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