Warrior

I wake up and you are there always lurking around the corner.
I never know when you will strike next.
You have taken so much from me.
Time from my children,
Hope of a future unburdened by pain.
I can never plan anything in advance.
Fear holds me hostage and pain leaves me alone.
No one truly understands the solitude that you have caused.
The stares the questioning looks when I use a cane or handicap spot on the really bad days,
The "You don't look sick" or "You're to young" or my personal favorite "Maybe if you lost a little weight"
The sadness in my children's eyes when I cannot do for them as they would ask.
I would never wish this on anyone.
Always questioning why I was chosen.
You very nearly took my life
I struggled to walk barely able to stand without you rearing your ugly head and knocking me back down with a vengeance.
You made me miss out on so much of my children's lives.
Made me take twice as long to graduate college. Required a brain surgery just to TRY and relieve symptoms that you have caused because there is NO CURE.
Made me have to realize how strong I truly am.
You may cause me daily pain but you also taught me what it means to be brave in the face of overwhelming odds and to fight and appreciate every single day that I am given.
You ruined my life and changed who I am forever.
Because of you I now know the true meaning of life.
I can never forgive you for what you have done to me but I have found peace in the knowledge that if I can help just one person like me then I will have won.
With all my love and anger,
A Chiari Warrior

Why

Why do I have to deal with doctors telling me that I'm to young to be feeling the way I do? I know how old I am ! Why do I have to hear from my own doctor a Veterans Administration doctor that if I lost weight I would feel better? Yes I know that I am overweight ! Yes I know I could loose a few! Did you think I didn't know this ? Did you think my self-esteem needed a gut shot! Are you trying to make my depression worse? I have tried working out and all that does is make me dizzy with a migraine and go blind for a few minutes! I have Chiari I cannot stop my self from feeling these things! That's why I came to you for help, medication so that I can feel some semblance of normal! Why can't you research my condition so you can know how to help me instead of judging me! I'm already depressed, frustrated, in pain, and angry! Thank you for making me realize that this fight will never end. How dare you judge me! Yes I was skinnier two years ago when you saw me last! I had just had brain surgery you twit. I wasn't eating I was puking my guts out because of pain meds and not to mention pregnant because another dr forgot to give me a pregnancy test before he cracked my skull open. I have just lost all faith in Drs. how dare you think that because your a Dr that you have the right to criticize me when I know more about my condition than you do ad I'm not a Dr.



Ok rant over

Conquer Chiari Walk Across America

Had a great time. Met lots of fellow Chiarians.

Meds

I must be getting immune to my meds I had a killer migraine start building at 3 pm yesterday so I took a relpax and naproxen didn't touch it so at 8 pm I took another relpax my propinalol, trazadone, phinergan, and another naproxen still nothing. By ten hubby had to take me to the ER. They gave regalan and Benadryl still nothing. Then they gave steroids and morphine finally relief. Now if only I could sleep. Time to make an appointment with my neurologist and switch meds.

So Tired

Not only could I not sleep last night but this morning I wake up and every joint in my body is on fire and I have a migraine to boot. I am out of meds so I will be calling my doctor as soon as they open today to see if he can get me in for a refill. It didn't help last night that my daughter is teething so she was cranky at the times I could fall asleep for a bit. I hope and pray that this goes away in time for me to spend some quality time with my kiddos I want to take them to the spalsh park sometime today. I just want to spend some quality time with them.

My Conquer Chiari Walk Fundraiser Page

https://www.conquerchiari.org/ccwaa12/TiffanyPerez Please Sponsor Me Help Raise funds for research

My favorite Informational Website

http://www.conquerchiari.org/index.html They have alot of information and I would like to invite you to the Conquer Chiari Walk in Dallas this Sept on the 22. the information is on this website as well. Registration is free and you can purchase a T-Shirt through here as well