Friday, August 28, 2009

Invisible Illness Avalanche

Okay, I started reading this back and it sounds like a big ol' whine fest. I truly didn't mean it to be that, so I'm writing this disclaimer at the beginning: I do not want pity; I am trying to educate folks on invisible illness and how to treat people who have it. I'm not angling for attention or "oh poor you." I would love your prayers and encouragement, but I don't want anyone feeling sorry for me. God has me in this position for a reason. So please keep that in mind as you read.

The beauty of invisible illness. Chronic illness. Autoimmune Disease. Any or all of the above. It's like an avalanche. It picks up other health issues like an avalanche crashing down the side of a huge mountain picks up more snow. This is just MY example of how it worked:

It all started with chronic tonsilitis. I had tonsilitis 3 times in one summer when I was 14. Did the doctor take them out? No. Had tonsilitis several times a year thereafter, until I finally went to a doc (when I was 25) who looked at me, sent me to an ENT, who said, these things have to come out NOW. They were chronically infected. Meaning all the time. My antibodies were so ramped up that when the tonsils came out, all the antibodies had to go somewhere, and instead of just going away, they started attacking my own nerves and muscles. (Thus the auto in autoimmune disease).

So began the MG. (And phase one of the avalanche).

Then, after being hospitalized, and almost dying, I got trached to get off the vent and get rid of my staph pneumonia. (Gathering momentum).

After being in the hospital and on huge doses of steroids, as well as going home on a high maintenance dose of steroids, I became diabetic. (Anyone getting cold??)

Since autoimmune disease tend to run in streaks, I have also been blessed with fibromyalgia. Now, if you've never experienced what feels like a hot ice pick stabbing into a muscle when someone BARELY touches you, you are missing out on fibro pain. The beauty of it is, it lasts for about 5 minutes. It's FANTASTIC when your 3 year old uses you for a jungle gym. (I'm hearing a realllly loud rumbling sound and the earth is starting to shake!)

Because of the amount of time I have been on steroids, (9 years now) I have developed osteoporosis. At the ripe old age of 38! Whoo-hoo! I've also got some reactive arthritis due to going up and down on the prednisone (steroids). (What is that mountain of white sliding towards us??)

Finally, well for this post, I am having hip pain again, and would really appreciate your prayers on this. My neuro. told me if my hip pain didn't completely go away, they need to do an MRI, as the avascular necrosis of the hip (thank you steroids) can "hide" on an x-ray. Some of you may recall that I had hip x-rays not too long ago, and they looked good. But, like Dr. Teener says, it is possible the necrosis is hiding its lovely little self. So I'm a little nervous, and just praying it's arthritis from the rain or something. I guess I will e-mail him and see what he says, but as some of you may recall, and MRI under sedation started this whole journey, so I'm not terribly anxious to have another one.

My point of all this is: Sometimes people have a LOT more going on than you may think. Most people look at me and think, oh, she has a trach, she must have had throat cancer or something. Other than that, she cleans up pretty well. The truth of the matter is, I may have used up all my effort and energy to make myself presentable to go out in public and the wrong word could make me crumple up into the ugly cry. Ya never know.

Just remember that surface is exactly that: surface. There may be a riptide under that calm pool you're seeing. There may be hurting soul under that brash exterior. There may be someone in need of a word of encouragement. Even if you don't know what to say, just be there. Sometimes you don't need words, you just need to know that there ARE people out there who care what's happening to you. Please don't ignore us because you don't know what to say or do. Just tell us you don't know what to say or do, but then STAY. Don't run because you're uncomfortable. We're uncomfortable too, and sometimes just need someone to be there and listen.


Young Wife said...

I'm praying for you!

Single Mama NYC said...

Thank you so much for sharing yourself with us. More of us need to know that these "invisible illnesses" have very visible faces to the pain.