Sunday, January 2, 2011

You're too young to be that sick...

So many times people tell me, "you're too young to be that sick." Or so many patients with auto-immune disease get the... "well you don't look sick." What most people don't see is the constant battle that goes beneath the surface. The aches and pains that go with doing every day activities. Feeling great one minute, and not so great the next. It is definitely an emotional and physical roller coaster.

I will be honest, as of late one of the most frustrating things, although I know its in good intentions, is the fact that so many people know I'm feeling better, so right away they're like, "Ohh... you're cured!" Woohoo! Unfortunately, I will never be "cured." You can be put in a "remission" if you would like to call it that. But no, I will never be considered "healthy" again.

My "feeling better" is WAY below the normal person's way of feeling. Every day when I get up I still have to give myself the motivational talk to move my muscles, even as I type this my hands are sore and freezing up from the arthritis.

I've been researching around the Internet for "other people" with autoimmune diseases and they constant theme seems to be frustration with people when they say, "hey you don't look sick" or the response of, "well at least you're cured." Unfortunately for our small little community, it doesn't work that way.

I know realistically that I will most likely go back on prednisone at some point, I'm just praying for at least one year off. I know that my lung disease WILL progress again and most likely, even with the best possible medicine, it is still progressing as we speak.

My mom asked me a funny question the other day and it has me pondering it a lot. She wondered when did this all start. I can think back to college being tired all the time... did it start way back then??? Or just a few months before our wedding, when I started to have muscle pain. Who knows. It is fascinating to research autoimmune diseases, as its a new field study that is just know becoming more researched. I'm hoping in 10 years we'll know more answers about how you get them or quite frankly, anything. I read one article that states aspartame can cause autoimmune disease. I was an avid Diet Pepsi drinker, so who knows???

I wish I wasn't this young and sick, but in the end I find that because I'm so young my body can handle more and take more. I will have time to prepare and mold my life to see what it will be like the rest of the time. Chris and I have been having lots of talks about the future this past Christmas. We don't really know what the future holds for us, but we are on the same page in regards to all the "tough" issues. We're both "hoping" that in a year I'll be strong enough to go back to work... it'll most likely be a part-time job and something fun. The only reason is to give me something to do. We're both "hoping" we'll be able to start family, how we go about that we're not sure yet... too many questions!?!?! But I can honestly say that I'm relieved to be even thinking about them. There was a time I didn't know if I would be there next month, let alone a year or five years.

Okay, enough of my 2 am rambling. I should probably go to bed. But wanted to let everyone know that if you know someone with an autoimmune disease, its best to just ask how they're feeling that day!!! Stay warm!

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