My unpredictable health.

I like to think I lead a pretty healthy lifestyle. The only thing not going for me is a disease I have that affects my legs. Honestly, its not a huge deal its just one of the struggles I deal with. Basically, I have nerve damage from my toes to my hips (or somewhere around there). How it happened you ask? Well I'll tell you. One night in December of 2007, my face, arms and legs suddenly started to go numb. I had been feeling like i was getting a cold during that day but it hadn't really amounted to much. The next day I went to an Insta-care clinic and they couldn't figure out what was wrong with me. At first they thought I was having a stroke, but they ruled that out. The doctors there said they they could do nothing for me and referred me to a neurologist. The only problem was that they couldn't get me into the neurologist for a couple of weeks. They sent me home and told me that if anything changed to go straight to the ER.

I went home, and later that night my legs went more numb. So my parents took me into the ER hoping to get some answers. After eight or nine hours of blood tests, and MRI's, I was sent home with no more knowledge then what I came in with. I was numb, scared and confused. The hospital had called a neurologist and made me an appointment for the day after Christmas.
To end the story, I went to the neurologist and he established that it COULD be a disease called Guillain-barre. Its an auto-immune disease where my body made anti-bodies to fight off a cold/infection and my antibodies ended up attacking my nerves cause nerve damage. The thing is, I have a lot of symptoms that fit with Guillain-barre but I also have many that don't. Guillian-barre is the only explanation any doctor has been able to find.
There is no treatment for what I have. There was a medication they put me on to help with the nerve pain but I had bad reactions to it so I am unable to take it. I have yet to find a pain medication that stops the pain. I do, however, get vitamin B12 shots. They help with repairing the nerve damage and will hopefully help my healing process to be a little bit quicker.

My legs are still numb for the most part. The only symptoms I really live with now are pain and numbness. It doesn't make sense to have numbness and pain together, but its true. I have loss of sensation in my legs. I can walk but rarely feel when I step on things, or run into things (which is sometimes a plus). The worst part of this whole thing is the pain. Its indescribable. I remember the only way I could think of describing the pain to doctors would be that "it feels like my legs are stuck in a meat grinder." Morbid I know. The pain is deep, sharp, annoying and frustrating. I live in constant pain, but then again I'm to the point where pain is normal. At times, I have bad days or bad weeks where the pain becomes worse. Today is one of those days. The pain can flare up at any moment for no apparent reason. I always tell people its like hiking. I'll get to a point where is seems like I'm climbing up away from my illness and its almost like I don't have one. Then, I suddenly fall back down and I remember I'm sick.

Back in high school when I got sick, i developed this fear that nobody would ever marry me because of this little illness. Silly I know, but it really was a thought that was always in the back of my mind. Lucky for me, I found the most patient,and loving person in this entire world who completely looked past my illness and loved and supported me through every moment. He's one of the few who can see through me when I try hide the fact that I'm miserable. I'm so grateful for Todd Miller, my new hubby, and for the unconditional love he has never ceased to give me.
I have great love and compassion for those with illnesses that they have to deal with daily. I have new family members who deal daily with things I can't even imagine. My niece Brooklyn is my ultimate hero. I love them all very much and I wish Brookie could understand how much of a hero she is to me, but she's only 3! She's a trooper!

Well, I must say I like having a blog to vent these things to. :) In the last 3 years I have improved drastically, but I still have a long way to go. Amazingly, I have someone by my side for the journey.

:)

1 comment:

  1. I am so sorry! My husband has a hip problem that no doctor can figure out!! He has had total reconstructive hip surgury and he still is in pain its crazy.

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