T23:20:00.002-04:00

When I struggled through my last marathon November 22, 2009, I was not sure what the problem was. First I thought it was over training and would cut way back but even with rest my body wasn't recovering. However, I was finally cleared to attempt running again.

It began with mostly walking and slowly I have found myself back to running. It is a simple 3o-40 min of walking and running but it is much better than not being able to do anything. On Monday, I had the opportunity to run 3o min with my sister n law and was able to run the whole thing. It helped to have someone to run with and keep me from stopping when I really wanted to.

I now have my eye on accomplishing my comeback 1/2 marathon and marathon. I might have to walk some but I have come so far and I am looking forward to trying to challenge myself again. We will see it is one step at a time!

"I can do ALL things through Christ who strengthens me!" Phil 4:13

Long awaited update or maybe not :-)

2011-05-31T22:04:00.003-04:00

It has been 18 weeks and 5 days since my surgery and I have come a long way. I have completed my official physical therapy! I reached the point where my strength and balance had come to the point where she felt that I could continue it on my own. I have even been cleared to try running which I had not been able to do since November 22, 2009.

Before the surgery, my surgeon said the surgery would help the headaches, and possibly some of the symptoms above my waist but he was not sure that anything more would be helped. My symptoms included debilitating headaches that even dilauded didn't even touch, right sided weakness and rigidity that began to cause me to fall and drop things. I began to lose the ability to use my right hand which is critical as a nurse for things like drawing blood and putting in IVs. I had chronic pain and horrible fatigue. I forced myself to get through work daily but it was becoming more difficult. In my last hospitalization they were testing me for a stroke and for seizures because of some of the symptoms that were appearing. And the symptoms didn't end there.

Well, in the 4 1/2 months since the surgery, the headaches are gone. My strength and use of my right side has returned with very little difference between the right and left side. And even the chronic pain is all but gone. Far beyond that I have regained my hearing and some of the loss of my eyesight which was not even known to be caused by this condition.

4 weeks ago the doctor cleared me to begin lifting more than 10lbs. Because of the fact that they removed the muscle to have access for surgery and then reattached them the one lagging pain from the surgery has been the pain in my neck and shoulder muscles. They would seize up and cause a lot of tension pain. But this week, I have hit a point where I can push myself and not struggle with that constant pain. I have felt energetic and able to go about my every day life without having to make modifications.

This is perfect timing since I return to work next Tuesday for the first time in months. I will return to work the first week for 3 days to ease myself in. I am really looking forward to returning to real life and putting all this behind.

God has been so faithful through all of this! Know therefore that the Lord your God is God; HE is the faithful God, keeping His covenant of love to a thousand generations of those who love Him and keep His commands. Deut 7:9. I look back on the last couple years and can see how God has orchestrated every little detail to bring me to this place. From moving me to NJ 40 min near the Chiari Institute and having the great church I have, that has been so supportive. To how God has brought me through a condition of such unknown and little guarantee and now I'm feeling so much better than anyone could have ever expected. I have loved God but this has brought me closer in a very real way. Jesus has become my strength in the littlest thing to the biggest thing. You find yourself in utter dependence on Him when you are in a situation like mine but you also find yourself so incredibly peaceful despite the crazy circumstances swirling around you.

I pray that you can find that same calm and peace in the storms of this life. I would not trade any of this situation for a moment. I have gained so much because of it!

"Your love oh Lord, reaches to the Heavens, Your faithfulness to the skies!" Psalm 36:5

Surgeon Follow-up

2011-04-28T23:35:00.002-04:00

Monday I had my 3 month follow-up appointment with the surgeon who performed my brain surgery in January. First I must say that sitting in the waiting room gave me MUCH to be thankful for. I saw people much worse off than I, making me realize that thought things were difficult for me, there is someone who is worse off than me. Sounds a little rude to say but sometimes I need a little perspective and Monday was one of those days.

As I sat with Dr. Bolognese I was excited to share with him how much I had improved. He was a champion for me but at the same time even he said my case was "no slam dunk." Meaning he was not 100% sure that all my symptoms were caused by Chiari or would be cured by the surgery. However, the progression of symptoms over the past year, opened the door for one of the best surgeons in the country and possibly world, when it comes to this condition, to perform surgery.

Since my surgery I have had no headaches, and many of my other symptoms are gone. However, I still have pain in my legs that has not gone away. It is a deep, pressure pain and they are not sure what it is. He said that if in 3 months it is not gone they will evaluate this. By this time most of what should improve from the surgery should have occurred.

In our discussion he explained when he opened me up what was there was worse than what was showing on the MRI's and CT scans. However, by the grace of God he was able to cut less bone away in the procedure. This is key in my case because the more bone that is cut away can lead to instability in my neck and possibly having to have a neck fusion.

Dr. Bolognese cleared me to increase my lifting (for the past 3 months I have not been allowed to lift over 1olbs, do you realize how many things in your every day life weigh this much. I still have to be careful lifting but for the most part I am free. He has given me clearance to return to work on June 6th and only this long because of the fact that my job requires heavy lifting. I will spend the next month in physical therapy strengthening myself for this task. Oh and no roller coaster riding for me. :-) It is important I avoid anything that can cause a whiplash which could reek havoc on my situation.

I will follow up in 3 months with an MRI. And based on what he sees there, and on my pain he will determine if there is any further treatment necessary.

I must say that with 3 months of no headaches I have been so grateful. Unfortunately in the last 2 weeks I have had headaches nearly every day. It is hard not to be frustrated by this but I have peace that God is not done. I have restarted the muscle relaxers and the hope is that it is related to the increase in my physical therapy, specifically of my shoulders and neck area. We are hoping that it is muscle tension, as they did have to remove those muscles and reattach them so they have been through a lot. Please continue to pray for this as well as for the leg pain.

Blessings

Update long overdue

2011-04-19T22:33:00.002-04:00

It has been way too long! I am 3 months post surgery and will be meeting with my surgeon next week. I am feeling much better. It has been a long 3 months. I have had up and down days and still do but they are getting further and further apart.

I can finally sleep without pain most of the time. I am doing physical therapy 3 days a week and on my own 3 days. My physical therapist is fantastic and she is good at pushing my limits. She told me the other day she was really proud of me...which was weird to hear. We are hoping that next Monday when I meet with my surgeon that I will have my 10lb lifting limit lifted. Then she is really going to kick my butt. Each evaluation I have shows that the balance, and right sided weakness is improving quite significantly. This is one thing many doctors refused to attribute to my chiari.

I have not had a headache since the surgery apart from the ones from my brain infection. Every time I have a little twinge of one, I must admit I get nervous. I know that repeat surgeries are not uncommon but my doctor has a significantly lower rate than other surgeons. I am praying that this is it.

I am still not working. If I worked a desk job I could probably return but since I have to lift patients I am not allowed to return yet. I am hoping that if my lifting limit is cleared next week that I can spend May rebuilding my strength so that I can return to work at the beginning of June without risk of injury.

I am keeping myself busy with studying for my last nursing exam, for a medical coding certificate that I am completing as well as doing my physical therapy.

Thanks for all the support! I have received so many cards and gifts and for that I am so thankful.

It's been a while

2011-03-01T22:59:00.003-05:00

Sometimes it's hard to think of fresh things to share on here when my life does not consist of much but sleep, rehab, sleep, and more rehab. Doesn't seem interesting to share though I know so many follow this to keep up on how I am doing. This Thursday will be 6 weeks since my surgery. CRAZY how time has flown by and yet it feels like such a lifetime ago.

I have spent much of that 6 weeks cooped up inside and becoming stir crazy. It has been both frigid and icy or snowy out much of that time and none of that is a good scenario for me getting out. The obvious is the snow or ice being a slipping hazard. The less obvious is that the cold temperatures cause the muscles in my neck to spasm and being that they had to remove them to do the surgery and re-attach them, this is painful. So instead I have kept myself busy with reading, studying my bible, sleeping, knitting, sleeping, watching TV, and more sleeping. :-). I have been able to mostly get off the pain meds except for days of physical therapy. This has helped with me being able to not feel so sleepy and my body seems to be adjusting to the high levels of muscle relaxers, making it less diff to stay awake with them.

I am currently going to physical therapy 3 days a week and on the off days I have built up to being able to walk for an hour. Nothing fast and its flat here so not too difficult but definitely some improvement. I am hoping that in the next week or so I can get back to my gym and start using the machines there. However it is limited since I have to lift less than 10lbs for a few more months. That is a difficult task because so much in life ways 10lbs or more and normally you never think about it. But as stubborn as I am, I want to be good with this because I want to never have to have this surgery redone (always a possibility).

Every day I am blessed by the ways God is providing and bringing healing. I am so blessed by ALL the cards, and notes. I wont ever be able to respond to them all but please no how truly grateful I am. I pray God will bless each of you with an abounding love, joy and peace that only comes from the maker of the universe.

Baby Steps

2011-02-16T14:22:00.002-05:00

All new things start with baby steps. My first step was to have my surgery. 8 hrs in the operating room and then 6 days in the hospital. On the first day I was up walking a full lap around the nurses station, then I spent most of the day up in the chair. The nurses were saying how well I was doing, beyond what they had seen. I was determined to spend every possible moment awake up in the chair which is the only way I could get better. By my last day there I had walked 3 laps around the nurses station in the morning and again another time in the evening. Within a week and a half of being out of the hospital I was able to walk around the house without the walker.

All these small baby steps forward and then I got a viral brain infection that completely knocked me for a loop for nearly 2 weeks. The fevers are finally gone I hope, but the nausea has hung on. Yesterday I could finally get some toast down and some fluids. Today I was able to eat some cereal and toast.

Nearly a month later that 2 week set back took its toll. But today was a nice sunny day and a little warmer. With a few days above freezing the roads and sidewalks are pretty clear so I was able to take a short walk with out risk of falling. I made it about 6 blocks round trip. Not much but considering how little I have been able to do that is HUGE for me. I would rather not tell you however that that short little jaunt took me nearly 35 min and my heart rate got going even at that ridiculously slow pace that isn't even fast enough for a good Oregon girl. I feel like I just did a 5 mile run.

To think I was running marathons, and now I am barely walking 6 blocks without being fully exhausted for the rest of the day. But I am so grateful after the past 2 week set back that I could do as much as I did. All this is only by God's grace and mercy. He is my strength and my salvation. In Him I can do all things. The top of the mountain looks so far away but He doesn't call me to run there. He only asks that I take steps forward. In my case it is baby steps for now. And I am learning to accept that.

Sorry It's been a while!!!

2011-02-13T15:06:00.002-05:00

Sorry that it has been a while since my last post. I broke my 6 days of fever finally and went for a CT scan as well as blood work. I just have not been feeling well, and sleeping a lot. I have been very nauseous and super sensitive to smells of any kind. My stomach is one of the things not recovered yet, and the vomiting and fevers for those 6 days have whipped me out. Hopefully the doctor will have my CD of the CT scan so he can look at what the reporting doctor had said regarding the fluid on the brain and inflammation. The ideal situation would have been to go pick it up myself and mail it next day air but unfortunately that wasn't an option so instead I am at the will of the hospital.

My mom is still here and happy to be flying home tomorrow. It has been a long few weeks but I really could not have made it without her. God is good!

Thanks for everyone who are sending messages and notes of encouragement. It is a true blessing.

Update

2011-02-09T19:22:00.002-05:00

So yesterday, the doctor decided after 6 days of moderate temperatures to finally send me for a CT scan of my brain as well as blood work. Today they called me and told me the blood work was OK. So it is likely a viral infection that I was dealing with. The CT scan however shows inflammation in the brain and fluid around the brain. This could be a problem or it could be normal considering I have just had brain surgery. The surgeon is waiting to receive a copy of the CD so that he can evaluate it himself and determine if these things are just normal post surgical things or whether this is a complication that needs to be taken care of. t

Today, I had a day free of fevers for the first time since last Thursday. I am still dealing with the headaches and just not feeling good. But considering all I have been through in the past week, it is probably going to be a while before I am feeling much better. But that time will come soon enough.

Please pray for a timely arrival of the CD to the Surgeon and for things to be clear as to what is going on. Pray for wisdom on there end as to what needs to be done if anything.

Physical therapy

2011-02-08T19:11:00.001-05:00

Today, I went to my first physical therapy appointment. Today was just an evaluation so they could make a plan for my recovery. They are focusing on my necks strength and mobility. Also they are going to ask the doctor for permission to extend my physical therapy to work on strength in the rest of my body especially legs, and arms. as well they will work on my balance.

Starting next week I will begin physical therapy 3 to 4 days a week for the next 3 months. I am looking forward to starting this next phase in my recovery. For the next few weeks I am still not allowed to drive so that is the largest challenge I have. But I have recently found out that my hospital has a car that will transport a person back and forth for appointments and for employees they wave the fee. They serve a 30min radius. My house is hopefully just barely in that radius. They said they would see and as long as it is close they would provide transportation as they can. It's a very small group and is first come first serve but hopefully that will work for a for a few weeks till I can drive.

Serious situation

2011-02-05T23:21:00.002-05:00

So Thursday was my first follow up with my neurologist since my surgery. This is the original doctor who diagnosed me and she has been my staunchest supporter through all of this. One of the first things she said was, "Wow you look very pale and have very bad circles under your eyes." At that point I didn't realize how sick I was and I was just excited to show her I had done so well since my surgery. After leaving her office I proceeded to vomit during the ride home. Once I was home the vomiting continued. By about 5 am that had settled but the headache and neck pain was still very severe. Friday morning out of the blues I decided to check my temperature and to my dismay it was 99.9. This is only a moderate temperature but in light of just recently having brain surgery is a very important thing to pay attention to.

So I called my surgeons office and the nurse was concerned as well. She called the doctor as soon as he was finished with surgery and following that she called me back and explained that they want to monitor it over the weekend to see what happens. Really the main thing they can look at is my temperature and they are hoping it does not hit 100.3. Normally they look at temperature, a headache, stiff neck and sometimes a rash.

Well headaches are difficult in this case because post surgery that can be normal or a sign of other things. Stiff neck is also difficult because I just had major surgery which is going to require a couple months of physical therapy for my neck. However, I have been working on this and have had decent mobility and now with this it has gone to virtually no movement.

The main thing is if I have a fever of 100.3 or if vomiting continues then I am to call them and speak with the on-call doctor or go to an ER. Some are asking why wait? Well, currently the experts in this are concerned but also think that there is not much they can do to diagnose it at this time. One of the main diagnoses tools is a spinal tap and we all know how well that went last time. Beyond that I am not sure whether it is even possible to do a spinal tap this soon after brain surgery.

Friday night my temperature broke and there was a little improvement in my symptoms. However early Saturday morning those symptoms worsened as did my temperature. I am concerned that things are obscure and I am definitely not feeling well. My plan is to call the doctor Monday as long as things stay as they are and be firm with them that I would like a further evaluation. Being that the difference between whether it is a viral or bacterial infection becomes a critical situation and the symptoms are not really clear I don't want to wait too long.

Please pray that the symptoms become very clear and the doctors can differentiate them to make a clear diagnosis. Either one is serious but one is much more serious than the other. Pray for wisdom as to what tests to do and when.

Thanks to everyone who has been so concerned about this as well so supportive! It has been an overwhelming blessing.

No more staples!

2011-02-03T19:14:00.002-05:00

Today was my first follow-up with my doctor since I had surgery. My friend picked me up and drove me there. I have been experiencing a very bad low-pressure headache which is not unexpected following this major surgery. It is related to my body's slow adaption to the changes of pressure in my brain. This one however, has been very intense, including vomiting. My poor friend had to put up with it on the way home. Thank God she had a plastic bag :-)

The doctor was impressed with my recovery but was concerned that I did not look well today. I was very pale and had circles under my eyes. They took my staples out which was a big relief. She did say though that there was great improvement in my muscle weakness which is a huge step.

Now I am home and I am not moving. For some reason movement is what my body can't handle. It didn't matter if it was me moving or the car moving. So for now, it is a mellow evening with hopes that this will pass soon!

2011-02-03T13:06:00.003-05:00

Last night I had a hard time falling asleep. The pain medicine keeps me wired and so most nights I don't sleep or don't sleep well. I have been trying different things to try and make things more conducive to sleep. Last night I think I managed to fall asleep around 3am. I did not stay asleep well this time however, because I was having serious neck pain and base of the skull pain. It is really hard to describe but I feel like I need to pop my neck like a chiropractor. Now don't go sending me emails about how I shouldn't :-), I know that I should not and will not, believe me! However, that is the best way I can describe it. It is probably the most pain apart from headaches that I have had since the surgery. I finally gave up around 8 am and just got up.

Since then I have now added one of my bad headaches that are super painful. I can't find a position to get comfortable in but the least comfortable is laying down. I am praying I will find some relief from this soon and that in the meantime I handle it with grace and strength. God is my ever present help in times of need and this situation is no different.

One thing I am extremely grateful for is the help of my mother, who flew here for three weeks to help me. For those of you who know our relationship, you know this could be a recipe for disaster. This has been one of my biggest prayer requests and God has answered it in a huge way. We are 2 weeks into her stay today and it has been a huge blessing. I have really enjoyed the time we have had and the support she has been. She has helped me take baths and showers, she has cleaned, she has washed my hair, and braided my hair. She has done laundry and she picks up things off the floor because I can't. She is painting somethings that needed to have touched up. She is like superwoman. I really can't imagine how I would have gotten through these 2 weeks without her. I can't lift, I can't bend over, I couldn't walk for a while without help, I really couldn't cook or do much of anything. I don't know how I would have accomplished these tasks without her. And God has so perfectly guided each day that it has been pleasant and encouraging, no mother daughter fights that could easily be a problem between us. Praise God for this miracle and blessing!

How a day in our house looks:

2011-02-02T14:25:00.001-05:00

Once we have showered and ate my mom and I have been spending a lot of time knitting. This is often how it looks around our house right now. Sometimes it includes watching a movie but most of the time it is knitting.

Faith laying around and always looking for a good belly rub!

If Faith is not getting a belly rub she loves to lay on the end of the lazy boy chair when I am in it.

surgery update

2011-02-01T13:10:00.002-05:00

Overall my recovery has been much better than I expected! I have been really blessed by how God is providing and giving me exactly the strength I need it, when I need it. However, today is a more difficult day. I am nauseous and having a bad headache. Overall I just feel very blah and uncomfortable. Days like today make me very grateful for the good days and I look forward to when this day is over and I can begin a new day.

This evening we are preparing for a snow and ice storm which should make for some interesting times the next 48 hours. I love snow but ice I can do without. Last night the town did a big snow clearing event to try and get rid of the lingering snow in the streets in preparation for this next storm.

Operation Snow Removal

2011-01-31T22:05:00.000-05:00

Tonight my mom and I were in the living room chatting when we heard what sounded like an army of trucks outside. When I looked outside this is what I saw:

Some of the photos are a little different because I was playing around with effects on my computer.

A large back how was plowing the street to clear old snow from our 60 inches of snow this year so far. It was then unloading it into a dump truck.

There was a line up of these dump trucks about 2 blocks long.

This is one of about 5 back hows that was clearing the street from all the snow from our previous storms.

Before my surgery I used to take Faith down to a parking lot at the end of the block to play Frisbee. At that time they had been dumping truck loads of snow in the parking lot to try and clear the streets because we have receive SO much snow there is no where to put it. Since then we have had another 2 storms. We had 30 inches of snow in a storm right after Christmas. In January alone we received another 30 or more inches of snow. So all that noise was the town of Bloomfield working meticulously to clear our roads of all this snow in preparation for another storm expected the next day.

Big step!

2011-01-30T22:23:00.001-05:00

Today was a big day for me. It has been 10 days since the surgery and I have been up and around but only in the house. My friend Meredith came over this morning for a short time and we decided to take a very short walk outside. We took my walker outside and walked on the sidewalk to the corner which is about a quarter to half of a block. The walker helps me with the right side instability and as well it served to help in case there was a patch of ice.

We made it down and back with no problems. It felt so good to both be outside in the crisp, fresh air! When I walk I feel pretty good. My biggest problem is holding my neck up. They removed the muscles of my neck for the surgery and then put them back. So they are very tight and keep spasming. It helps when I support the neck by laying down or sitting in a supportive chair. Each day I am able to be up more but I can tell when I have done too much because there is a pulling and pressure in the neck area.

Berry Muffins

2011-01-30T22:05:00.005-05:00

My roommate and I decided to try a new recipe over the weekend. I love to juice using my champion juicer. The taste of fresh juice made right then is so delicious. My favorite recipe is Apple, spinach, kiwi juice. It is a tasty, sweet apple flavor. the spinach adds a TON of nutrients without adding flavor.

So the juicer I use unfortunately kicks out a decent amount of pulp which I will often add into things to add fiber. Well we have talked about using it for muffins and this weekend we finally tried it making raspberry muffins.

This is our green pulp which we added all of our ingredients to. It looks gross but believe me it is not.

Here is the Recipe if you get adventurous:

4 cups pulp (they tell you of specific types of fruit but since it really doesn't have flavor we just used what we had.

1 cup olive oil

3 eggs

1 cup honey

3 cups whole grain flour

1tbsp baking soda

1 tsp of nutmeg (optional)

1 tsp of vanilla

1 cup of fresh or frozen berries of choice

Mix the pulp with the wet ingredients

Add the dry ingredients

Stir in the berries

Pour into muffin cups or greased muffin tins.

Bake for 45 min at 350 degrees

The finished product:

Now I know that the green might look unappealing but these were FANTASTIC! They tasted so moist and flavorful. Wish you could have tried a bite with us :-)

A month of snow.....

2011-01-29T22:25:00.000-05:00

Since the weekend after Christmas We have had more than 60 inches of snow. Our first snowfall of the year was 30 inches right after Christmas. Last Wednesday we received 17 inches of snow and again this Tuesday we are looking forward to another potentially large storm. I personally love snow and especially here, it is fantastic because they are able to plow it and make the roads drivable.

(This is a picture of my mom throwing the frisbee for my dog in our snow covered drive.)

(Faith carrying the fris over a 5 ft mound of snow that is left from all the snow being piled in our yard and the end of our drive.)

New Jersey has had so much snow in a months time that they have already run out of its budget for snow removal. Towns, businesses, and private home owners don't know where to put all the snow. At the end of our block there is a parking lot with mounds of snow piled 10-15ft high. Our church had to send out an email requesting people to carpool if possible because street parking is so difficult to come by because of all the snow.

1/27/11 Snow and Recovery day

2011-01-28T02:52:00.006-05:00

Another beautiful day of snow timed perfectly after I was home from the hospital and settled in to enjoy its beauty!

Today was a beautiful snow day. My roommate, mom and I were stuck in for a relaxing day. Audrey and my mom shoveled, cleaned and chatted with me much of the day. I still hadn't slept at this point because I'm so overstimulated by the meds. Hopefully the doctor can give me a suggestion for this. In the mean time I am trying to not let it fool me and get me to do too much and hurt myself. I am not to lift over 5lbs and my gait is still unsteady. I need to be cautious I don't open the incision site up, and I need to maintain the pressure that will allow healing.

God has been so faithful in this whole process from getting my mom here, to holding the snow off till after the surgery, to providing the little things for my families needs while I am in surgery. God even provided a companion in my friend Carmen, for my mom while I was in the hospital. They stayed at the hotel together for the first few days and Carmen would shuttle her and keep her company. My mom still talks today about how great it was and how she felt so relaxed. Carmen let her be her, let her cry, let her just relax which was what my mom needed while her daughter was dealing with brain surgery. I am already hearing all the stories my mom told Carmen!

Below are a few pictures of the snow day we had...hope it bring joy to you like it does me. God's creation is so gorgeous especially when it is pure white as snow... a reminder of the purity we receive when we accept Jesus as our savior. We are no longer stained, torn, rejected. Instead we are pure, mended, and accepted.

Audrey working on shoveling out her car!

Faith playing in the snow round 1

Oops guess the sweater needs to be longer to prevent these snowballs from clumping on her underbelly. Talk about painful!

Faith in the snow Round 2

This time we tried one of my shirts which was long enough but it was too loose and she kept getting tangled. Guess we are back to square 1!

After Audrey found out her car wouldn't start she started to clean off my car so that she could use it for work until hers could be fixed. My mom decided to go out and help her!

2nd day home

2011-01-28T02:41:00.003-05:00

Well after a near catastrophe with not being able to get the pain meds they prescribed when I came home tuesday night, my brothers were able to come to the rescue Wed morning with much needed relief. It had been a very long and painful night but God faithfully got me through it with just the strength I needed and opening the doors the next day. Wed proved to be a more challenging day. I was having a difficult time getting comfortable. My muscles in my neck are tensing and becoming rigid despite trying to move them and taking muscle relaxers. I am supposed to be moving it in all directions, except back, in order to prevent it from ceasing up and begin the physical therapy portion of my recovery.

On top of the tension I began to get a low pressure headache that takes the cake over my headaches post Spinal tap in December. This headache would be a 15-20 on a scale of 1-10. It was an intense, throbbing pressure that makes you want to drill a whole in your head and help it. After my spinal tap, laying down was the best thing and within a half an hour it would go away if I stayed there.

This one just intensified and because of the incision, laying flat was difficult anyway. During the evening I was vomiting and very uncomfortable. That night I took my meds frequently and tried numerous positions to try and relieve some pressure...to no avail.

Today when I woke up I just kept drinking Gatorade as the doctor had said, in hopes to replace the fluid I lost but still the pain, nausea, vomiting persisted. However, despite the pain, I was super hyper and unable to sleep since 7am Wed morning. The pain meds were giving me an energy that doesn't make sense and was making it difficult for me to sit still or relax. My roommate and mom kept telling me to sit down, relax, stop doing things. First off, I don't know well how to stop doing things but then you add these meds and I am the most driven, motivated person you will ever meet.

I have emailed the doctor for suggestions but in the mean time pray for some sleep and pain relief.

Home sweet Home!

2011-01-26T13:47:00.002-05:00

I finally got discharged from the hospital last night after one last bolus of IV fluids. They had to keep giving me more IV fluids because in the first 48 hours they had to keep me so dry with diuretics to prevent a coma from brain swelling. So once I was clear of that potential risk they had to help me rehydrate because my body was not producing enough fluid to replace the CSF fluid around my brain. When this happens I get a low pressure headache, dizziness, and nausea. The fluid from the IV's were really helpful but now that I am home I have to be very careful to drink A LOT so I don't end up with low pressure headaches which are only made better by being flat.

The ride home was very long and I didn't realize how difficult it would be. My neck got super stiff and painful. I am suppose to work on keeping it loose but it just so naturally tenses because of the fact that they had cut into the muscles in my neck. Most Chiari patients say this is the part that takes the longest to get better.

On the way home my brother and mom stopped at Target to pick up my prescriptions. By that point I was really in need of pain meds only to find out that Target doesn't carry the pain medication that I needed. We went to the next one and again they couldn't fill it. Once I got home I began calling every pharmacy available and found one that had it. However, because it is a narcotic they needed to be able to reach the doctor and could not. That left me with a night of no pain medicine after just having brain surgery 6 days ago. I had not been able to go more than 2 hours at a time without it.

I made it through a difficult night and until my brothers came to my rescue this morning. Today I am doing ok. Still a lot of pain, and dizziness but I am glad to be on the other side.

I am so grateful to have had the opportunity to have this surgery. As much pain as I am in now, it is crazy how clear my head feels. I can already see an improvement even in the little things like my eyesight and my hearing. I look forward to seeing all the little things that will get better each day over the next few months.

Surgery update

2011-01-23T08:31:00.004-05:00

It is Sunday and I had surgery on Thursday. The first 2 days were much better than was expected. By Friday I was able to walk a lap around the hallway. By Saturday I was able to do it once with a walker and one time around without. It felt very good to be up and moving.

Last night the pain management team came in and decided because of a rash I was getting and because of the percocept every 4 hours not being enough they are going to keep the percocept every 4 hours as I need it and I can use Morphine in between to help with the break through pain. It worked well over night and I was able to sleep for 1-2hrs at a given time which is much improved from before when I would sleep a restless 20min and startle awake.

This morning, however, I am feeling the worst since the surgery so we are taking it very slow. There is some concern of a spinal fluid leak because of the headaches coming when I am upright (I am typing this laying flat) also the nausea and dizziness. It feels very similar to how I felt when I was discharged from the hospital in December following my spinal tap. I am praying I don't get it or that at least I will have the strength to be able to endure that again.

They were able to remove the Foley and stop the diuretic which was removing excess fluid from my brain to prevent swelling. This allows me a little more freedom. They are maybe going to send me to a regular floor today but this room is nice because I have no roommate and they are allowing visitors with no problem.

Yesterday my mom and Carmen spent the day with me and I got a nice surprise visit from Loredana, Trish, Anthony, Brad, and German. Later Michelle came by to visit and it was perfect because she was able to drop my mom off at the hotel. My mom absolutely can't stop saying how thankful she is for Carmen who was a huge support to her...it made it easier for me as well, because I didn't have to worry about her getting lost or anything.

Today's goal is to figure out if my electrolytes (potassium, and sodium) are in line...the have not been since the surgery. Also they are trying to rule out what is causing the rash as well as determine if there is a spinal fluid leak. I am not up out of bed today because of the headaches and dizziness. Hopefully I will be able to get up a little later.

God is sufficient for me and gives me the strength I need for each new moment.

Psalm 34

I will extol the LORD at all times; his praise will always be on my lips. I will glory in the LORD; let the afflicted hear and rejoice. Glorify the LORD with me; let us exalt his name together.

I sought the LORD, and he answered me; he delivered me from all my fears. Those who look to him are radiant; their faces are never covered with shame. This poor man called, and the LORD heard him; he saved him out of all his troubles. The angel of the LORD encamps around those who fear him, and he delivers them.

Taste and see that the LORD is good; blessed is the one who takes refuge in him. Fear the LORD, you his holy people, for those who fear him lack nothing. The lions may grow weak and hungry, but those who seek the LORD lack no good thing. Come, my children, listen to me; I will teach you the fear of the LORD. Whoever of you loves life and desires to see many good days, keep your tongue from evil and your lips from telling lies. Turn from evil and do good; seek peace and pursue it.

The eyes of the LORD are on the righteous, and his ears are attentive to their cry;
but the face of the LORD is against those who do evil, to blot out their name from the earth. The righteous cry out, and the LORD hears them; he delivers them from all their troubles. The LORD is close to the brokenhearted and saves those who are crushed in spirit. The righteous person may have many troubles, but the LORD delivers him from them all; he protects all his bones, not one of them will be broken. The LORD will rescue his servants; no one who takes refuge in him will be condemned.

2011-01-22T23:09:00.000-05:00

This is my bandage and the place where my head was shaved for the surgery! should be fun styling that until the rest grows out. Hats here I come.

First day following btain surgery and he got me upto the chair... Today the anesthetic had worn off so the pain was getting uncomfortable. And sleep has not come due to the pain meds, steroids, and my diuretic to keep my brain from swelling are causing me to not sleep but 20 minutes at a time.

My mom finally got a chance to do my hair. Something she always wished for when she had a girl...only took brain surgery and 32 years for me to let her. She was in heaven.

Walking with a walker. My first time up.

2nd time up. Once around with the IV pole.

My first postop updated

2011-01-22T01:48:00.002-05:00

First off I want to thank Carmen for keeping people up to date with everything as best she could. As well she took my mother under her wing and encouraging her through this first few days. I know it was a lot but it helped me not have to worry about people knowing how I am doing.

So I was leaving for the hospital around 6:30am on Thurs when I received a call about where I was. I guess they had the early case cancel and there was a miscommunication and someone was supposed to let me know I needed to be at the hospital around 5:30am. Once we finally arrived I was rushed back and into surgery quickly. The first hour or so was just preparation. I was actually awake for a while in the OR which was neat to be able to interact with the surgeon and Anesthesiologist. They both had good re pore and we were joking back and forth. It definitely help lighten my day up in light of a major surgery.

When I came out none of my family was around. I was then brought from recovery to my room and don't remember any of that. The first part I remember was the anesthesiologist who came in and ended up helping me as I was throwing up a lot. i kept saying sorry and he kept telling me no problem...it was part of his job.

I kept asking for my family and no one knew where they were. The only number I could remember was Sean's but he was not at the hospital yet. I kept saying that I was going to fire Carmen and my mom! LOL. Once they showed up I felt better. I just was throwing up, combative and disoriented and wanted someone with me.

The first night was the hardest. The pain was well under control because of the remaining anesthesia and the PCA pump which allowed me to take meds throughout on my own. Last night I met with the pain management doctors and we discussed a plan. I did not want to give up the pump if there wasn't a set plan or else it is difficult to stay on top of the pain. However, this morning I woke up with out it and what I thought was a plan. Percocept 2 every 4 hours with a dose of Dilauded about 1 1/2 hours after the Percocept so it would help with the break through pain. The ultimate goal is to get off of the IV meds as soon as possible. It worked ok last night and I was able to sleep for 1 1/2 to 2 hours at a time. However, this morning I am onto a new nurse and she says I can't do that and I just get one dilauded every 4 hours which has not kept the pain at bay. UGGG. Hopefully pain management will come in soon so I can discuss it with them.

They have me still in the ICU to monitor for brain swelling which would put me in a coma in the first few days if they don't keep on top of it. In order to prevent this they put a Foley in me to catch the urine and gave me a diuretic which removed as much as 4-500ml of fluid off me an hour (that's a lot). Hopefully after my last dose this morning I will be off of that and able to go down to a regular floor.

I was able to cancel the pain control pump last night and I am on 2 percocept every 4hrs and a dose of dilauded IV in between to help with the holdover pain. But now they are trying to really change things up and my meds have not been keeping up with the pain today. This afternoon I was not able to maintain the pain as well so we are working with the pain management to try and resolve that issue

Today I got rid of the Foley so I am having to get up every hour or so to go to the bathroom. Then I sit in a comfortable lap chair.

I got a call a while ago and my mom and Carmen are on their way over with slushy in hand. This helps cool my throat but also gives me something with some calories that I can eat. I am still have a difficult time swallowing.

I hope this made sense. It took me hours to write and reread because I was so drugged I was all over the place. I guess this is what you will be getting out of me for a while....babbling.

Thanks for all the messages and support. It means so much to me and is an encouragement as I go through a rough few months of recovery.

Update on SaraJane's surgery

2011-01-21T23:17:00.002-05:00

Hi my name is Carmen and SaraJane had asked me to update her blog readers on her surgery. Once she is well enough, she will be able to share with you her thoughts and insights concerning her surgery and recovery. This post is just the details of the last two days concerning her surgery. She will log back on to elaborate more on her experience as soon as she can.

Well, the day (yesterday, 1/20) started out in a whirlwind at 5 a.m. SaraJane woke up got dressed and woke me up around 5:30. I had stayed over the night before to help her and her family out with all the details concerning the surgery. While in the car while we were starting to head out, SaraJane got a call from the hospital operating staff, asking her where she was. They were expecting her at 6:30 a.m. instead of the 8:30 a.m. that she had been informed. A little frustrated, SaraJane told them that she was told to be there by 8:30 a.m. She then told them that she was still in New Jersey and is on her way. They told her to get there when she can.

So off we went, SaraJane, myself and her dog, Faith. First, we stopped to pick up her mom and then we had to go and drop off Faith at the doggy daycare. Finally, off towards George Washington bridge into New York. The traffic wasan't bad as I thought it would be. At this point I was driving and not too familiar with the area. I ended up missing an exit and ended up in upper Manhattan. Luckily, we had a GPS and managed to get back on track after a 10 min. detour. Traffic was not too bad after that, and we made it into the hospital right at 8:30 a.m on the dot - the time SaraJane had been told to be there initially. During this time, we knew to just go forward, despite this setback, because God would work out the details.

Right when we walked into the surgical waiting room, the front desk admin and a medical staff, were just talking about SaraJane. They were very glad to see her, "here she is", we all laughed and they took her in right away. Once she was prepped for surgery, it was 9 a.m. and we met with the anesthesiogist. Once he explained how he was going to put her under and bring her back, we said our good byes. Her mom got a little emotional, and SaraJane was able to reassure her. We were told that the surgery would last 7 hours, so her mom and I left.

We went to the cafeteria and had breakfast and much, much needed coffee. We stayed and talked for a couple of hours, hearing stories of Sara Jane's childhood along with many other tidbits from her past. We then decided to go to the hotel and check in. We arrived, unpacked and rested. I was answering texts, updates and phone calls from many of SaraJane's friends. I got a voice mail message and it was the surgical waiting room admin, leaving me a message for me to call the surgeon. The call came in at around 3 p.m. The first thought that came to my mind was that the surgery went extremely well, the second thought was that they couldn't do anything for her and were not able to "fix" the chiari malformation. Her mom was extremely worried. I remained calm and matter of fact. I called the surgeon's number and got his voicemail, so I left a message. We left the hotel and went back to the hospital. On the way to the hospital, while looking for a parking spot in the crowded garage, I got a call back from the surgeon. He told me that the surgery was very successful and that he ended up finishing ahead of schedule. He then proceeded to explain some of the details, but I did not understand much, which I'm sure SaraJane will fill you in on those details. Just that it was successful was enough for me! Praise God for working out all the details of this journey and for those around SaraJane, seeing this miracle take place, really increased our faith.

When her mom and I walked into the surgical waiting room, we were told that SaraJane is out of surgery, and to wait 10 minutes while they try to find out what room she is in. Well, the 10 minutes turned into 30 min. and then another 20 min. In the meantime, I got a call from her brother who told me that he got a call asking him where we were that SaraJane was in the neosurgical unit and was in the room waiting for us. The front desk staff, could not locate her. Some more time goes by and her brother shows up, tells the front desk staff about the phone call he got and they tell contact the neosurgical unit. Lo and behold, she was there in a room assigned to her.

We finally get there and the first thing she says to us when she sees us is "you're fired, you're fired". LOL!! Evidently she was upset because we were not there when she got out. We explained to her about the mix up and after a few minutes she felt better. I thought it was a good sign and she was back to her old self. The drugs were kicking in, but her personality was showing through, so I didn't see much brain damage there. haha!

We spent a few hours with her, while she got adjusted to the IV's and getting comfortable in the bed. She was feeling some surgical pain, but nothing like the debilitating symptoms she had before the surgery. The trembling in her hands had decreased dramatically!! Praise God!! She had a slight numbness in one leg, but that was attributed to the position she was in during the surgery, and it was slow in getting her feeling back. After that, we said our good byes and left for the hotel.

The next day, (1/21), it snowed and it took us a little longer than expected in getting back to the hospital We learned that SaraJane was texting other family members, giving them tasks to do, starting from 6 a.m. that morning. We all chuckled, knowing that SaraJane was back and giving orders and organizing tasks. Woo-hoo! Another positive sign was her asking for a milkshake. We finally arrived with her milkshake and she was looking better. She had not slept much, but was in better spirits. She was even able to get up and walk around the ward a couple of times, with the assistance of a nurse and a walker. During the walk, she was talking to the nurse, giving her advice on running shoes and what marathons to run in. Yup she's back!! We spent a few more hours together and then left her for the night. She had her toiletries bag, her books, her knitting and her laptop for her stay. She also asked for her Bible. She was ready!

So that's it for now. To be continued, by SaraJane. She wanted me to update you on her progress and now she will be taking over with her insights and thoughts on this adventure.

Signing off, this is Carmen! God Bless!!

A note regarding my Surgery

2011-01-20T01:04:00.002-05:00

A quick note regarding my surgery.

My surgery is scheduled for 10:30am and I believe is about 9 hours. I have to be there at 8:30am for all the preparations.

The surgery will be at North Shore University Hospital (300 community Dr., Manhasset, NY). Some of you have asked about visiting and if I would want that. I would love visitors but I will spend about 2 days of my 5 to 7 day stay in ICU. It does not make sense to drive all the way out there if I am still in ICU because of the stricter visiting hours. So please just verify I am on a regular floor and that I am still at the hospital before making the long trip.

My friend Carmen will be trying to post on here and my Facebook page for the first few days to keep you posted.

Thank you for all the love and support. It means so much to me and my family!

It is Well with my Soul!?! Even with Surgery tomorrow?

2011-01-20T00:34:00.003-05:00

A well known song goes like this:

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul

My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

It is well with my Soul

It is Well, It is well, with my Soul

This Hymn was written in the 1800's and you would think it would have been written by a man with much, a man who had little wants. However, it was written from the heart of a man who had lost his only son at the age of 4 to illness, lost his investments and all his money with a major fire, then lost all his daughters in a boat accident. And yet this man was able to say "It is well with my soul!" This comes from a man who didn't ignore the pain, but who had been touched by the one who suffered SO much more than he ever would. This is penned by a man who had hope. Hope not in this present day but hope in eternity because he had accepted when the Bible says, "Whoever believes in Him (Jesus) is not condemned..." Jn 3:18.

Believing in Jesus and being a Christian does not mean an easy life. If anything it means you might even face more difficult times. For me, as I face this day of major surgery, I have been asked if I blame God. Do I Blame God? No! Do I feel like He is punishing me? No but I believe He allows things to happen that our character may be developed. I can truly say this past few years, especially the past year my character is being challenged and grown.

Tomorrow is one of the toughest days I may face and I am grateful for it though I may not like it. I am grateful because it has challenged me to be a better person, to love others more, to look at life through a different lens. I could write a book to share of ALL the AMAZING ways that God has provided and moved things just right so they would work out. When doors seemed closed, or locked He redirected me. When, I was at some of my lowest points He put people in my life to love me and encourage me. When doctors were not sure what to do, He put an amazing doctor in my life who helped me navigate my way through the process.

God is amazing, and I truly believe tomorrow is going to be a work of His masterful hand. The success rate is not 100%, it is lower, like 80%. But all week God has really laid on my hear that "Tomorrow is going to be a new day!" The old will be washed away and the new will come in.

It is my faith in Jesus and such an AMAZING God that gives me a peace that does not make sense in light of the brain surgery I face in less than 10 hours. It is this love of my heavenly father that has given me the courage to move forward and take a step of faith into an uncertain fate. With God my fate is certain, and tomorrow will begin a new day!!!

“Praise the Lord, O my soul.” Psalm 146:1

God is our refuge and strength, a very present help in trouble. Therefore will not we fear, though the earth be removed, and though the mountains be carried into the midst of the sea; Though the waters thereof roar and be troubled, though the mountains shake with the swelling thereof. Selah. Psalm 46:1-3

Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid. John 14:27

A few more days to go...

2011-01-17T22:49:00.002-05:00

With just a few more days to go till surgery I have SO much on my plate and yet so little. Yesterday I went to church and then in the evening a few girls and I went out for dinner and hat shopping (I don't have the photos so will post them soon...they are a bit crazy). Today was a day of tests. I had to go in for another CT scan cause the one they did when I was hospitalized was not the right one. I also did an MRI so they would have the most detailed scan for the surgery. And lastly they did an ECHO to make sure my heart is good for the 9 hour surgery. Phew!

Tomorrow all I have planned are just getting things around the house ready and having lunch with my sister n law.

Wednesday is another long day. I have to pick up my info from today's tests and drive out to Long Island for my pre-op appointment at the hospital. Then my mom flies in at 4pm. And somehow I must try to sleep that night.

Thursday my surgery is not till 10:30 am as I am the second case. But you have to be there 2 hours early. during this time they will shave the back of my head, I will meet with the surgeon and the Anesthesiologist, and an hour before a company they use to monitor your nerve and muscle status will come in and put a bunch of electrodes on that will allow them to monitor the status of those nerves and muscles. This allows them to know if there is any problem before they close the surgery up.

It will be a late night as I won't even come out of surgery till around 7:30pm and then I will have some time in the recovery room before going off to the Neuro ICU.

I can't believe how fast it is all happening. I have known for a year that this was coming but until I had a date it was not real to me. Now it is very real and I am nervous. I am at Complete peace and know that this is the right thing to do. I also know that God has directed each and every step of the way and will not bring me this far to leave me hanging. But even in knowing that, I am still human and I am still nervous. I will be glad when I am through Thursday and can begin the long and hard recovery process.

A whirlwind of Activity

2011-01-14T21:33:00.003-05:00

So the past few days have been a whirlwind of activity but we are finally settled. As many of you know I am in need of having brain surgery to repair a Chiari Malformation (herniation of a portion of the brain into the spinal canal). My surgery got moved up so I will be having surgery Next Thursday January 20th, 10:30am at North shore University hospital (300 Community Dr, Manhasset NY). The surgery is quite extensive and will be about 9 hours long. Following surgery I will be in Critical care about the first 2 days. I will then stay 3-5 more days on a regular step down unit.

We just found out this week during the approval process, that the hospital is no longer an in-network hospital. This is a significant change and would cost me 40% of the entire hospital bill which was not expected. However, they have decided to approve it for me as an in-network hospital which is a HUGE blessing. This saves me 10's of thousands of dollars.

I am so AMAZED at how God has provided and the way He is using people to provide and meet needs. Between my family, friends, and my church God has provided an amazing group of support for me as I go through a difficult 4 or more month recovery. I look forward to sharing Gods blessings with you along the way!

Please pray for:

Divine guidance of the surgeons hands

For the details as I plan my surgery

For my moms flight coming in on Wednesday

For complete healing with the surgery

For the healing process

Dilemma solved

2011-01-13T21:43:00.000-05:00

So my ultimate dilemma was explained in the earlier post. The gist is that I had to decide between two doctors. After much prayer and research I finally came to a decision that I had peace about.

One of the things that helped was having a detailed email discussion with my surgeon out at the Chiari institute. They have done more than 3000 of these surgeries since 2002 where the average surgeon does 3-5 a year. The surgeon that was available to me at Valley was in this camp. Beyond that he leaves the herniation and simply just opens up the space around it so that there is hopefully no pressure on the brain. This can work but leaves a lot up to mother-nature and chance. The Chiari institute has perfected a way to treat the herniation with less than 0.03% risks (the lowest in the country).

On top of that, I had the privilege of talking with some of the people who have had surgery out at the Chiari institute. These are not people they referred me to. These are people I have come across over the past 3 or so months. This is quite amazing in light of the "rarity" of the condition. Everyone of them swore by the doctor there and some of them even had been to others and had had to come to this surgeon to have their repair repaired.

When I look at those factors I felt the best place for me was at the Chiari Institute. I really would like to only have the surgery once, and have the best chance at a complete repair. This meant going to the place who not only does a significant amount but also the place who does not leave the portion of the brain herniated.

Since making this decision God has only confirmed it over and over. I will share this in more detail later.

The Ultimate Dilemma...

2011-01-03T21:06:00.003-05:00

So this past week I have been presented with the ultimate dilemma. Last Tuesday, I met with a Neurosurgeon who does surgeries at both Valley and Columbia. He was originally not supportive of doing my Chiari surgery because he felt there were other possible causes for my symptoms. This was one of the doctors who consulted on my case while I was in the hospital. When I walked in to his office I was ready for a serious discussion. I was fed up with meeting with doctors who said that my issue was not related to the herniation in my brain and yet could not give me any answers or solutions.

When I walked into his office we discussed the fact that since my spinal tap during my last hospitalization my symptoms had worsened quite considerably. This was a concern when they decided to do the spinal tap but they felt the risk was worth it in order to rule out Multiple Sclerosis completely. M.S. was ruled out but I ended up with a Spinal leak and headache for nearly 2 weeks. Once that went away my Chiari symptoms had worsened keeping me from returning to work.

After this he went over all of my MRI's old and new. He measured my herniation on my recent MRI and said it was more than 5mm. This is an increase from the original one last February which was 3 mm. The other thing that was shown is that there is a blockage of CSF flow. It is not completely blocked but is hindered. These MRI's are done lying down so there is a possibility that this is worse when upright and gravity has its effect. He then explained to me how the surgery that they use to fix Chiari is done. The next thing I know he turns to me and says, "I really want to help you! I can see that we are at the end of our options and I would like to do the surgery for you!"

Wow, I was not expecting this! I had had so many doctors who had dismissed me, I was hitting the end of my rope. I had gone from running marathons, working overtime, spending time with friends and leading a busy life to now I work by the skin of my teeth and forget my love of running...that is impossible. I have gone from a very active person to an inactive person that sometimes I don't recognize. I have taken up knitting and reading. None of these things can replace my active lifestyle or my love for activity. One day I dream of returning to those things I love but in the mean time I must focus on getting better.

Thursday I went to The Chiari Institute for a follow-up visit. They are specialists in this condition. They treat thousands of patients with the same condition that I have. He told me that we were at the point where surgery was the next step. Now starts the ultimate dilemma!

I now have 2 neurosurgeons willing to do the surgery that gives me the opportunity to get better. It is not a 100% guarantee. It may fix all of it, or just some of it. But we know that nothing else has worked and we are at the last option.

Neurosurgeon #1:

Columbia Presbyterian/Valley hospital surgeon

Director of Columbia's North Jersey office

only does a handful of this particular surgery a year

Insurance covers same as the other Neurosurgeon but because of my employment at Valley it would be waved.

Opens up the area and makes more space to release pressure but leaves the herniated cerebellar tonsils as they are

Neurosurgeon #2

Surgeon at The Chiari Institute

Does 100's of these surgeries a year and more than 3000 total

uses a special color Doppler in surgery

Opens up the area and makes more space to release pressure. Has a system for determining the need for deciding whether to leave the tonsils or to move them back where they are supposed to be.

Would have to cover what insurance does not cover.

Negative: has lawsuit in process but is not related to the surgery I am having. Was able to openly discuss this with them. they have been very diligent in their evaluation of me and have not been pushy towards surgery at all.

When I speak to people at the hospital I work at they say that I should make a decision not based on money but based on the one who does more of this particular surgery. Initially this was my mindset. However, now that I am at the decision point that is not so easy to do.

This is one of the most difficult decisions I think I have been faced with. Normally I am a decision maker but in this one I find myself at a loss for words.

This experience is drawing me closer to God rather than further. It is putting me in a place where I am fully dependent on Him...the best place...the place where He can mold me and shape me. Some people ask why? I know why. No I don't know exactly why I must go through this but I do know the broad reason. God uses these things to mold us and shape us...to make us into a better person. His word says that "He works all things together for good for those who love Him." Of course I don't want to go through this but if I can grow closer to my God through this and learn to love others better, become a stronger person then it will all be worth it. If I choose to let this learning opportunity slide then it will have all been in vain.

A few verses that have been of comfort to me lately:

If God is for us, who can be against us? He who did not spare His own Son, but gave Him up for us all--how will He not also, along with Him, graciously give us all things?...Christ Jesus who died--more than that, who was raised to life--is at the right hand of God and is also interceding (praying) for us. Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword?...In all these things we are more than conquerors through Him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus. Romans 8:31-32,34-35,37-39

Psalm 31:

In you, LORD, I have taken refuge; let me never be put to shame; deliver me in your righteousness. Turn your ear to me, come quickly to my rescue; be my rock of refuge, a strong fortress to save me. Since you are my rock and my fortress, for the sake of your name lead and guide me. Keep me free from the trap that is set for me, for you are my refuge. Into your hands I commit my spirit; deliver me, LORD, my faithful God...

Be merciful to me, LORD, for I am in distress; my eyes grow weak with sorrow, my soul and body with grief. My life is consumed by anguish and my years by groaning; my strength fails because of my affliction, and my bones grow weak...But I trust in you, LORD; I say, “You are my God.” My times are in your hands;...Let your face shine on your servant; save me in your unfailing love...

How abundant are the good things that you have stored up for those who fear you, that you bestow in the sight of all, on those who take refuge in you. In the shelter of your presence you hide them from all human intrigues; you keep them safe in your dwelling from accusing tongues.

Praise be to the LORD, for he showed me the wonders of his love when I was in a city under siege. In my alarm I said, “I am cut off from your sight!” Yet you heard my cry for mercy when I called to you for help.

Love the LORD, all his faithful people! The LORD preserves those who are true to Him, but the proud he pays back in full. Be strong and take heart, all you who hope in the LORD.

Chiari Update

2011-01-03T20:15:00.000-05:00

So I have been out of work now for 5 weeks now. This means that I have used up 5 weeks of my 12 week guaranteed job protection. I still have 7 weeks left and another 12 weeks of unsecured job protection. But I cannot afford to use up the time now before surgery so tomorrow I will try to return to work. I am praying for God's strength as I return to work...I know I will need it. Before my hospitalization I had a difficult time working and now that my symptoms have worsened it is going to be even more difficult.

I now have daily headaches that require pain meds to lessen them. Nothing completely makes them go away. I have vision issues at times, right sided weakness, and I tend to drop things a lot. Now I also have these spasms that cause me to have really strong twitches. It often happens in my legs and arms but sometimes it will happen in my abdomen causing my entire body to seize. They have me on very heavy muscle relaxers which only helps a little.

I am handling the difficulties of these symptoms but I will not lie...I am praying that this surgery will happen soon and that I will have complete relief from them. I choose not to let them get me down and by the grace of God I am able to keep my spirits up but if I am not spending time in the Bible and praying it is easy to lose sight of this goal.

Please pray for:

my return to work that I will be able to manage, and for enough hours to pay the bills

For my decision regarding surgeons

For the surgery to happen quickly

For me to be gracious to those around me as I deal with chronic pain and that I would show much love to them as Jesus has shown me.

I really appreciate the people around me who are constantly encouraging me and supporting me. It is things like this that God uses to show me He is right here with me. I pray that people will see the love of Christ in my life so abundantly. My life has been changed by Christ and I know that I could never have gone through this with out Him.

Blizzard of 2010!!!!!

2010-12-30T20:37:00.007-05:00

Last Sunday around 1pm the snow began to fall, lightly but that was just the beginning. By early evening the snow was coming down at 2-3 inches per hour. Over night the winds began gusting up to 50mph causing blizzard conditions. By the next morning NJ was covered in various amounts of snow. Our town received 30inches. In all my life I have only seen this much snow up in the mountains. Snow was up to my waist. And the usually well maintained roads during snow storms were covered in snow. The snow had come down so hard that the well equipped towns could not keep up. Either snow was coming down too hard or the wind blew what they plowed right back on the roads. NJ called a state of emergency and there was no where to put all the snow.

This was quite an experience. I love snow and I love to watch it come down. It is so beautiful and reminds me of God's love and mercy...how it pours out on us making us beautiful!

Snow came down 2-3inches per hour!

Only a few hours in and my car was coated and snow was up to the bumper!

Faith loves the snow!

By the next morning the snow had stopped and our driveway was not recognizable!

The snow piled up in our doorway!

The snow in our driveway was so deep it came to my mid-thigh. Faith my dog was completely covered once she stepped into the snow!

Our driveway. The snow on the street was up above my ankle. At the beginning of the storm they had attempted to plow the streets, however, this storm was so intense they could not keep up with it and focused on the main roads. Our street did not get plowed for quite a while.

Yes, there are cars under that pile of snow! I would hate to be the one to have to dig those cars out!

This is the road to where my car was located. The snow was nearly to my hips and never got plowed till late Monday!

I decided that instead of parking on the street where I would get plowed in, I would park in a parking lot down the road. Usually they plow this lot as well as the road to it. The problem was that more snow came then expected and because of that they did not plow the side streets like they normally do. So now my car ended up being completely snowed in and unreachable.

Faith playing in the snow with her good buddy Damion!

Faith was coated after playing in the snow. She loves the snow but has to thaw afterwards!

What's next????

2010-12-14T00:39:00.002-05:00

People keep asking me what is next and when. I am not sure how best to answer this. I had my appointment with the Neurosurgeon at the end of October. When I left there the final decision was to have the Spinal tap and 100% rule out M.S. Once this was finally settled they would then move forward with Surgery.

Originally my spinal tap was scheduled for Dec 27th. But with my hospitalization I was able to get the spinal tap a few weeks earlier. Since I have come home, we have mailed all the results to the Chiari Insitute and they will go over all of them. Once they have analyzed everything they will let me know regarding Surgery. I am hoping that surgery could be done by January.

I should be scared facing major brain surgery! I am not saying that I am not concerned but the one thing I can say is that I have an incredible peace about all of it. God has been providing in so many ways and making Himself SO abundantly obvious in this whole situation. I have done a lot of research about it and have a pretty clear understanding of what Chiari is, what the surgery entails, and what the risks are that I face. I feel that the pros by far out weigh the cons. I would love to avoid a major surgery but unfortunately over the past year the symptoms have been increasing significantly and making it more and more difficult to lead a normal life. I have spoken to many doctors and really there have been no other real possible options to help control or minimize the symptoms. Even pain meds don't help with the headaches or much of the chronic pain. Right now I feel that Surgery is my best hope of relieving the symptoms that I have and give me the best chance of getting back to a normal life.

I believe that God has been providing financially, some of the best doctors in the world when it comes to Chiari, a wonderful church and group of friends who have been so supportive through this, my brothers and mom who this has made us all closer, and most importantly He has given me peace. I can't explain the peace other than it is the kind of peace that can only come from Jesus. I believe that all things happen for a purpose and for the glory of God. If nothing else were to come out of this but for me to grow closer to Jesus and for my family to grow closer to one another then it would all be worth it. God has done that and so much more. So on days when the pain is so bad I can't function and I think that it will get the best of me, I just have to remember how God is working in even the smallest detail and I find the strength to endure the pain.

Spinal Headache Update

2010-12-14T00:07:00.003-05:00

Following the blood patch Wednesday, which was hoped to stop the spinal leak that was causing me such pain, I continued to have severe headaches with little improvement. Apart from the nausea clearing up, I was still bed bound. Finally Friday night I was able to sit up for a few hours and enjoy the company of some friends and by Saturday more than a week after the spinal tap I was able to be up for 3 hours which was a significant improvement. Sunday I went to church in the morning and was able to be up for about 3 hours before my body said enough.

Today I am free of the spinal headache which is a huge praise. When they had agreed to do the spinal tap they knew that the procedure could cause a worsening of the herniation from the Chiari. The reason being is that the brain and the spinal cord have a compartment of fluid surrounding it. This fluid stays fairly consistent in its pressure. When you place the needle in and draw out fluid you lower the pressure and can cause a vacuum like effect which can cause the herniation to increase. As well, if the place where the needle enters does not close up then you get what is called a spinal leak (CSF fluid is leaking out of the puncture site).

A spinal leak causes a headache that is indescribable. The only relief is heavy pain meds and laying completely flat. Even elevating my head on a second pillow was not feasible. This meant that for more than a week I had a lot of thinking time and a lot of TV time. Forget knitting or reading a book!

By God's grace I am free from that most recent challenge. I had hoped to try to return to work Tuesday but now I am dealing with a Chiari flare up. Now I am dealing with the classic Chiari headaches and a horrible deep aching in my legs that runs deep and I have difficulty finding relief from. On top of that I have started to have these crazy twitches that occur in any of my muscles at any given time. Sometimes I will sit there for a given period of time and it will just spread through the whole body. They picked up on it in the ER (at that time it was just in my legs) and did an EEG of the brain to make sure I was not having seizures. But since my spinal tap it has spread throughout the body and happens much more frequently. sometimes it will hit my abdominal muscles and cause me to completely seize into the fetal position.

I don't know that the Chiari has worsened since the spinal tap but it sure seems like it. The one good thing is that the hospitalization allowed them to run all the tests and clear any other possible neurological issue. But at the same time the spinal tap has possibly made things worse. Hopefully though I can have the surgery and be one of the 80% success rates and be done with all of this soon.

Update

2010-12-09T00:21:00.003-05:00

This morning I went in for a Blood patch, where they try to close up the hole they made when they did the spinal tap. The drive was very difficult because I could not lay flat, and the movement was tough. Once they got me in they performed the patch. This is where they take my own blood and place it into the lower spinal area where they did the lumbar spinal tap. The idea is that my blood will form a clot over the hole and stop the leak.

Most the time people will have instant relief from the severe headaches. After 20min of laying flat they had me sit up and unfortunately I could see it had not worked. I went home hoping that staying flat it might still work. By time I got home I was so nauseous and the headache was so bad I went right for the couch and had no desire of moving. As of tonight I can see that it has helped a tiny bit...meaning I don't get nauseas when I sit up but I still get very bad headaches. Some people have asked me what the headaches are like and the best thing I can come up with is that they are like nothing you have ever experienced. You want to cut off your head in hopes to have relief...I know a bit dramatic but I can't tell you how much I truly wished I could.

I spoke with the Chiari Institute and they asked me to call them tomorrow and they will see what they suggest. Apart from a blood patch, bed rest and lots of fluids I don't know there is anything they can do. My concern is that maybe the Chiari has worsened which can happen with a spinal tap. I am not sure but in the meantime the bed and couch are fast becoming my friend.

Hospital update

2010-12-08T00:37:00.002-05:00

Well Saturday I was released from the hospital after 4 1/2 days. The great thing was they were able to do the spinal tap that I needed to do before they moved forward with surgery. I had the procedure on Thursday and will find out the results this week. The frustrating thing was that they gave up on the idea of doing a patch right away and decided to try to let my body heal from the spinal tap on its own. My body does not have a good track record with this. It is now Wed morning and I have not been able to even raise my head on 2 pillows without the most severe pain I have ever had, dizziness and nausea. They finally decided that at 10:30am I will finally get the patch that should stop the spinal leak and the wonderful headaches that go along with it.

They have had me on heavy pain medications round the clock that have not touched the pain. The only relief I have is to lie completely flat and not move. I dread eating or going to the bathroom even. The couch in the living room has become my humble abode for the past few days. My poor dog is going stir crazy but is being very patient with me. I finally had my first meal without nausea today because of my good friend Loredana. She brought over pasta, chicken and bread and had it all ready for me. This allowed me to stay lying down, thus preventing the nausea and therefore being able to actually enjoy a full meal. I had to do it lying down but that was well worth the sacrifice.

Please pray that my patch stops the leak and finally gives me some relief. I will keep you posted! Thanks to all of you who have been praying for me and sending me well wishes. They mean the world to me and are such a testimony to God's love and support in my life as He uses each of you to speak to me. I am frustrated by the past weeks events but I am not discouraged. My God is big and continues to show Himself faithful through each and every circumstance.

hospital update

2010-12-02T18:48:00.002-05:00

I am on day 3 in the hospital. Was feeling improvement until today. They did the ever necessary spinal tap which according to my last appointment with the doctor was the last thing needed before surgery. So though it was necessary I was not looking forward to having a long needle stuck in my back. Because of my connective tissue disorder I am at high risk for spinal fluid leaking at the needle site causing very painful spinal headaches. I don't have anything as bad as when I had the complication with a spinal tap previously but I feel like it is building into one.

Since I have been here they have done 2 MRI's, CT scan and an X-ray. The first MRI showed an increase in the herniation to the ever important 5mm mark. The Chiari institute and other Chiari specialist believe that a herniation of 5mm to be Chiari and require surgery. Other doctors who know less about it often don't recognize anything until it is 5mm. The current standard has begun to change which is that Chiari is any herniation, with a smaller hind brain than normal and significantly symptomatic. Previously I fell into the more recent standards but now I am recognized by both standards.

The surgeon at Valley who is overseeing my case because my normal surgeon does not come to Valley, says that Surgery is a last resort as does the Chiari institute. He wants to make sure that I have no other possible neurologic problems that could cause it...thus the gammit of tests. I still have two more to do (EMG-study of nerves and muscles to see why I have such weakness and problems with my right side and an ECT- to evaluate the nerves to my eyes and ears because I have had increasing problems with them). So if these show negative then I will have a 3rd doctor recommending surgery. I am hoping that since the spinal tap was a month earlier than originally planned that maybe i can get the surgery done before the end of the year. Due to the changes in health care insurance my rates are already changing significantly which means the cost of the surgery will going up after January 1.

God is in control and knows when the right time is and I am just trying to trust that.

P.S. I apologize if the writing of this blog entry is not clear. I am on significant medication. It took me 4 times to reread this and try to clean it up. Everything is muddled in my brain so I am sure it is not my best writing. LOL

Hospitalized

2010-12-01T22:12:00.003-05:00

Tuesday I had a headache and pain that was not responding to pain meds I usually take. So Sean took me into the ER. Thankfully it was a slow night and I was seen right away. The doctor I had this time was fabulous. They were concerned by my right sided weakness, spasms and other issues so they admitted me based on vomiting and dehydration. I have been here 24 hours with little sleep but today they seem to have found a better combination of meds to help with the pain as well as help me not be hyper on the pain meds. I still can't sleep but the doctor has ordered something to sleep so hopefully I will sleep the night away.

Today I went in for an EEG of the brain as well as a flexion/extension X-ray of the neck. Tomorrow and poss Friday I have a list of tests including a spinal tap, EMG of the muscles and nerves and other tests. The Neuro surgeon here is really good. He is so friendly, down to earth, and is being very thorough. I will keep you posted to how things go but I am just grateful to be comfortable again.

Another Birthday gift...GO Portland Trail Blazers

2010-12-01T21:44:00.004-05:00

ME and my BIG brothers!!!!! LOVE these guys!

For my birthday Sean and Jimmy got us up front and close seats to the Blazers and NJ Nets NBA basketball game. The three of us and a friend of mine all went on Sunday to the game. The Portland Trail blazers were in town for the game and we were surrounded by NETS fans who loved mocking us in good fun. Ironically though a man came and sat next to Sean and he was wearing and Oregon Ducks sweatshirt. How odd that in 1000's of seats the Oregon man sat next to us.

The Blazers lost but the game was fun to be with my BIG brothers! Here are some pictures to enjoy. They even got my name on the big screen with a Happy Birthday wish...no pictures of this though!

Happy Birthday to me!

2010-12-01T21:33:00.002-05:00

To me Birthdays are not my favorite being that it means being the center of attention. But this year was special. I had Friday off and got to go to Red Robin for lunch with my 2 brothers, nieces, and nephew. Such a fun time. When it comes to gift giving and receiving I find quality time to be so precious. What a special day to spend quality time with my big brothers and family.

I woke up and spent the morning on the phone with my mom, then met up with my family. After a brief nap, I went over to my friend Loredana's house to spend the evening with her. To my surprise a few other girls came over and we enjoyed good food and fellowship. Afterwards Loredana played guitar and we had some time of worship and then each of the girls prayed over me for a blessed and God honoring year!

A few years back when I moved to NJ I never foresaw the blessings that were in store for me. But everyday I am here I am blessed with my family, a great church, and such wonderful friends. Can't wait to see what more God has in store for me.

I have a few pictures but don't have them with me here so will post soon!

Thanksgiving and so Thankful

2010-12-01T20:46:00.002-05:00

Give thanks to the LORD, for He is good. His love endures forever!
Give thanks to the God of gods. His love endures forever!
Give thanks to the Lord of lords: His love endures forever!
Psalm 136:1-3

As the season of thanksgiving has come and gone, I have come to be so thankful for EVERYTHING in my life! God has blessed me abundantly in the good and the not so good things in my life. Thursday I worked from 5am to 3:30 at the hospital celebrating thanksgiving with my patients in the hospital. It was so encouraging to spread a little thanksgiving cheer to those who are alone that day and not feeling so well. After work I went to my Pastors in-laws house with him and his wife. It was a relaxed and great way to spend the day. Unfortunately because of work I was not able to join Sean and the family out in NY for the holiday.

I had a blessed and filling day however, God is showing me that Thanksgiving is SO MUCH more than a day of eating and eating and more eating. It is a day to be thankful for all that we have been given. After so much suffering the early Americans enjoyed thanksgiving because they knew that God had brought them to where they were and offered them so much even in the suffering and death they experienced early on. Thankfulness is a perspective and I am learning to be thankful even in the difficult times.

This year has not been an easy one as I deal with illness and the chronic pain that comes along with it. I have had to put running on hold, and have had to not be so involved in ministry and friends because of the time I need to rest and deal with the issues. However, despite this I would term this as a year of learning to be thankful:

I have learned the bond of family!
I have learned how strong I really am!
I have learned I have some REALLY good and faithful friends!
I have learned new ways to cope in difficult times!
I have learned the new skill of knitting (hats, scarves, purses, sweaters)...who ever thought a type A personality like me could learn to knit and enjoy it...but even knitting I do with a type A mindset. HA HA!
I have learned that God is my every strength in times that are good and times that are bad.
I have learned that God never leaves us or forsakes us!
I have learned that God is faithful to provide in SO many ways!
I could go on and on and on but I think you get the gist.

I pray that each day of my life I will remember to be thankful in all things. I also pray that each of you can find that same peace that comes from the thankfulness and peace we gain when we are saved by JESUS CHRIST! "Jesus is the way the Life and the Truth!" In learning this in my life I have learned a new peace and thankfulness that I have never known in my life.

Thank you for your friendship and faithfully pouring into my life in whatever way that might be!

But thanks be to God!
He gives us the victory through our Lord Jesus Christ.
I Corinthians 15:57

Chiari Institute Part 5- Surgical appointment

2010-11-09T11:15:00.002-05:00

About a week ago, I had my appointment at the Chiari Institute with the Surgeon. Dr. Bolgonese was fabulous and sat with us for more than an hour to explain everything, including all the factors they are looking at in determining what the best plan of action is.

The gist of what I walked away with is:
1. They want to do a spinal tap in order to 100% rule out MS. This is to cover all there bases because one of my original doctors had said MS is still a possibility. So he feels the responsibility to rule that out despite possible complications with chiari and spinal taps. MS is normally ruled out by an MRI, which they did for me. However, there is less than 5% of MS patients who have MS but it does not show on the MRI. In these cases the only way to rule out MS is through a spinal tap. Unfortunately so far the soonest I have been able to schedule my spinal tap is Dec 27th which again postpones the surgery. I am still working on trying to get it sooner but have not found anything yet.

2. He and 3 other doctors are going to go over my case once more to come up with a consensus as to the best option for surgery. This is a way of double and triple checking as well as providing safety. I really appreciate knowing that they go to such extents to make sure they are doing what is best for me.

So right now the dilemma is to confirm 100% that MS is not a factor which the doctor feels confident is not an issue. The second dilemma is which surgical option is the best. There is one surgical procedure that would be less invasive and require a very short recovery process to attempt to fix the problem. But unfortunately people who have this can 6 months or a year later have the symptoms back and end up with the more invasive surgery. As much as I would prefer to have the less invasive surgery and get relief, I worry that I will be one of the many who has to end up having the second original surgery which means a longer delay and more money.

Right now, I have to trust God to guide the doctors to the best possible outcome. I am asking Him to give me a peace and prepare me for whatever the 4 doctors determine is the best option for me. I had peace about the brain surgery, and felt ready to take on the challenge. However, this new factor is a little tougher for me to handle. I want to be done with all this, the pain and lack of being able to do my normal routines. I miss running, and being active. It is very tough for me to be forced to slow down and take the lounging around that I often have to do because of the fatigue and pain. I feel lazy.

My mom taught me how to knit this summer which is helping keep me busy. Before being sick I thought I would never settle down enough to be able to knit. Now, it is something I can do to keep my mind busy and feel like I am accomplishing something. I have knitted hats, scarves, and now I am working on 2 purses. I will post some pictures of my work soon.

Despite my frustrations, God is ever faithful. I wish I could recount all the ways He has shown Himself faithful on a daily basis. Today in my devotional I read a story that impacted me and I hope it encourages you.

I Thessalonians 5:14
We urge you, brethren, admonish the unruly, encourage the fainthearted, help the weak, be patient with everyone.

The Weak and The Afflicted

During a visit to an East Africa hospital, I met a 10-year-old boy, Joseph, who is severely disfigured. A nurse explained that when Joseph was an infant his mother set him on fire. Though he miraculously survived, his left leg was burned to a mere stub. His right is permanently bent backwards, with webbed toes that were heavily damaged by the flames. Joseph’s left hand is missing two fingers, and, despite multiple operations, his wrist bone protrudes from the skin.

I held Joseph as the nurse changed his bandages, and was amazed when he confidently said to me, “The Lord’s going to make me well!”

I believe Joseph is right. Though I don’t know when or how God will bring healing to the child, I trust Isaiah who prophesied that one day the Lord will come, “and when He comes, He will open the eyes of the blind and unplug the ears of the deaf. The lame will leap like a deer, and those who cannot speak will sing for joy!” (Isaiah 35:5-6).

But for now, we live in an age where homes and communities around the world contain broken, hurting people. These individuals, like Joseph, are in dire need of our love and care. The apostle Paul told God’s people to “take tender care of those who are weak” (1 Th. 5:14).

His words echo the words of King Solomon in Psalm 72 as he implored God’s people to: • Judge others in a right and righteous way (v.2). • Let the poor always be treated fairly (v.2). • Defend the poor and afflicted (v.4). • Rescue the children of the needy (v.4). What can you do today to be a blessing to a physically impaired person in your community? —Roxanne Robbins

Chiari update!

2010-10-26T21:01:00.002-04:00

Friday is my big appointment with the surgeon. From here I am expecting that there will be a plan and date for surgery finally. It is difficult to think of much else. I have had a few weeks of feeling OK and I think I attribute it to a medicine they tried. However, the medicine took a few weeks to get to the full dose and by time I got there I had trouble with my heart rate going as high as 120. I was short of breath just walking a few steps, my muscles felt so extremely fatigued that I could barely hold my arm up to write my name on the white board in patient rooms at work. They did an EKG and said everything was fine but that I needed to come off the medicine. The medicine helped some with the pain and headaches and gave me a ton of energy. Now that I am fully off of it as I Sunday, I have crashed. I barely stayed awake for work today and I am ready to go to bed at 8pm. I am looking forward to being done with all this.

Lord, may you guide each and every step that I will find ultimate healing but most importantly Lord that I will draw closer to you. You have changed me through these circumstances and I would not trade the experience for anything, for that reason alone! Thank you for your peace that passes all understanding and fills my heart.

The crew and our Corn Maze adventure!

2010-10-26T19:52:00.004-04:00

Last Saturday, a group of us from church decided to take a small group to a corn maze in Western NJ. The Corn maze was divided into sections by colored ribbon and in each section we had a few sketches to color, and questions to answer. Our job was to figure out how many in each color section, and then to find them. Then once all were found, we made the task of figuring out our exit. It took us over 3 hours to complete, but it was a lot of fun!

The map at the beginning of the Journey!!!!

And the crew starts out fresh, and ready for the challenge!!!!

The farm in Chester, NJ boasts a 10 acre life size maze! Chester is in Western NJ about 45min from where we live. It is a gorgeous area...I could see myself living out there on a farm.

Yeah!!!! We found our first station in the corn maze. We could have just found our way through the maze to the end but we decided to take the challenge of finding all the stations along the way. Each one either had sketch we colored in or questions we answered.

Random wood bridges raised us above the corn maze but it never really gave us much clue to where to go. Sometimes it helped thought to gain some perspective, like we are in the middle, the edge, ect)

The big debate....Which way should we go? Standing atop the bridge we attempted to decide what our best plan of action was. As a group we had to agree to move on...

Ricky who stole my camera to take a picture of himself! He is known for being a bit crazy!

My very good friend Lisa! We often hang out and have dog play dates! Love this girl!!

Ricky and Russ (Lisa's Husband). Enjoying the challenge.

Annette (Ricky's wife), Lisa, and I posing while on a break in the corn maze!

German proud of this find.
We finally found a station that had eluded us for much of the maze!

Pastor Tim boasting about our toughest challenge yet. We managed to walk right by this station (which was at the very beginning) and had to back track a good distance of the maze to find it again.

Ricky falling to his knees in relief as we found the last station! He had gone around a corner and started yelling "I Win, I win!" First off this is a team thing, haha and second off he had become known as the boy who cried wolf so at first none of us listened to him. We were all getting tired and hungry by this point and once we realized he REALLY did find the last station we were so relieved.

Stephanie, myself, and Lisa at the end of the corn maze!

(Left to Right: front row: German, Pastor Tim, Michelle, myself, Stephanie
Back Row: Lisa, Russ, Jonathon, Ricky, Annette)
The entire crew...WE MADE IT!!

Following the corn maze we ventured off to Houlighans for dinner and fellowship before ending the night at Pastor Tim and Michelle's house for coffee and desert. It was a long day but so good to spend it with friends and a definite break from the challenges of daily life. I was really glad I felt well enough to make the adventure....It was well worth the fatigue.

Fellow chiari Commrad

2010-09-30T21:41:00.002-04:00

This week I had the opportunity to meet up with a nurse from my hospital who had Chiari Surgery in 2006 by the same surgeon as I am going to be having surgery with (Her mom also had the surgery in 2004). It was a great opportunity to share stories and get a feeling for what to expect. It was great to have someone who has been through exactly what I have been through. She had chosen to put off her surgery out of fear and uncertainty and that was her greatest regret. Because of putting it off she said she got worse and said that some of her symptoms were irreversible. Her greatest piece of advice to me was to get the surgery done as soon as possible and that it was well worth the difficult recovery.

God is so good! Providing just what we need when we need it. I loved the confirmation this was for me and the encouragement I got from this time I had in this meeting.

Chiari institute Part 4

2010-09-30T20:56:00.002-04:00

After what seemed like a life time, I had my appointment at The Chiari Institute! I met with the neurologist again for a follow-up visit. The medicine they tried helped only a little but the side effects were too much for me to deal with. The decision was to send me to the surgeon at the end of October to pursue surgery. Surgery is really the only treatment for Chiari anyway and was what we figured would be the direction we would be going in the long run. The doctors at the Chiari institute wanted to do their due diligence and make sure that what I had was true Chiari, which is a herniation of the brain and a narrowing of the base of the skull. You can have a herniation of the brain for other reasons besides Chiari. So the past few months they have run a series of tests to rule all this out and have come to the conclusion that I have a true Chiari herniation.

Many people would say, well you seem normal, why would you change what is fine? I am not fine. I have some good days but most days I am not fine. I have serious fatigue. I don't sleep through the night and have a difficult time working an 8 or 10 hour day. If I could go out on disability now I would but I can't afford to do so. I often work and come home and do nothing more. I have chronic pain in my joints and muscles. I have headaches that start at the base of my skull that don't compare to your everyday headache. When they are severe, I can't lay down because it feels as though someone is hitting me with bricks. The headaches are caused by a build up of pressure in the brain due to the fluid being blocked and not allowed to flow freely. Some days the pain in my legs are so bad I crawl up my stairs. I have weakness in my legs and arms especially the right side. I often stumble and trip because my leg doesn't work. My memory is effected, my bladder is effected...and i could go on and on and on.

The next step is to meet with the surgeon on Oct 29th. From their they say they may do one more procedure and then schedule surgery. Surgery is the process of opening up the back of the skull and the brain to release the pressure on the brain and take pressure off the nerves. It is much more detailed than this and is a 9 hour surgery and a long recovery. I am trusting the Lord to provide for the finances and the timing of every detail of this surgery. Please pray for the doctors and their hands as they do such a delicate surgery. Thank you to all who have sent me notes of love and encouragement through this time. I feel so blessed even in a time of difficult challenge. I truly can say I have such an incredible peace about the whole thing. It is a peace that passes all understanding...one that could only come from God.

"The Lord is my Shepherd I shall not Want. He makes me lie down in green pastures, He leads me besides quiet waters, He restores my soul. He guides my paths of righteousness for His names sake." Psalm 23

Thoughts....

2010-09-16T20:04:00.002-04:00

With my appointment at the Chiari institute being less than a week away now, I have a lot on my mind. I feel a bit of apprehension at the thought of this upcoming appointment. The blessing of having Chiari malformation vs Multiple Sclerosis is the fact that chiari is fixable and MS is not. However, there is a sense of nervousness as I realize that these doctors have the final decision in there hands. Part of my nerves come from a worry that they may delay the decision again which I am not sure I could take. However, I guess I would rather that instead of them saying no.

After taking a bad fall this week because I am having problems with my right leg not always listening to what my mind tells it to do, I am annoyed by the frustrating and increasing symptoms. However, even though I want to have the surgery and therefore the possibility of relief I sense God is calling me to a difficult decision. I feel as though He is not preparing me for a no or a yes but to come to a place where I am willing to accept whatever happens. I don't feel this is a place of giving up really but in reality a surrendering to God and His will for my life. I am not giving up the fight by any means because either way I will be in a fight. Either a fight to maintain as normal a life as I can with the symptoms I have or a fight to recover from a major surgery. Either way I am in for a fight but that fight becomes that much easier when it is one I am fighting with God.

I am a very independent person and for so long I thought "I don't need any ones help, I can do it myself." But that attitude doesn't help in the long run. I have been learning to surrender things to God and trust in His will for my life. I have found that the road is much smoother that way. This situation is no different and as I can fully trust God with this I will have the peace to deal with whatever comes! I continue to pray for healing, and if necessary for the surgery that can bring healing. But I am learning to rest the situation in God's hands and trust His will for me and His plan.

"My grace is sufficient for you, for My strength is made perfect in weakness. Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong." 2 Corinthians 12:9-10

More drama

2010-09-11T22:18:00.002-04:00

Today was a beautiful 80 degree day and I made plans to drive to the shore and meet my friend Carmen for a nice day on the beach. About 15 minutes away on Hwy 33 I was driving and pulled over immediately when a young boy who tried to cross the highway was hit by a car at 45 or 50mph. The boy was in critical condition. Myself and a medic cared for the boy while we waited for police and medics to arrive. When they arrived I helped them load the boy onto the board and breathed for him while they secured him to the board. The young man was not responsive and had a very faint pulse. He was bleeding from the head and probably dealing with many broken bones. By God's grace he was hit 2 blocks away from a major trauma hospital. Many areas you would have to be transported a ways just to get to a hospital that could care for such injuries. Tonight, I am saddened by what I saw but praying that God has taken care of him and given strength to his family. I also pray for the driver who must be traumatized by the entire situation.

Please pray for this young man and his family. I may never know the outcome till I reach heaven but none the less I know that God hears our prayers!

Chiari Institute part 3

2010-09-11T22:15:00.002-04:00

I am a week and a half away from my next appointment at the Chiari institute. In the mean time I have two more tests to finish and then really hoping for a final decision at this appointment. Meds have not worked and I am ready to finally put this issue to rest if at all possible. This time last year I was training for a marathon and now there are days I am crawling up my stairs to my second floor apartment. God has been faithful on a daily basis giving me the strength to get through each day and to maintain working. I look forward to seeing his continual provisions in this area of my life.

Chiari institute Part 2

2010-08-24T20:20:00.002-04:00

I have not yet returned to the chiari institute for the second time but I am a little over a month into my 2 month attempt at trying some medicine they were hoping would help the headaches. The goal was to get it to 750mg and I made it to 500mg. It helped the headaches some but not so significantly that the side effects (dizziness, lightheadedness, needles in hands and feet, change of taste, and nausea) were worth suffering through. I gave it a good 5 week trial and really had a tough time with the side effects.

This weekend was one of my more difficult in a while. I had a headache Saturday while at a bbq that really wreaked havoc on me. Even my dilauded (strong pain med) was not enough to touch the pain. Prior to this I was really blessed with one of my first reprieves in a long time. A week of no headaches, decent energy, and significantly less pain. It was a reminder of how it feels to feel good. Without that short reprieve I don't know where I would be as I was getting to my limit. I'm not sure what my limit looks like or how I would act but it is tough to work day in and day out with this. I am too much of a fighter to let this get the best of me but I guess even the best fighters have their down moments.

I have one more specialist appointment next week and then I will return to the Chiari institute Sept 22nd. By God's grace I will get some answers this next go around.

Psalm 113
¹Praise the LORD!
Praise, O servants of the LORD,
Praise the name of the LORD.
Blessed be the name of the LORD
From this time forth and forever.
From the rising of the sun to its setting
The name of the LORD is to be praised.
The LORD is high above all nations;
His glory is above the heavens.
Who is like the LORD our God,
Who is enthroned on high,
Who humbles Himself to behold
The things that are in heaven and in the earth?
He raises the poor from the dust
And lifts the needy from the ash heap,
To make them sit with princes,
With the princes of His people.
He makes the barren woman abide in the house
As a joyful mother of children.
Praise the LORD!

The Chiari Institute Part 1

2010-07-26T21:46:00.002-04:00

On Tuesday I went to the Chiari institute for my initial consult. My friend Carmen came with me as a support which was a great blessing. When we got there we waited about an hour before we finally met with a nurse. This particular nurse is the nurse who is assigned to oversee my case. She had me fill out paper work and went over my history for an hour. When she finished she had us wait in the lobby while she presented my case to the neurologist. Once we got in with the doctor we spent more than 4-5 hours with him and did not finally get out of there till 7pm. That is a total of 7 hours.

The doctor was very thorough in his exam and history taking. In the end I realized what seemed like would be a given, I would have surgery, turned into a much more complicated situation. First off he has confirmed that I have a connective tissue disorder called Ehlors Danlos syndrome. This condition makes having the surgery to fix the Chiari much more complicated. On top of that they believe that I have a condition called tethered cord syndrome which prevent the spinal cord from moving freely. This means that if I have tethered cord I will need a surgery to fix it. This means a few days in the hospital and a short recovery. However, that still leaves the debate of whether surgery for my Chiari is the best option. Currently I am having more tests and then will meet up with the doctor again in 2 months to reevaluate and hopefully come to some sort of conclusion.

The appointment was encouraging because I finally found someone who knows what they are doing and understands what I am dealing with. Most days are a challenge now to just get through. I am still working but often can't do anything more than that. However, the discouraging aspect is that I may have to come to a point where I must accept that things wont improve. I am trying not to think about that part just yet. I am trying to focus on the hope that there is a treatment and that maybe I can be treated and move on.

Recently I returned to a Psalm that has often given me hope out of the Bible.
Psalm 121:

I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip
he who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
The LORD watches over you
the LORD is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.
The LORD will keep you from all harm
he will watch over your life;
the LORD will watch over your coming and going
both now and forevermore.

The Japanese Gardens

2010-07-13T01:17:00.006-04:00

We took a few hours to walk through a beautiful Japanese Garden. The Garden was green and very peaceful. I felt like I could spend hours here in the presence of incredible beauty.

Me at the entrance of the garden!

Aunt Sheila and Uncle Pat

Enjoying some rest

Hot Chocolate in July...San Francisco is not very warm especially when you just came from New Jersey where it had been upper 90's and humid.

A fun Bridge!!!!

Kite Flying in San Francisco

2010-07-13T01:00:00.006-04:00

While we were at the beach in San Francisco we had the opportunity to watch some professional kite flyer's. Each of these rows of triangles is a different kite controlled by a different man. Then men would rotate around each other moving there arms in different ways to cause them to rotate around one another in a spectacular show. It was very impressive and something I have never seen before.

The San Francisco Ocean

2010-07-13T00:54:00.005-04:00

While in San Francisco we stopped by the ocean which was an amazing site. I miss the West coast ocean. It is such a rustic beauty.

This was apart of an indoor swim hole that they used to swim in. There were pools for women and pools for men. They wore swimsuits made of wool. Kind of a scratchy swimsuit.

This looks like a Jersey sign....blunt and too the point.

An old time windmill right off the ocean.

Uncle Pat enjoying the view of the Ocean from our dinner table.

A view of San Francisco from Twin Peaks

2010-07-13T00:48:00.007-04:00

This is a view of San Francisco from twin peaks above the city.

A day in San Francisco

2010-07-13T00:46:00.007-04:00

I took a week to travel to the West coast to visit family and friends. I flew into the Bay area where I spent 2 days with my Aunt and Uncle. This is a big park in the heart of San Francisco where they have rose gardens, museums, and small parks.

A family of Turtles hanging out on the rock.

A Road block but not a wall!

2010-07-03T23:47:00.004-04:00

I have faced many road blocks in my life. I see them as a challenge that I must face and which only makes me a stronger and better person. In January some physical symptoms I had for the past two years had escalated to a point I felt I needed to follow up with them. The doctor I had was very concerned and sent me to both a Rheumatologist and a Neurologist. After some blood work and a thorough MRI they found that I did not have M.S. as they had been concerned about but instead found I have a rare condition called Chiari Malformation I.

Chiari is a condition in which the cerebellar tonsils of the brain have herniated through the hole at the base of the skull where only the spinal cord should be. This particular condition they believe is something you are born with. In the kind I have symptoms often do not present problems till your 30's. It often mimics M.S, Chronic Fatigue, and Fibromyalgia which I have been misdiagnosed with over the past few years. The only treatment for this condition is surgery. I was diagnosed in April and am slowly working through the process with doctors to determine what is the best step for me. It is a major surgery which I would absolutely love to avoid but medications are not working to control the pain, headaches, weakness, fatigue and other symptoms.

July 2oth I will be being seen at the Chiari Institute out on Long Island where they specialize in the treatment of this condition. In preparation for this appointment they have sent me for multiple Xrays, MRI's, and CT scans. Based on what they see and the thorough 2 hour evaluation they will determine what the next step is for me.

For me, finding out I have Chiari is in a weird sort of way a relief. I have had many, what seemed like, random symptoms and no one could put a finger on the cause or the best way to treat this. When they thought it was M.S. I was very nervous because I know that there is no cure for that. When I read the symptoms for Chiari it was a perfect match and the fact that there is a treatment is also a blessing. The only concern is whether there has been permanent damage to the nerves which may mean I wont have complete relief of the symptoms. However, I am being diagnosed much earlier than the average person so we feel that the likelihood of that along with the ebbing and flowing of symptoms means that the nerves have not been permanently damaged.

As challenging as this has been, I have been blessed with a God who promises that He will never leave us or forsake us...even in the most difficult situations. I see this as an opportunity to grow and learn. I have also been blessed with a great church who has surrounded me with love and support through this hole process. I don't know the outcome but I know that I will be OK in the end.

Fourth of July

2010-07-03T23:46:00.003-04:00

Today after church I went to my friend's Lisa and Russel's house for a BBQ and fireworks. It was a new group of people than I usually hang out with but it was a very solid and encouraging group. Today was 97 degrees but thank God the humidity was low so we just hung out by the pool and relaxed. Then we went to the town fireworks to end the night.

In NJ personal fireworks are illegal. So instead most towns put on a firework show. Not all towns do it on the 4th. Here you could go to a different town each night and get a firework show for a week. I enjoy this concept because then you aren't listening to the neighbors run fireworks all night long. Besides its neat how entire communities come out and spend a little time together.

Fourth of July is such a blessing because we are able to celebrate our freedom because of the service men and woman who have sacrificed for us. Thank you to our veterans and current soldiers for all they sacrifice for our country.

BBQ

2010-07-03T23:37:00.002-04:00

Today I went to a BBQ at one of our pastors' houses. There was a ton of people throughout the day. It was such a beautiful day though a bit hot at 90 degrees. Between the good bbq and the fellowship I had a blast.

I learned a new game, I believe it's called the tailgate toss. It's kind of like horse shoe except you have 5 bean bags and you have to toss them at a slanted board with a hole in it. If you get it in the hole you get 3 points, on the board is 1 point and if it doesn't land on it then you get no points. You are competing against someone else. This was quite the game for my competitive nature. I must say I am addicted.

I am so blessed by the friends and the church I have here in NJ. I really thought I would come, attend school, and move. However, I must say, I am so connected now that it would be tough for me to leave. God has been good to me!

A new dog?!?!

2010-06-30T21:25:00.002-04:00

Yesterday at 5:30 am I was out walking Faith before going to work. While out we found a beautiful female German Shepherd who was scared and alone. She had no tags so I decided to let the two dogs run around and play for 20 min before I took off, in hopes that the owner might come looking. When they didn't I brought it home and settled her in. She is about a year old and I decided to lock both dogs in the kitchen while we were at work.

At 4pm when I came home from work I learned real fast that this dog has no manners and was not potty trained. Whoops. Thank God for linoleum. After cleaning up quite the mess I took them for walks (mind you the dog doesn't even know how to be on a leash). With in minutes the owner came up to me frantic. Lets say that as much as I want to get a second dog, I was more than willing to give this dog back. I am not a firm believer in the saying that "you can't teach an old dog new tricks!" However, this one would have been a handful. I look forward to having a puppy and companion for Faith but I am reassured that the older dog is not the best idea for me.

Finally a new post

2010-06-30T21:12:00.003-04:00

So I think I now fall into one of the biggest slackers when it comes to blogs. Life has been so crazy that I have been lazy when it came to blogging. I am going to try to catch you up without overwhelming you.

It is only the end of June and we have already had way too many 90 degree days! This week alone we have had 3 or 4. Luckily most days the humidity has not been too bad but that is coming. Last summer I was blessed as we only had one day in the 90's. I love warm weather but the thing I have never gotten used to is the humidity that we get here. When it "cools" down at night to the 70's the humidity rises so it really doesn't cool off. Gone are the days of simply opening windows to cool down. Here we rely on AC's in order to cut down the humidity which just seeps in.

So it looks like after a winter with frigid temps and tons of snow, we are now facing a whopper of a summer. Good thing I have found people who own pools. :-)

17 inches of snow

2010-02-21T00:51:00.005-05:00

We got hammered!!!!! 17 inches of snow! I love snow so it doesn't bother me and here the city does not shut down because they are so great at clearing the roads. Even the side roads are cleared. Below are some beautiful pictures from this latest storm to hit us. I have lost track of the amount of snow storms we have had. I must say that if it is going to be this wicked cold then snow makes it worth it.

A salt truck/snow plow. They do wonders for us.
Oh how we love these guys. though good luck getting your car out!
The snow was so deep Faith couldn't even walk she had to hop like rabbit.

WAY too long since I posted!

2010-02-21T00:03:00.007-05:00

It has been way too long since I posted. I have been so crazy busy I have hardly been checking my email. Things should begin to slow down a bit now and I will try to catch you up on a lot of miscellaneous stuff in this email.

Mom visits:
My mom came for a little over a week during Christmas. She alternated staying at Sean and Sarah's as well as my place.

Me and the girls! The little one has held onto the brown hair like her mom.

Enjoying some baby holding time!

Grandma with everyone except my nephew. He would join the picture so his friend stood in for him.

While she was here she got the privilege of a foot of snow on her first weekend here. She loved it!

Faith loves to play in the snow. This year has been a good year for her. This is her after making a doggie angel.

Another creation of Moms...She made my nephew a star wars stain glassed window. Wow...it is good!

Star Wars Stain Glass window...hand made by mom!

Boys will be boys...but she seems a bit scared of where that sword might go!

Such a sweet picture...He loved his gift. He had been asking her to make one for him for quite some time.

New Years party:
Since I have not been so consumed with nursing school this year, I have had the opportunity to make great friendships with a number of people in my church. There is a large group in our 30-40's who enjoy spending lots of time together. For New Years a bunch of us from church got together to ring in the new year. I learned how to Salsa dance which was a lot of fun. Our church is very mixed but has a lot of Puerto Rican's and Italians which makes for a lively group.

Nursing Exams:
I have finished all of my nursing exams. Now I am in the process of attempting to schedule my 2 1/2 day clinical exam somewhere. They say the wait is 3-6 months. I am praying for a shorter wait. In the mean time I am finished apart from this. So this is such a relief.

Exam 6 of 8

2009-12-17T16:00:00.003-05:00

So today, I had my 6th exam. And despite my lack of confidence I pulled off an A!!!! yeah. Even with all the studying I did, I felt very unfocused and was having a difficult time sitting to study. But despite that, I guess I was retaining some info. This exam covered Cardiac (Failed that exam in school), respiratory, and Cancer. None of my strongest topics in school only because they are so detailed and you have a lot of medications to know. But this time around was a success. I have my last two exams scheduled for the first week of January.

Once those exams are finished I will do a Focus competency exam where I demonstrate I am ready for my clinical exam. I have 10 days to complete it and then I can schedule my clinical exam. So close and so far away. I am definitely ready to be done.

Thanksgiving/Birthday

2009-12-17T15:55:00.003-05:00

This year, for Thanksgiving I had to work in the morning. Because of this I could not go with my family. However, I did get to go with my friend Carmen down to Southern NJ and spend the evening with her family. It was a fun and lively group that I felt very comfortable with. Carmen, let on that it was my birthday, so her father played guitar and sang happy birthday to me in Spanish (they are Puerto Rican) and English.

I spent the night there and the next day we went to her sisters condo just outside of Philadelphia. We even went into Philly and I had my first Philly Cheese steak. Hmm it was good!

For my 31st birthday, which was on Thanksgiving this year, I invited a bunch of people over the first weekend in December. It was fun to have my brother come and meet some of my peeps. It was a good group of people and a good time. Some how I didn't take any pictures but maybe next time :-)

Philladelphia Marathon!!!!

2009-12-17T15:50:00.001-05:00

On Sunday, November 22nd, 2009 I finished my second marathon. I had been training for 6 or 7 months for this race. My training went extremely well and I had a goal time of sub 4 hours. But as marathons are unpredictable I had some issues at the end of my training that forced me to not finish the way I like. So when Marathon day came around, I was truly uncertain if I could finish. By that point I just wanted to be less than 5 hours. The morning was a beautiful, clear, sunny and crisp day. The start was an unseasonably warm 40 degree one. By finish it was in the 50's. This is perfect weather for a marathon. Not too warm is the goal and no rain.

At 7am I stepped into my race corral. The official start time is 7 am but with a wave start it takes a while to get going so that everyone is not running on top of each other. 2o min later I crossed the start and began a long journey to the finish. The challenge to a marathon, unlike any other race, is that the longest distance you do before had is 23 miles. So on race day...it is a whole new distance. Also you can never plan how you are going to feel. You may have your worst training leading up to it and have your best marathon! Or you may have great training and have a bad marathon! My training was a mix. The unforeseen challenge I had was near the end of the training. I work on my feet at a hospital where I often walk 20,000 steps, mind you the average person gets about 3-5000. So I did not take this into consideration as I got to my very long training. I began having trouble with my legs not recovering. So I ended up running very little for the last 5 weeks or so. About 2 weeks before the marathon I pushed through a 12 mile run to make sure I could handle it and that was the most I had done in weeks. Not a recipe for success.

The first few miles were good. I began to feel lots of pain around mile 12. It was tempting to split off with the half marathoners (13.1) and finish early. But I continued on. Every mile was my only goal for the last 1/2. I would tell myself, "you can't quit till the next mile!" That mile would come and go. I had constant encouragement around me when I would least expect it. I had people who were tracking me and they would send me a text message telling me how I was doing...and that I could do it. Fun!!! And yes I had my phone on me. A runner always has her phone on her. What happens if you get 13 miles out from your house and can't run back...I need to be able to call someone. I carry a belt that holds fluids and my shot bloks (gel blocks that I can eat to maintain my energy and electrolytes).

When I crossed the line I could see Trish on one side and Audrey on the other. The other cool thing about this race is that they had our first names on our bibs. So as you are running people are yelling out your name to encourage you. You feel like you have so many fans.

I bundled up and made a very slow, painful walk back to the hotel. My first marathon didn't hurt like this...because I was able to train more and I had a different type of job. In the hotel, Trish called for 2 buckets of ice and I took a VERY cold Ice bath! brrrrr! It helps with inflammation and shortens your recovery. After that we headed to a restaurant called Marathon grill where I proceeded to devour a gigantic Cheese burger. For whatever reason after my long races, all I want is a cheese burger. I guess it's the protein and iron.

I enjoyed this marathon in a different way then I did my first. God spoke to me a lot as I ran. I had my i pod on and listened to worship music. Along the way I would find myself in tears. I am learning more and more that as independent as I am that I truly can't do anything with out God. "For I can do ALL things through Christ who strengthens me!" That truth was more real to me through this marathon than any other experience in my life. When we are fully abandoned to God He can do amazing things in our lives. Is this marathon the amazing thing....probably not but it is an example of how he can do great things! I hope I never forget that in my life.

The Philly marathon Expo where I picked up my packet and shirt!

There are a lot of Campbells but only one SaraJane Haha! This is just a small list of the 20,000 runners!

Hanging out in our fancy hotel in the heart of Downtown Philly, and walking distance to the race. I love discount websites :-) Though the downfall was our great city view...that was the rooftop of a building with a half empty Gatorade bottle.

Relaxing on a fun chase lounge. One of these days I am going to own one...they are so comfy :-)

Me at the finish. 4 hrs and 40 min. No where near my goal time but great considering I was hurting by mile 12!
Post run with a view of the city. Everyone else was sitting but I couldn't bare to try to sit on the ground and then get back up again.

Post race meal at the appropriately named Marathon Grill. My usual a gigantic Cheese burger....That's all I want after a marathon.

Trish (left), me, and Audrey (right)! They came down to celebrate my marathon with me! Most races I come to the finish and go home. This time I had someone to celebrate with.

Thanksgiving Home fellowhsip!

2009-12-17T15:34:00.004-05:00

Every 3rd Friday of the month a group of us get together for Home fellowship in Jersey City. It is a time of worship, bible study and a LOT of fellowship. We get together around 7 and sometimes don't leave till 1 or 2am. We are just a fun group of goofy people who enjoy hanging out. Sometimes it is making up songs about someone or whatever.

In November we changed it up a bit and had a Thanksgiving Home fellowship! We went to our friend Sal's place where he catered good Italian food. There was a DJ and we just hung out, danced and talked. It was a good time.

Since, I am no longer in the nursing program, I have lots more time to hang out and I have been truly blessed by these new friends. Sundays after Church, Wednesdays after Bible study, and on the weekends we often hang out late. God has truly blessed me with friends that are such an encouragement to me.

_______________________________________

My friend Trish and I!

Curt (left) and Jared (right)
Curt is an Oregon State fan all the way in NJ. His father went to OSU. Not many Oregon anything fans here in Jersey...so we have fun ribbing each other...and I must say my team came out on top in the Civil war. Yeah Oregon :-)

One of the young boys, maybe 5, got a hold of my camera and took all the pictures on here except the top and bottom. I think we have a future photographer.

His shoes. We had lots of pictures of the floor and people's shoes. Very artsy!

Meredith and I. She is my fellow nursing student...different programs but we get each other. We understand the stress called nursing school that is unlike any other schooling.

Philly Marathon update

2009-11-09T22:38:00.002-05:00

So It is less than 2 weeks away I run the Philadelphia Marathon. I am really excited but at the same time apprehensive. I am not as well trained as I have in previous experiences which can make for a difficult time. I had some physical issues that kept me from running for the past 3 weeks. Last night I ran 12 and felt ok. But I never got as many long 20 mile runs as I had hoped. So this will prove to be an interesting experience and I am sure more painful than hoped. But I am looking forward to the challenge.

I am looking forward to the experience. I have a hotel room down there and some of my friends from church are coming to cheer me on. I will keep you posted.

Nursing Update

2009-11-09T22:30:00.002-05:00

So I have finished 5 of my 8 exams. I have been pathetically consistent with straight B's. That was until test 6. I did not do well on that exam and unfortunately I have to redo it. The bad part about that is that I have to wait 60 days to retake it. This really puts a cramp in my plans of being done with the 8 exams by Thanksgiving. They won't let me schedule the Clinical exam until I have finished the 8 exams and the clinical exam is 3 to 6 months out from the time you apply. Ugg. this could place me with finishing at the same time 1000's of other NJ nurses are finishing there programs in April. Why does this matter? Well, the wait time for the NJ State board of Nursing exam I have to take goes from a 3 week wait to a 3 month wait. And also then I am jumping into the job market with all these nurses. In a country desperate for nurses...NJ is one of the few states that is not actively seeking new grads. This is due to so many hospital closures in the past few years.

I guess there is no need to worry about what tomorrow holds, and just focus on today. It is not like God has not been incredibly faithful through this entire process along the way. So tomorrow I will call and hope that I miss read the info, and if not I will take a more relaxed approach with my tests since I now have 2 months to finish.

2009-11-09T21:54:00.003-05:00

The NY Yankees made it to the World Series and a few friends and I managed to get some tickets to go see them at the new Yankee stadium. It was an amazing opportunity and so much fun. Enjoy some pictures. And by the way the Yankees won the World Series! I am a Atlanta Braves fan but they didn't make it so I chose the home town team to cheer for. Besides Philly is in the same league as my Braves :-). Besides it was fun to pick on the Philly fans.

My friends Michelle and Manny at the world series.

Go Yankees!

Being kept safe by the sharp shooters! It's a different world in NY.

Michelle and I

The flag and our Military troops who were honored at the world series. I love this photo!

We moved

2009-11-09T20:59:00.005-05:00

It has been a month and I am finally posting some photos of our new apartment. We moved into a 3 family home earlier in October. It is in a nice neighborhood in Bloomfield, NJ and is close to the main part of town with lots of restaurants and more hair and nail places than you can imagine. I won't be using them :-). It has all hardwood floors, is bright and airy as well as roomy. It has 2 bedrooms and a 3rd room for an office.

Our very big kitchen. Not fond of the yellow but love the space.

Looking into the kitchen from the dining room. My room is on the left.

Our front porch. We are on the second floor.

Our living room. I removed the carpet so now it is nice hard wood floors. I love the windows....Makes it so bright and airy.

Our built in China hutch in the dining room.

Our stained glass window in the dining room.

Faith on moving day...she was so stressed out and out of her mind!

Faith packed in a box when we were getting ready to move.

Land of the free because of the brave!

2009-11-09T20:41:00.004-05:00

This summer I got the opportunity to go to a Freedom concert here in NJ with my good friend Carmen. It was intended to raise money for a scholarship fund for students whose parent was killed while serving in the U.S. Military. It was a great opportunity to celebrate and honor our troops who stand in harms way every day in order to protect our freedom.

This week has been a tough week for our military and it saddens me deeply that so many of our men and women who had survived Afghanistan or Iraq were killed when they came home by a man who said he was one of them. Please keep them in prayer and if you see one on the street shake their hand. Because we are free because of their sacrifice and so many before them.

Micheal W. Smith singing at the freedom concert!

Billy Ray Cyrus

Lt. Oliver North honoring scholarship recipients as well as wounded vetrans.

SWEET!!!!

2009-09-28T12:24:00.002-04:00

Today was test 3 of 8. It was the more difficult of the three so far. But as you can tell by my title I did well....once again. I got another B. When I walked out of the test room to where you pick up your results, she said, "Way to go SaraJane." At that point she handed me the paper that showed I got a B. I asked her how do others do on these exams and she said, "they either fail or barely pass with a C. You are doing great!" Sweet that is such an encouragement that based on how others are doing I am doing well. I have 2 more exams in the next 2 weeks. I may have to push back the second exam depending on how our move this weekend goes...but either way I am flying through the material and doing well at the same time. What a blessing!

Finally I post! :-)

2009-09-23T14:03:00.002-04:00

Sorry I haven't posted recently but for those of you asking...the past 4 posts are brand new. Enjoy!

32 weeks!

2009-09-23T13:32:00.002-04:00

I started a woman's Bible study on Wednesday morning through Bible Study Fellowship. This morning was the second week. It is a 32 week study of the Book of John. Wow, if you haven't read through the book of John lately...I encourage you to read it. I have been so challenged this week by it. There are something like 200 woman who come and a waiting list of people wanting to join when they can get more teachers. Each week we do our Bible study independently throughout the week and then we meet with our discussion groups and talk about the questions we answered that week. Afterwards we all meet up and a woman gives a message on what we covered.

This week was an overview of the book of John and we read all 21 chapters of it. John stated in 20:30-31 these have been written so that you may believe that Jesus is the Christ, the Son of God, and that believing you may have life in His name. The whole book is a testimony to this point. Chapter 1 points to the fact that Jesus is God and He is the creator. Jesus came that we might know God. Chapters 2-12 are a record of the many signs that Jesus performed in order that people would believe that He is God. He healed the sick, turned water into wine, walked on water. Jesus' signs prove that He is God. Not only that but He claimed to be God...All people must respond to that truth. He can't be just a good man. He is either as Hesays He is, God, or He is a liar or a lunatic. Lastly the final chapters Jesus prepares His followers for His death on the cross. Jesus, died a brutal, torturous death for the forgiveness of our sins, but He conquered death in raising again.

I know this is a lot but, if you read the book of John everything is in there. It is a book that calls us to action and in one week has impacted me in so many ways. I can't imagine what 32 weeks of this book will do for my life. Some might believe this is brainwashing but this is not something someone is telling me, this is in the Bible, something I read for myself and studied for myself. I pray that these things I am learning won't just be heard but that it will change my actions and my purpose in life.

Therefore God exalted him to the highest place and gave him the name that is above every name, that at the name of Jesus every knee should bow, in heaven and on earth and under the earth, and every tongue confess that Jesus Christ is Lord, to the glory of God the Father.
Philippians 2:9-11

Times are good!

2009-09-23T13:26:00.003-04:00

So much to blog and so little time. I am keeping very busy these days! I work mostly full-time for the hospital, rapidly finishing up school, and God has blessed me with many great friends and lots of things to be involved in at church. Recently I started working one Sunday a month in the nursery, holding babies while their parents get to go to church. And starting this October I will be joining the Worship team on Sunday mornings. Beyond that I have been really blessed with some great friendships that I have really been encouraged by. What a change from last year when I was so busy with school I didn't have time.

After church there is a big group of us that always go and hang out for lunch. 2 weeks ago 4 of us went over to Edgewater and went to the driving range. The driving range is on the Jersey side of the Hudson river and the view is of the NY city skyline. Afterwards we went and ate at Chevy's restaurant.

We're moving!!!

2009-09-23T13:20:00.002-04:00

As of October 3rd my roommate and I will have a new place to call home. It is the second floor of a 3 family home (very common here in NJ). It has 2 bedrooms, a 3rd room for an office, a large kitchen, dining room (or sitting room) and living room. It also has a small porch off the second floor and a small yard that the landlord said we could fix up and use. Boy will Faith be happy. It is all hardwood floors and even has a built in china hutch as well as a stained glass window. I can't wait to take pictures and show you all.

The amazing thing...Apart from paying heat it works out to be about as much as we pay now between rent, renting a spot for each of our cars, and laundry at the laundry mat. This one has free parking, and free laundry facilities and is SOOOO much nicer. And to top it off we get to control our own heat. Praise the Lord for that. Last winter we were freezing in our apartment and I really didn't want to go through that again. Besides, I won't have to listen to BEEP, BEEP, BEEP and the roar of loud trucks as they come and go all hours of the night right outside my first floor window.

18 miles

2009-09-22T16:53:00.000-04:00

Well, today I ran my first 18 mile run in preparation for the Philadelphia marathon. Usually I do my long runs on the Saturday but with having to work every other weekend it is a bit tough to do such a long run and then have to go stand on my feet for 8 hours and take care of patients. My job is physically demanding and is posing the biggest challenge in preparing for this marathon. My goal was to break 4 hours this time but now I feel like maybe since it is my first time doing a marathon with such a physically demanding job...maybe my goal will just to finish! I'm to competitive for that but at the same time this was a bigger adjustment than I realized.

18 miles covered 4 towns and a lot of steps. I usually use mapmyrun.com to map out a route which helps me know how far I run. The day was warmer than usual. Usually Faith (my dog) runs all of the miles with me but she has been sick so I only took her for 3 of the miles. As I have said before some days you go out and the run feels great...yes even at 18 miles. And other days it is a fight to just get through it. This run was a mix of both. By the last 4 or 5 miles I was wishing that I could switch feet like you change shoes. That seems to be the biggest problem for me is that because I am on my feet for long hours at work, they are more sore when I run these longer distances. But despite the pain, when I finished it was such an accomplishment. I love to have a goal and to meet it. Less than 9 weeks out from the marathon and I have many more runs like this. I have 2-3 18 and 20 mile runs as well as one 23 mile run before I get to the starting line. But what an accomplishment it will be to be out there running with thousands of other crazy's like me and to cross the finish after 26.2 miles. Can't wait to tell you about it.

Test 2

2009-09-16T15:00:00.003-04:00

So Yesterday I took test number 2 of 8 and I rocked it. I got a B on it. YEAH!!! I am already scheduled for the next 3 exams between now and the 14th of October. Then I will just have my last 3 med surg tests to cover. It is going quickly and is easier than I expected. I guess I learned something in that crazy program I was in. Thanks for all your encouragement!

Marathon training

2009-09-10T00:30:00.002-04:00

The marathon is 73 days away. By now, I had planned to have at least one 18 mile run done but unfortunately, I had a 3 week stretch with little running. Normally I run anywhere from 30min to an hour during the week and then on Saturday I have my long run which progresses in miles every week. I try to run at least 3 runs in the 20 mile distance before the race. You never run over 23 miles in training because at this distance it really only hurts your training rather than help it. However, due to an injury at work and some other problems, my running stalled for 3 weeks. This week, I was finally able to get out on the road and hopefully this Saturday I will do my first long run since the 1/2 marathon.

Marathon training is an amazing experience and I love to get out on the road and just run. There is no pressure, nobody talking to you, just you, the pavement, and God. It is often when I do my best thinking and processing. Though it is not easy to stay motivated and focused week after week.

I also love to take my dog. Many think I am crazy but she loves the runs. She is so happy out on the road and enjoys every second of it. She is three now and has done lots of running with me. She knows when I am throwing on my running shoes and sits by the door just waiting for me to leash her up and head out the door.

NYC 1/2 marathon

2009-09-04T19:08:00.004-04:00

August 16th I ran the NYC 1/2 marathon which started in Central park. There were over 15,000 runners at the starting line...by far my biggest race I have been apart of. It was amazing to be around so many runners. We had an early start, having to be in the starting corrals by 6:45am. We had some famous runners like Ryan Hall and Deana Kastor.

My goal time was to run it in under 2 hours. However, the humidity and heat was so significant that I wasn't able to make it. But I was just excited to do this race. When I crossed the finish line, I was delirious and not making much sense. A medic ended up giving me salt and lots of fluids. In the end I was fine but many people had the same reaction because of the heat. It was ironic that we have had such a cool summer and very rainy...but this was one of the hottest days of the summer. Even at 6 am heading to the starting line it was warm and muggy.
Me at the starting line. Behind me were the corrals.
After running through central park we came out on 7th ave and ran through time square. What an amazing feeling it was when I came out of central park and to run down this street with all the buildings and we had the road to ourselves. Normally this street is packed with cars.

First exam

2009-09-04T19:05:00.003-04:00

So I had my first exam for my new program. And I passed with flying colors...and not by the skin of my teeth as I got used to in my other nursing program. This was the first of 8 and it was way better than exams from my previous program. So far it seems to be a great program and I am looking forward to moving through it. My next exam is Sept 15th.

I schedule the exams myself online and then go to a Pierson Testing center a few miles from my house to take the exam. I don't have to go to classes since I already have done all the nursing classes. The hardest part is keeping motivated to study daily but I really want to finish ASAP so that seems to be keeping me going.

Life is good!

2009-08-15T00:02:00.003-04:00

Life has been good! I am learning a lot, getting connected and building a lot of solid friendships, back in school, and working. For the most part I have a complete and unexplainable peace about not finishing nursing school in my previous program. However, on days like today when they took their last final...there have been moments when I wish things could be different. I was so close...but I know God had His hand in it all. As the weeks have passed I can see so many things I would not have been able to be apart of because of nursing school. I have finally been able to really connect with people here and find my place here in NJ.

Today, I was speaking to one of the nursing recruiters at my hospital. She was saying that our hospital currently has a freeze on hiring new graduate nurses. This is not just happening at my hospital but many of the area hospitals. While, much of the country is facing a major shortage of nurses...NJ is not facing that currently due to so many hospitals closing down leaving experienced nurses to fill in the gaps. She told me that come January when there aren't many nursing students finishing school the picture will be much different. What a relief to hear that. The reality is that once I finish my nursing I have to give up my job as a tech. I am no longer legally able to work as a tech. So I can see just another way that things are working out for the better.

Tomorrow I am spending the day with my friend down at 6 flags Great Adventure and then Sunday I will be racing in the New York City 1/2 marathon (13.1 miles). This is a good chance for me to gauge where I am at for my marathon. I would love to do under 2 hours but my priority is to run with my friend and enjoy watching her celebrate her first ever 1/2 marathon. I find a lot of joy helping and seeing others run races like this and realize that they just accomplished a major goal.

Here is something that has spoken to my heart lately. It never ceases to amaze me that no matter how much I fail or how uncertain I can become...God's promises are faithful. Every morning no matter what happened yesterday...it is a new day and His promises are the same yesterday, today, and forever. Where else can we find such promises.

The LORD'S loving kindnesses indeed never cease,
For His compassion's never fail.
They are new every morning;
Great is Your faithfulness.
"The LORD is my portion," says my soul,
"Therefore I have hope in Him."
Lamentations 3:22-26

The LORD is good to those who wait for Him,
To the person who seeks Him.
It is good that he waits silently
For the salvation of the LORD.