Blizzard of 2010!!!!!

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????

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

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

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

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

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

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

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!

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

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

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!

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!

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

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

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....

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

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

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

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

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

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

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.