Wednesday, September 26, 2012

Do`s and Dont`s

I posted this on facebook a long time ago, but I am going to post it on here too. :)

PLEASE...
-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.

Tuesday, September 11, 2012

Catch Up!

Feeling great has kept me busy which has kept me from writing. ;)

Summer has come and gone. I had a rough start, but I am doing 100 times better since my shunt was put in four months ago. The shunt has been amazing. It has helped me so much and I am so glad to say that it has not given me one problem. If I had to do it all over again, I would. That really was the key to be feeling better. Okay, back to summer. I made it to the mountains 3 times and 1 of those times was alone with a friend for 4 days, Sunset Beach, Charleston, and at the end of the summer into the start of the school year for everyone I went to Florida for three weeks. I had so much fun everywhere, but Florida was amazing. I had independence and got to spend time with my family and best friend, Kelli. I was so sad to come home, but I had stuff here I needed to get done.

Now that I am home, I am doing what is 3 years over due.....driving! I have come so far in just the past four months. I am continuing to volunteer at preschool. It is off to a great start. We have such a sweet group of kids. I also, took the volunteer training at my moms school to help her out and will be starting that soon. Yesterday and today I babysat all day two of the most amazing kids that I meet through preschool two years ago. I had so much fun with them. They are all around great, loving and fun kids. So I am staying busy which helps a lot.

Overall, I believe that the shunt surgery really was the last piece of the puzzle for now of my healing. The fusion surgery saved my life, but the shunt gave me my life back. My memory is still very off. That is the only thing I would say that's not better. If anything, its worse. I would go through all 6 surgeries again if I had to. I have been giving advice and answering questions to fellow Chiarians and people with EDS. I am thankful I am able to do so. It is nice to give back. September is Chiari awareness month so wear your Team Emily shirts or your purple. Think of how much less time it would of taken to be diagnosed 3 years ago, if people where aware. ;)

 
Also, when I was in Florida, I got a message from Paris` mother. It said that she was in ICU with heart failure and she needed a miracle. It has almost been a year since she received that heart. I was just informed on Sunday that she is no longer in failure and just has to regain her strength. I am so happy she pulled through. She is a very strong 10 year old. <3 Please continue to pray for Paris.




Sunday, July 1, 2012

The First of July

Belive it or not July is here. I am excited for everything that is planned for this month and I am even more excited that there is no question whether I will be able to do it or not. ;)

This coming week is post-op week three. I am still having tubing pain and I have noticed a few headaches. They are not as bad and the pain medicine makes them go away, where as before it did not help them. I HATE to even type that. The thought of the headaches worries/scares me to no end. The incisions look a lot better than what I thought they would. They are very clean and not very big.

I have lots of energy and always want to do something. That is a huge difference I have noticed. I wanted to do stuff before, but was always tired. It took all I had to do one thing a day. Now, I can do so much and not pay for it in the days later.

Looking back I honestly did not see how bad off I was, because that was my normal. I mean yeah, I knew I had headaches and excruciating pain and I missed out on so much, but that was my every day life. I did not really know any different. Now when I go to say how I use to feel, I realize that I was really bad off. For years my life was one big, huge, gigantic uncertain mess.

Have a good week and a great 4th of July!

Thursday, June 21, 2012

Surgery was a Success....

Over a week ago on Tuesday, June 12th, I had a lumbar shunt put in. I was in the hospital two days and did very well. The only problem was a spinal fluid leak and low pressure headache. I kind of expected it. I layed flat for FIVE very long days and had more soda (for the caffeine) than I ever want to have again.

I am feeling great and have NO headache or brain fog. I do have three incisions. One on my stomach (its the biggest and most painful), one on my side and another on my back. The only complaint I have is that the tubing draining the fluid into my abdominal area is very painful. It comes and goes, but when it`s hurting it`s breathtaking and hard to move. Hopefully that will get better as time goes on.

It is the most amazing feeling to feel great. I am taking NO pain medicine for the first time in almost 4 years and want to get out of bed and do something. :) Don't every take feeling good for granted, you never know what God has planned...

I am ready to move on with my summer and start having fun.
Thank you for all the prayers and thoughts. They mean so much!

Graduation!

Football games, prom, driving and clubs, that all had to be missed as I was very busy trying to get well. I do feel like I missed out on a whole lot of things the past four years and it would of been different if I had not had to fight to get well. Although, I did not have the 'high school experience' I had the life experience that not everyone my age has had. That is the past now and I can`t go back. So looking to the future, I am excited to see what God has in store for me!

Graduation day was every thing I expected. A very bittersweet, but great day! I had nine family members from Florida and Georgia here and big party later in the afternoon after graduation. 

The past 13 years have FLOWN by and it is hard to believe that elementary, middle, and high school is over. I am looking forward to whats ahead.......











Sunday, June 3, 2012

Kidneys, a project, and a new blog suggestion!

I have been in so much pain today. NOT because of a headache or my EDS, but because kidney stones/pain. I already have two, but I either have another one or the other two grew. I am heading to the urology sick clinic in the morning. No time to be sick, since this is the beginning of graduation week and only 9 days until surgery.

My sister, Baylie did her final project for her English class about me and my health journey. She did such an AWESOME job. I was in tears. I uploaded the video to YouTube and will post the link below so everyone can view it. She has been so tough through all of this and has always been there for me, her and Lily both.

It is much easier to live this life everyday than to hear it or read it out loud. When you are living it you do what you have to do without thinking about it too much, but when you are reading or saying it it sounds so much worse. I guess that's why I don't really like attention or to have to tell someone about it everywhere I go. I just realize how bad off I really was or still am when I say it.

Also, my best friend Jade just made a blog called 'Creative Junkie'. She would love to have some new followers, so if you have a minute stop by and read it and leave her a comment. Thanks! :)
If you have a blog let me know the name of it in the comment section, so I can check it out.

This is the link to the project Baylie did on me.


Thursday, May 31, 2012

Let the Countdown Begin

This post is going to be short and sweet as not much has changed on my health front.
It is June 1st which means I have 9 days until graduation and 12 days until surgery. I am not nervous about the surgery. I have done it just a few times. ;)
I had physical therapy yesterday. My rotation of my neck is improving, which is really good. I will go one more time next week before surgery.
I had the opportunity to babysit this week three sweet kids. It was so much fun and good for me. I felt great the whole day. I definitely want to do it more often.

Also, I have some Team Emily shirts on hand that you can buy.
T-shirts are $15.00 and sweatshirts are $27.00.
Leave me a comment and a way I can reach you if you are interested. Thanks!
T-Shirts:
-2 Adult small
-1 youth small
-3 youth large
Sweatshirts:
-1 adult large

Saturday, May 26, 2012

Number 6

I will be having surgery #6 on June 12th. That is three days after graduation. Just the way I wanted it. Dr. Henderson will be putting a shunt in. They said I should only be in the hospital two days. That is all I really know. No one ever wants surgery, but I am so tired of having a headache almost every single day of my life, so I cant wait.  

On Thursday I went with the Preschool on their last day of school field trip to Dan Nicholas Park. It was lots of fun and good to see those sweet kids. That night was the dance recital. Baylie and Lily both did a wonderful job. I felt GREAT that whole day.

Friday I had physical therapy to work on my range of motion in my neck. I still have a LONG way to go. I am no where near where I need to be. That day I had a horrendous headache. I felt worse than I had in a long time. I always have the headache, but that put me in bed and no pain medicine was working. I am allergic to Oxycontin, but I was desperate so I decided to try it. I took it and two benadryl and within an hour I felt great. I cant remember the last time I have taken that strong of a medicine. I have found though that the early I wake up and take my medicine and am doing something the better I seem to feel. I have added another dose of Diamox. I am now taking four 250mg doses.

Today I felt fine and stained the deck as well as went to Mooresville and got some graduation party stuff.

I am looking so forward to Tuesday when I will be babysitting a sweet girl from preschool and her awesome brother that is in Kindergarten. I love them both to death and I think it will do me some good. I love to babysit and have not been asked to in forever because of everything going on. I feel comfortable doing it though and it is one of the things I truly miss. I am beyond excited! It gives me some normalcy that I have been missing. :)

I hope everyone has a PAIN FREE Memorial Day Weekend!



Sunday, May 20, 2012

A Normal Night




The whole prom experience was absolutely amazing!! I felt great the whole night. It was the first time in a long time that I had gotten dressed up and felt put together. Being sick, I kind of downgraded from looking nice to pajamas or t-shirts and jeans, but last night reminded me of how good it felt to be dressed up.
I went with two friends. We got our hair done, had pictures taken and we were off. There was no way I could of even danced if I wanted to because of the strobe lights, but it was still awesome to be able to be there and take in the experience.
Our theme was Hollywood. They gave two stars out. One was to our assistant principal whose son just passed away from cancer. When they started talking about the next one they were giving out I new immediately I was going to have to go on stage. I knew when he said "Seniors, you have a classmate who has been sick" that it was me. I am the only one in my class who has been. It took all I had to walk up there and hold it together. So I received a star with the senior class signatures on it. I really do have a great and supportive class.
We went bowling in our dresses and apparently everyone else had the same idea too. That was another thing I have not been able to do because I have not been able to lift.
We got home about 1:00. It was a great night all around. I really am so glad I went.


Doctor Henderson`s office should be calling tomorrow to schedule shunt surgery for the summer. I have also developed what I thought was a spinal fluid leak around my tethered cord incision on my lumbar area. It it swollen and sticks out and is a little purple. Dr. Henderson said it was probably not a leak. He thinks it is lymphatic fluid. So no worries there.









Tuesday, May 15, 2012

Quick Update

Not much to update on health wise. I'm feeling the same. I am continuously nauseous all day every day. And now my right arm is very weak and is hard to use.
This week is BuSy! I have prom, my sister Baylie`s Confirmation, and senior awards added with some small daily stuff. I'm hoping I can make it through all that. It does not seem like much for the average person, but believe me when I say it will wipe me out completely. Its hard to believe that there are only 17 days of high school left for me ever. Its very bittersweet, but I'm ready. It is a really good feeling to accomplish school with everything else I have dealt with.






Sunday, April 29, 2012

Just another update

Well it looks like I will have to have a shunt. The diamox is working in full force with all its lovely side affects. We are going to call tomorrow to let Dr. Henderson know and see if he will even do the surgery. I'm not sure I'm for it if he wont do it. I guess it will depend. I have lost every ounce of trust I have in Doctors except maybe three. I am hoping for the end of June so that I can enjoy summer some and have time to recover before I start college in August.
I am swollen beyond belief that I'm down to about one pair of shoes that fit comfortably. :-( I want to be back in my normal body that I had three years ago....
I also have a rib out of place on the left side and possibly one on the right. No orthopedic will see me within distance. They either all say they don't do ribs or they don't handle EDS patients. I have a feeling this will only be the beginning of that when trying to find doctors. I'm so complex. Anyway, I went to massage therapy to help relax the muscles around it to see if I could get it back in place, but I couldn't. We are going to try to make an appointment with Physical Therapy this week as well.
We went shopping today for prom shoes and a graduation dress. When I tried on the dress is when I think my right rib came out of place. Any little activity will do it. I barely made it through that whole process. I did get a horrible headache and what medicine I normally take did not work for the first time ever. I did manage to finish. I just hope I don't pay for it tomorrow. I kind of got use to being able to do what I want and having a good stamina the month that I felt wonderful. I almost forgot how tough it was! Trust me I did seem to remember quickly though.
I know that my memory is not as good as it was too and I'm tired all the time again. Its so hard to be like this again. It makes me sad as I know the rest of my family. I am back down to one small activity a day. After that activity, if I even do it, I just lay in bed. Not what I expected my senior year to be like or even my sophomore or junior year. Never take life for granted even the small things.
The end of the year is quickly approaching. Lots going on...... Prom, Graduation, graduation parties, sisters confirmation and party, both sisters dance recitals, and a rush to finish assignments. I hope I make it through all of it.
I am hoping to make it to preschool at least one day this week for some fun.
Thank you for all the prayers and support. It means so much. :)

Tuesday, April 24, 2012

Sick again?


The headache, nausea, and weakness have put me in bed for three days now. I was/am very sick. I have not felt this bad since my low pressure headache back in February. Well this time Dr. Henderson believes it is a high pressure headache. If you remember back when I had the tethered cord surgery, they did a lumbar puncture and my pressure was 41. The high end of normal pressure is 15 so I am very far from that. I was not having symptoms at the time. Unfortunately, the symptoms have come on me very rapidly. I was fine for weeks and was feeling better than ever. Although I am very grateful of those days, it does feel like such a tease. Dr. Henderson did start me back on Diamox for the pressure. This medicine is HORRID to take. It has horrible side affects that can sometimes seem worse than the original problem. If this medicine works and helps my symptoms, then we know it is definitely high pressure and I have to consider a shunt. :( I really don't even like talking about the dreaded "S" word. They are easily infected and may need lots of revisions. I have always know this was a possibility. I was originally diagnosed with this way back three years ago at Baptist Hospital, then at the Mayo Clinic they said I was misdiagnosed and did not have inter cranial hypertension. I am going to take the diamox and see what happens. This medicine works very quickly and I should now within a few days. Please pray that I will know what the right decision is to do about the shunt. Thank you!

On another note I am going to my Senior Prom. I figured that since I missed out on everything else my whole high school career that I better go and have fun at least one night. There are 32 days of school left. Filling out graduation announcements and invitations makes graduation seem so real. It has flown by, even not being there. Please also pray that I feel great for both of these days. They are both huge steps from where I started. :)




Sunday, April 15, 2012

Just an Update

Not much to update on. I have been feeling GREAT! Spring Break was last week. We went to Florida. It was the first vacation that I was  able to do everything....NO NAP and NO PAIN MEDICINE! It was a great feeling. Now I'm ready to GRADUATE and for SUMMER!!!!!! Only 8 more weeks left. :))
I leave for Maryland again on Tuesday. I have a urologist appointment to check out my kidney stones as well as a 6 week follow up with Dr. Henderson. I don't even feel like I had surgery. I have no pain at all from it. I am having an issue with my rib that he did the rib graph on from my fusion surgery. Hopefully its nothing and all will go well and no surprise hospital stays this time. :)
 The little white dot in my kidney is one of the stones.
...and here is a picture of the hardware from my fusion surgery. 


I will update again when I get back. Have a great week.  

Thursday, March 29, 2012

18 and feeling better than ever

Not much to update on. I turned 18 on Monday the 26th and I am 5 weeks out of surgery today. I am ready to graduate in less than 3 months. I WILL get to walk with my class. :-)
I am feeling better than ever in three years.
I still do have the kidney stones, but I will see the doctor next week to see what to do. They do hurt, but the pain is minimal compared to what I have been through.
I am started having rib pain about a week ago again in the same area where they did the rib graph. That pain completely went away a few weeks after my fusion surgery in December, but suddenly came back. It hurts! My primary doctor thinks its inflamed from allergy's and a sinus infection. I am on antibiotic and if it does not help, I will go back for the next option.
Thanks for the support.


Monday, March 12, 2012

Feeling GREAT!

First off THANK YOU to everyone who donated, helped or came to the spaghetti dinner. It was a HUGE success and it was great to see everyone! I posted some pictures from the day below.






I am two weeks out of surgery. This Thursday will make three. I am taking NO PAIN MEDICINE for the first time in three years. Yes, I do have a very high pain tolerance, but I can truly tell that I am pain free. I am feeling better than ever. The past three years have physically and emotionally drained me in so many different ways. I am finally back to my old self. I do know that Chiari and EDS are always going to be a part of me and sometimes will be more difficult than others. It is just who I am and I am going to have the make the best of it. I am not tired all the time and I can make it through the whole day without a nap. For once I actually feel like doing stuff with my family and friends. It is the best feeling in the world. I can not wait to graduate and get a fresh start. I finally feel like I am reaching the end of the tunnel and seeing a bright future.
Thank you for all your thoughts and prayers. They mean more to me than you will ever know.

Thursday, March 1, 2012

What a February

I am so glad to say that the month of February is OVER! It was not a good month at all for me. So with that being said, I have not been able to update because I have been so sick and in and out of the hospital and doctors offices. I am going to go back and try and piece it together the best I can.

February 14th was the two month marker from my last surgery. We left to go to Bethesda that day so we could see Dr. Henderson for my 6 week post op visit on Friday of that week as well as a Urology appt. that I had on Thursday.

I had my Urology appt. first. They did a urodynamics test to see if I have neurogenic bladder. It was a HORRIBLE and PAINFUL test. The test came back positive for neurogenic bladder. There was no denying it. There sat the paper on Dr. Murdock`s desk that said it. It was so bad....It was off the chart. I did not only find out that I had neurogenic bladder, but that I have MULTIPLE kidney stones in my right kidney. The doctor says both of these things are very normal for Ehlers Danlos people. He prescribed medicine for both. Now to Dr. Henderson on Friday.

We sat in the waiting room to see Dr. Henderson for forever as usual (he was 2 hours behind), but trust me it is so worth it! We are called back. I tell him I'm doing good, but a few things had been bothering me.....my hardware was protruding out, my back and I was starting to get random headaches behind my eyes.
Now in a perfect world he would have said "Lets fix the hardware....No big deal and Oh yeah, I can do tetherd cord surgery and you will be set for good." but, it so did not happen that way to say the least. He can not fix my hardware due to the fact that my bones have not fused completely and it would mess the graphed up, so the hardware still remains. He also was not sure I had tethered cord because it was not showing up on the MRI and X-Ray that I had. So he would not do surgery anytime soon, until he was positive that was the problem. I do appreciate that he is not just going to do surgery unnecessary, but when you are desperate and feel horrible its not what you want to hear. If I did have it, it was considered a colt which means its there, but not showing up. So since I was having pressure headaches behind my eyes he thought that I could have Inter cranial Hypertension. He said it can cause back problems too. So unwillingly I went back on the horrid drug of diamox. I was SO upset. I knew I had tethered cord, but I could not challenge him about it because it was not showing up on the scans. :( I was not a very happy person.

All of that weekend I stayed on my uncles couch complaining I did not feel good. I did not want to do anything. We set for home on that following Monday and I made it as far as Alexandria, Virgina from Chevy Chase, Maryland. I got this god awful headache and as much as I did not want to admit it was behind my eyes and it felt as if fire crackers were exploding in my head. I immediately started sobbing and vomiting. (That is not like me at all. I usually tough it out and don't complain, because if I did not all I do would complain.) We headed to the ER to meet Dr. Henderson.

The ER was a horrific experience and I refuse to ever go back. I swear everyone with a hang nail was in there. It was ridiculous. Not an empty seat in the room and I could barley sit up. After hours of waiting in the waiting room we finally got called back. I was losing it. I was given an IV which took 8 sticks to get and I mean digging around to get. I finally said you have to find someone else. I'm going to black out. My veins are completely trashed from everything throughout the years. Dr. Henderson came in and ordered tons of stuff (I'm not even quite sure what all because by that point I was on some strong medicine). He did admit me though. Again, I was not happy, but I was SO VERY VERY sick.
After being admitted and finally getting a room at 2:30am, neither mom and I were very happy people. By the second day of being there he finally thought I needed tethered cord surgery. I WAS THRILLED! Not that I wanted surgery, but I just knew that's what I had and I wanted to be better and out of there. So tethered cord surgery got scheduled for Thursday. I was going crazy. I wont deny it though, Mom and I did get some good laughs while being in there.

That next day leading up to surgery seemed to last forever. Every thought of 'what if' came to mind. It was finally surgery day. It was scheduled to start at 3:30....yeah right! ha Anyway, I got prepared and cried and then cried some more. Mom was the only one able to be at this surgery. Everyone said it was going to be the easiest surgery you will have ever had.....NOT! I was preped and finally got down to surgery holding and the IV gage was not big enough. I was freaking. I knew they were not going to be able to get another one in me, So they ordered a PICC line. Then I was freaked about that, but looking back the  best decision I ever made and will never not have one again. Surgery started at 5:30. Mom sat in the waiting room alone. Our dear friend Jean White showed up to sit with her. It was suppose to take two hours and it did but I was in recovery a while. I remember being in the operating room and in the recovery room and carrying on conversations with the nurses and doctors. Dr. Henderson went to confirm the surgery went well with my mother. He said the normal filem around your spinal column is .2, well my was 6! I go big or go home, that's all there is to it. My incision is only about 2 inches, but very deep. He also at that time told her my angle when he did fusion was the worst he had ever seen at 99 degrees. A normal angle is 150 degrees. Its a wonder I survived. PRAYER that's all I can say about that!  While in surgery he also did a lumbar puncture to check my pressure.....its a part of the surgery. My pressure was dangerously high. It was 41 and the high end of a normal pressure is 15. Again, I go big! He removed spinal fluid to make the pressure normal. I was in very little pain and had to lay completely flat for 3 days. That is harder than it seems. I was basically spoon feed. I was discharged on Monday even though I had a headache. Dr. Henderson said drink some coffee you will be fine. I did just that and I was okay.

We left and headed for my uncles house in Chevy Chase about 30 min. away. Not even 5 minutes of being in the car I got that god awful headache again that put me in the hospital the first time, but 10 times worse. I was trying so hard to hold it in. I was NOT going to that ER. I was denying it, but I could not take it any longer. We showed up at Jeans house begging her to take us in. I could not of made it to Chevy Chase.

I literally layed flat on her couch in excruciating pain crying, screaming, vomiting, and holding my head. It took everything I had to get to the bathroom and once I was there I had to lay on the floor before I could leave. BLESS! Mom called Dr. H and said I refused to go back to the ER and what did he want me to do. Again, he said drink some coffee and lots of fluids and stay flat. He said its probably a low pressure headache because he reduced my pressure and then I took spinal fluid reducing medicine, so I did not have enough spinal fluid and it could last anywhere from two days to a week. I did not know what I was going to do. I so thought I was dying. Out of everything I have been though that was the worst by far. By day 3 I was better! Thank gosh, I literally thought I could have died at any second and did not know what was going to happen.

We stayed at Jeans through Wednesday and left Thursday Morning. I had a follow up with Dr. H Wednesday and believe me I was FIRED UP! That is not like me at all, but I knew I could NEVER handle that pain again, plus I did not want to have a lumbar puncture or take diamox in the first place. I was really challenging him and he was probably wishing I would shut up. I was throwing questions at him left and right and was telling him what I was and wasn't ever doing again. He just sat there and listened and took it all in. He even had his arm around me while I was ranting! I felt bad once we left and told mom I needed to text him and apologize, but she assured me by the look on his face he was trying not to laugh. I was so out of character. In saying all of that. I really do trust Dr. H and it was just a little mistake that was missed. I'm not mad at him. I was frustrated, yes, but I still love him and trust his opinion.

We made it home Thursday evening after 17 days of living a nightmare and ate dinner out as a family. So happy to be home and cant wait to see all my friends. I appreciate all the support. This was not a great experience, but I did make some amazing Chiari friends out of all this while I was up there. No one knows what it is like until they have lived it and it was nice to have people around who have. I know this was such a long post, but February was a long bad month that I don't want to meet up with again like that, but I would not have changed it......maybe just a few things!  ;)
March has already started off amazing! Next weekend is my spaghetti dinner fundraiser and a bunch of family comes in and then I will be 18 in just 24 short days!

Wednesday, February 1, 2012

Long Night

Last night was very long, to say the least. My back (lumbar area) and hip were KILLING ME! It felt as if I was being stabbed with a knife and there was so much pressure. I could not get comfortable to save my life. Two lortab did nothing for me. I was up until all the alarm clocks in the house were going off this morning. It is due to my tethered cord.

Today was much better. I slept most of the day, due to the fact that I got NO sleep last night. My new medicine for my cortisol level seems to be working. I have only had two doses and will take the third tonight.

I hope the rain does not kill me tonight. Please pray that it does not kill my head or any other chiarians head. The barametric pressure really bothers most of us with Chiari. Thank you!

Have a great night!

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,
Em

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,
Emily

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,
Emily

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.

THINK OF HOW IT WOULD MAKE YOU FEEL BEFORE YOU SPEAK!!!

 :-)

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

Reality


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.
Love!






Do`s and Dont`s

PLEASE...
-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.