Tuesday, January 31, 2012

If it`s not one thing it`s another...

Believe me when I say I would love to share good news, but unfortunately that is not always the reality. The 20 mg upped dosage of prednisone by Doctor Henderson made me itch like a dog with fleas within an hour of taking it last night. I was miserable all night. I had to take two benadryl to make the itching stop and it only helped some. I was to the point of  wanting to go to the ER to get an IV so everything in my system would be flushed out.

Today I went to preschool for most of the day. It was so good to be back and the kids know just what to say to make you smile and laugh even on your worst day. The itching just kept getting worse. I had to leave. I came home took benadryl again and was out within 15 minutes. Mom talked to Doctor Henderson's office and they said it would be very rare if I was allergic to prednisone, but to start at my primary care doctor.

So off to Salisbury Pediatrics we go. My results from the cortisol testing came back and they are still low. That is what the prednisone is suppose to be helping. So here we have two issues with prednisone. It turns out I REALLY AM ALLERGIC TO PREDNISONE! Yep, I'm rare what can I say. My whole life is one big rare case and I have finally come to terms with that. I knew all along that it was the prednisone, but was trying to give it a chance. I just felt like I knew my body, and that was the cause. I have been through enough to know when somethings wrong. I`m not new at having medical issues and I`m not four.

So I am now on medicine for itching, and a different cortisol (cortisol is the hormone that controls your energy and helps manage stress) medicine. Lets hope this time I don`t get any of the rare side affects.

I am not allowed to go back to preschool for a while because of my low immune system. Just when I thought things where going to get back to semi normal....

Please pray these next few weeks until the 28th of February pass very quick. I can feel my legs and back getting worse everyday and it is harder to walk as each day passes.

Much love and hoping everyone has a pain free Wednesday!

Monday, January 30, 2012

Just another Monday

This song 'Praise you in this Storm' has become my new favorite song! It fits my life perfect right now. I seem to find myself listening to it every time I'm struggling.

I am still having a reaction to something. We are still not sure what it is. I really wish we knew so, I could stay away from it or stop using it. Dr. Henderson upped the dosage of my prednisone to 20mg from 1mg. He says that it will help the itching. We shall see if it really does. I hope it does, but I'm not getting too hopeful. ;-)

Hope everyone had a great Monday and has a terrific Tuesday.

Thanks for all your prayers,

Sunday, January 29, 2012

What a weeked!

(Lily doing her full split...impressive)

Friday night I went and saw my sister Lily, cheer at her game. She was awesome, as always. Click on this link to watch them do their dance routine: http://youtu.be/o3-jgIdYZ4E. Lily is the one doing the straddle split. Lily and I got that special talent. haha!  I was so glad to get out. Its just what I needed. We then went out to dinner at Monterrey. That was fun and my first time eating out with the family since surgery. :)

Saturday I slept in. It was a lazy day. Later that night I got in the tub. I then got a headache very suddenly after feeling AMAZING all day long. Soon after the headache, I started to get very itchy and swollen. I had gotten an allergic reaction from something that was in the tub. I used nothing new, but Lily was in there before me and she used something I had never used before. I took some bedadryl and bleached the tub and got back in to get whatever was on me off! I put wet tea bags on my eyes which helped a lot. Thanks Sherri for the suggestion! The benadryl made me fall asleep fast and the itching finally stopped. That was the best nights sleep I had gotten in a long time!

(One of my new best friends)
Today I woke up and was feeling fine, just tire. I skipped church and slept in. I ate lunch with my family and then went and got in the tub so I could get dressed for the day. Well, once again I got another reaction from being in there, even after I cleaned it very thoroughly. This time Lily had not been in there before me. She was not even home. So I have NO clue what is causing it. I once again got a rash, was swollen, and this time it felt hard for me to breath. It was as if a 300 pound man was sitting on my chest. I took more benadryl  and  put more wet tea bags on my eyes and the itching stopped, but not the hard breathing.

(And another new best friend)
I have NO CLUE what is causing all of this. I have no new medicine and have had no dietary changes. It is so weird. It remains a mystery! I'm glad the benadryl is helping and I have not ended up in the ER. Please pray that we figure out what is causing this and that it does not get worse. Thanks!

I hope everyone is having a good weekend and has a great pain free week!

Thanks for reading my blog,

Friday, January 27, 2012

My best top 10 advice for fellow Chiarians!

1. Don`t give up hope.
2. Keep a journal every day. Write down everything you are experiencing.
3. Be honest about how you are feeling, don`t hold it in. It makes it so much harder to handle alone.
4. Don`t hold back the tears. I did for 3 years and am crying tons now. Cry when you need to. It is a lot to handle and NO one knows what you are going through unless they have Chiari too. Let it all out!
5. Join Chiari groups and talk to other fellow Chiarians. It helps a lot to know you are not alone.
6. Don`t over do it. Lay down and rest when you need to. Our bodies are not able to do much as others.
7. Find a doctor who believes you and realize up front that having the Chiari surgery does not cure you and you might have other issues and need other surgeries.
8. Get a second opinion or even a third.
9. Know that your symptoms are real and you are not crazy.
10. When you feel good, get out and do stuff, because tomorrow you may not be able too. (I regret not doing certain stuff so much)

I promise it will get better eventually. We will always ride the roller coaster of Chiari, but we will never be alone. Don't give up hope. Keep fighting and spreading awarness. Please do not hesitate to ask me anything you are unsure about. If  I don't know the answer I will help you find it. :)

Much love and best wishes,

Did you know...

1. Chiari is not cureable and is a chronic disease?
2. According to Dr. Fraser Henderosn Chiari is becoming a pandemic?
3. More people have Chiari Malformation than MS?
4. Most people go misdiagnosed or undiagnosed for years, due to doctors having little knowlegdge of Chiari?
5. Most patients suffer from atleast 5 symptoms?
6. 30% of children born with spina bifida are also born with Chiari Malformation?
7. Symptoms can come back, even years after the surgery?
8. Chiari is believed to be congenital?
9. Scoliosis and kyphosis are common among people who have Chiari?
10. People who have Chiari, commonly have EDS, Tethered Cord, Syringomyelia, cervical instability, POTS, Intercanial Hypertension, Spina-Bifida, and neurogenic bladder?

*For more information visit www.csfinfo.org*

Thursday, January 26, 2012

Think before you speak...

I have learned through my experiences of dealing with Chiari and unfamiliar people that don`t know about the disease or understand it, really just don`t know what to say. They think they are saying the right thing, but sometimes it can be really hurtful and they don`t realize it. So I found the picture above and it is perfect for people to think about before talking to someone with a Chiari or anyone for that matter. Don`t accuse us of faking, or lying. Only inspire us and be kind doing so. If we are having a bad day, only encourage us. We need all the inspiration and kindness we can get during our ride on the rollorcoaster of Chiari Malformation.

It is something to think about...What you say, may really hurt someones feelings, but honestly you don't mean to.



Stormy Day

Today was my first full day of  being home alone all day. I was having severe leg and back pain to the point that it hurt to walk or even touch. I did not get out of bed all day not even to go to the bathroom, but once. Thank you to everyone who offered to help and gave me their phone numbers in case I needed them.

We are STILL waiting on prior authorization on my pain medication that should help with my leg and back pain. Please pray it happens soon. Maybe if they lived one day in my life we would of had that pain medicine days ago.

The weather is suppose to be severe here tonight and tomorrow morning. I am praying that it does not affect me to bad or any other fellow Chiarian. It is no fun when there is a weather change. Please keep me in your prayers as it passes through, as well as everyone for their saftey. Thanks a bunch!

Also, If you are interested in following my blog, please put your email in where there is a place provided on my page and you will then be notified of any new posts or changes. :)

Much love!

Wednesday, January 25, 2012


These past few days have been so hard on me. I have cried more than I have cried about any of this in the past 3 years. Reality has set in that I will never be 'normal' and I will deal with this for the rest of my life. There is NO CURE! There is a long list of things I will never be able to do....like ride a rollar coaster, go sky diving (not that I would, but still). It hurts!!  Now being a senior I realize how much I have missed out on. I realized that if I would have felt better maybe I would have wanted to go to the friday night football games, winter formal, prom and be more involved, but I wanted to do what I had to do, nothing more and nothing less. Seeing my sister get to do everything I did not, really makes me sad. I am so HAPPY she gets to do it, but I wish I had felt like doing it too.  I realize I dont get a second chance and this should be the time I am having a blast, but instead I am in and out of doctors offices and hospitals. I realize it could be so much worse, but it is hard to compare situations because everyones situation is BAD TO THEM. Everything seems to be gettting to me latley. It is hard there is no doubt and I think I am finally getting at peace with this and realizing all of the things I STILL CAN DO!  I wish this on no one, not even my worst enemy and blame no one for me having it. It is what it is and I hope with my experience, I can help save someone from suffering as much as I did.

Thanks for the support!

Lots to Catch up on!

(Dr. Henderson and I)

Who would of known that going to a Chiari Walk in Winder, Georgia would have lead us to Maryland to a great, I mean awesome, amazing, caring neurosurgeon named Dr. Faser Henderson???? Well it did and I am 6 weeks out of surgery today.

We waited 3 months to see Dr. Henderson. He is one out of 6 neurosurgeons to know or even perform cranial instability surgery in the country. We saw him on December 2nd 2011 and had surgery December 14th, 2011. That is the day my life changed forever!!! He removed part of my rib and fused my C1 and C2 vertebre together to make it more stable. He also did further decompression. My brain stem was bent in half and it was a life or death situation that no other neurosurgeon knew about. Ehlers Danlos plays a huge role in this.

While waiting in pre-op I was hooked to millions of things and people where in and out asking me one million and one questions and before they came to take me for surgery Dr. Henderson came and prayed with me and my family. Now what doctor does that??? I then proceeded to fall asleep and be taken back for surgery, 4 hours later I was in recovery. I did not have any complications except for low blood pressure. I remained in the hospital for 4 days which is no bigger than Rowan Regional, but wonderful.

I just returned from my 6 week post op appt and everything went well and as planned. I do have and infection called pseudomonas, but he was not concerned. I will see him again in 6 weeks for more testing. I will have a urodynamic study, weight bearing MRI to check my hardware from surgery and a lumbar MRI to check my spine out about the tethered cord. I hope these 6 weeks fly by because I am experiencing severe leg and back pain to the point that it hurts to walk. He assured me that was normal due to the tethered cord.

On another note, please keep a friend in your prayers as she had the same surgery as I did today with Dr. Henderson, but has some complications. It is greatly appreciated!

Thanks so much for all the prayers and support.

Do`s and Dont`s

-Don`t assume that I am feeling well, because I look good. I almost always look good, but feel terrible.
-Don`t tell me you know how I feel UNLESS you have a Chiari too. Yes, I know lots of diseases cause pain but everyones pain differs with each illness or disease.
-Don`t tell me I can`t do something, because that just makes me want to do it more. If I choose to do it and hurt later, then thats my problem.
-Don`t feel bad that you can not take the pain away. I was given this because God knew I could handle it. :)
-Don`t ask me how I feel unless you want the truth and a long story to go with it.
-Don`t assume that because I did a certain activity today that I can do it tomorrow.
-Don`t be upset if it takes me longer or I say something wrong. Chiari makes you think slower and gets your words jumbled up.
-Do know that I have learned everything possible about this disease to help myself and to help other Chiarians.
-Do offer to help me.
-Do realize that if I am having a bad Chiari day that I am not upset with you, that I am frustrated with the disease.
-Do PRAY and offer me lots of encouragement.
-Do hug me gently.
-Do understand when I have to cancel plans with you at the last minute that I never know how I am going to feel when I make the plans.
-Do understand that if I say I need to lie down or take medicine, it probably means I must do it now.
-Do understand that Chiari is very difficult to live with.