Sunday, March 26, 2006

This is my life

Ok this will be a long one... You can fast forward to the bottom if you wish. I will forgive you.

So when I was a baby I used to get sick all the time. I would cry endlessly and barf almost daily.

They told my mom that I was a colicky baby and I would grow out of it and the barfing part (cause colicky baby's rarely barf ALL THE TIME) they told my mom it was because I was allergic to milk.

Thus my mother immediately stopped giving me milk. I would have a few "better" days but her mothers intuition told her there was something wrong and kept taking me back.

They kept sending me home with my mother with another excuse "She must be allergic to the cats, or the plants in your house, maybe its your perfume, does the house have any mold?

This went on for years, and when I say years it went on till I was about 4 and my mother took me to a specialist in child medicine. She explained all my symtoms to the doctor "She's fine one minute runny outside playing and then all of a sudden she have violent attacks of vomiting and hide in the bathroom with her baby blanket. I have often found her inside the coffee table (you know the old ones that parents used to hind liquor in?) Which I think is because she wants to be in the dark, she also tells me her head hurts all the time, sometimes a cold cloth will sooth her, she sleeps under her bed when she gets sick."

The doctors run tests. The tell my mother I must have a tumor.

They give me a spinal tap (one of many I will receive in the following years) they run there tests. They find nothing. They suggest to my mom I may be allergic to the sun. She kept me inside for a week then finally let me go, they were grasping and there was no way my mother (unless proven otherwise) she was not going to let me stop living.

They tell my mother the tumor must be hidden and it will present itself in due time, they give me a CT scan. (mri's had yet to be used this was early 80's) They find nothing and send us home.

My mother was asked to keep a food journal, she was told to write down everything I ate so that they could analyze it and maybe come up with a solution to what's making me so sick.

They found I was allergic to red meats, anytime I would eat them I would get really sick. I stopped eating red meat. (much to the amusement of my 2 older brothers because we were very much a meat and potatoes family)

Years went by I was in and out of the hospital about once a week sometimes for days on end. I was vomiting so violently that I started to throw up the lining of my stomach. They would keep me for observations. Then they would say they have no idea what's wrong and when I was feeling better send me home.

By the time I was 9 my mother and my family was at wits end I was sick all the time and even though I was a great student our family had no life, we could not plan anything in advance, because we never knew when I would get sick. And it was not just me who suffered when I got sick the whole family was thrown into turmoil, either rushing me to the ER, getting me some juice a cold clothe taping up the windows so no light would get in...

So finally they referred me to a neurologist to run more test. The neurologist told my mom I was epileptic and we should start medications. My mother being the women she is was not having it. She question the doctors and said there was no way I was epileptic cause I had never had a seizure. The doctor told her "the spells" I was having must be epilepsy cause there was no other way to explain it. Again my mother pushed forward and refused the doctors recommendations, she did her own research about epilepsy and I stopped seeing that doctor.

It was one late night for about the 1000 time in the emergency room with yet another doctor explaining what was going on and how long this has been happening that a doctor asked my mom "Do YOU get migraine headaches?
"Yes I do, I have gotten them since I was a teenager and my mother had them as well"
"have anyone ever mentioned this may be what she's having?"
"I have told the doctors this a million times and they say there is no way because she has gotten sick like this since she was a baby, when she learned to talk and she got sick she would always tell me her head hurts and she's sensitive to light, smells and sounds"
"Have you seen a neurologist?"
"Yes we saw one a few weeks ago and they said she was epileptic"

Anyways this doctor referred me to another neurologist that specializes in child hood diseases and illnesses.
I spent a lot of time in the hospital for more test after all these tests, it was in deed proven that I suffer from SEVERE migraine headaches.
I am a "Rare" case and my study is in a medical journal somewhere I tried to find it but I could not. My mom has a copy somewhere. I was actually a pilot for the drug that I use called Imitrex. I was a guinea pig so to speak. It was such a new drug that at 13 my mom, dad and a lawyer had to sign a release for me to try it because it was only for people 18 and older. It has saved my life.

I would highly recommend it to anyone who suffers from migraines.Imitrex Web site Of coarse its a really strong drug and I would recommend trying other things first because it hard on your body. Its the only thing in my life that has EVER given me relief and when I say I tried everything I TRIED EVERYTHING. So much so that my mother had a faith healer come to visit when I was sick, she had an African witch doctor cast a spell for me (I love my mom and she would have done anything to take the pain away from me). And because I was in the pilot they used to make me go to migraine support groups which was funny because at 13 I was always the youngest one there by about 20 years. No one could believe that I was a sufferer.

Anyone who has been close to me at any time in my life has one way or another been audience for a migraine and understands how bad it can get.
I give myself injections for my migraines and when I get sick I GET REALLY sick. And for those who think a migraine is just a headache, well I will not even try to explain it other than imagine the worst pain possible and vomit for 16 straight hours that does not even do it justice but those who know, know.

Ok So I can not have children until

a) I refrain from taking any medication for 3 months prior to conception (the medication causes birth defects).
b) I can not take any medication for the 9 months of pregnancy and then as long as I breast feed.
c) I have had 2 neurologist explain that the chances I could carry to term without meds are about 1/100 chance. They say because I get so violently sick it would take one night of a migraine and I could lose the baby.
d) I would have to be monitored constantly because of this.
e) I would end up spending the year in bed in a hospital

I know I could over come these odds but I do not think my heart could handle losing a child if I knew it was my fault (I could have prevented it)

And I will more than likely pass this on to my daughters (its rare in men) I can handle me dealing with this for the rest of my life but to sentence a child to go through what I went through when I was a kid. On average I spent 100 days a year in the hospital.

And now there is my back. The accident has torn nucleus pulpos (the easiest way to explain it is like a ligament) in 3 different spots in my spine and I also have a bulging disc at t-8 (herniated disc) and any added weight would be really hard. Also the 3 spine specialist I have seen explained if I were to get pregnant I would need to stay in bed and it would make my spine worse and it may have unrepairable damage.

Weeww that was long but there you have it.

I am not looking for sympathy cause I know there could be worse things. This is a piece of me that I rarely tell people unless they are close to me. This is my flaw, the thing I deal with in private and try to hide it from the ones who love me so they do not worry about me (I often try to lie to the husband and tell him I am not sick, he can see right through me and I love him for that)

This is my life.

** and when I read back through this I got all emotional and cried, not because I have suffered that's the easy part, I was thinking of everyone I know in my life (and when I say everyone its really everyone) who at one time or another has not held my head out of the toilet or rushed me to the ER because I am throwing up the lining of my stomach again. I remember a time when my little sister climbed into bed with me to play with my hair and told me "I don't want you to be sick anymore" or the many times my brothers would be extra nice to me because I was just getting home from the hospital.

I debated on posting this and I almost deleted it. Weird how I feel like it does not matter and should be kept a secret. I am not good at secrets about me. As I am sure you have***


Anne said...

Oh sweetie..that is so sad. And so scary for your family not be able to find out what was wrong. My mom used to get migraines..and they would be so bad that the only thing she could do was go get a shot and be out for days.

I think that it is good that you wrote this. Sometimes it is worth it just when you go back and read what you have written..sometimes your own thought can hit you hard.


doc slm said...

I'm so glad you shared your story. I think it really helps to put it down on "paper" so you can see that you have had a rough go of it, but you made it through and are a stronger person. Everything we experience in our lives whether good or bad shapes the person we are.

more *hugs*

coffeygirlb said...

Damn lady. You have truly overcome. You are i'm sure a stronger person because of it. I just hope that everything ends up so that you can have children(if you want them). I too was sick alot as a child. I had chronic strep-infections, leaving me with psoriasis, now. But that was nothing compared to your hell. There are so many inspirational women on this crazy thing we call the internet,between you and Anne, I feel proud to be called a blogger!!

Anonymous said...

Maddie it's always good to share yourself with people, I know personally that it takes courage.
And you never know someone may stumble across this blog and you may of helped them.

Good luck with the job today! Givem' that :)southern charm smile :)

T-girl said...

Hey- I am sorry you have gone through this as a fellow sufferer (not so bad though) I know how dibilitating a migraine can be, I am allergic to the meds though! :( I have a script of Imatrex but after my last episode with the meds I am scared to try, maybe I will now!!! Oh and just so you know, for 9 months I was migraine free, there are also some new meds you can use while pregnant they are not as good but they do cut the pain I am told. Just something to think about, for some reason many woman suffer NO headaches during pregnancy! :) Either way... you will make the right choice for you, and there is always adoption if you do not want to chance it! If you were to lose a child that would NOT be your fault either, I can understand why you would feel that way though!!! Hang tough girl you will be fine!

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