Tuesday, August 3, 2010


So I guess I haven't really updated this blog for real since I got my diagnosis from the specialist. I suppose it's because I don't really want to write it down. I don't want to say the specialist thinks my immunity is compromised. I know what diseases there are that are autoimmune and not many of them are simple. The majority are pretty bad.

As it turns out, I was so sick my friends in health (Doctors and Nurses, I know personally) didn't even want to tell me they thought I had HIV. I don't, thank goodness - but they honestly for awhile thought I did. That's a terrifying thought, especially considering my lifestyle. I don't sit there swapping needles or bodily fluids with people. At least I'm not contagious - so whatever it is, nobody else will get, and that's reassuring.

People are being hard on me and it's difficult. I've gone some people asking me if I'm lying about the whole damn thing. Of course, these are just people on the internet and not people visiting me asking where my weight went, or why I've suddenly and uncontrollably started shaking, or why I need a nap so early in the day. So, really, who cares if they think I'm lying? I suppose - I do. It's a stress I don't need, people being cruel and accusing me of lying as I stand between sheer joy I'm alive and utter sadness I don't know what's wrong with me.

Oh I did't actually say that, did I? They diagnosed the liver failure but, apparently, the continuously being sick is the real problem - not the liver. You know it's scary when liver failure is the lesser of the evils going on in my body. The specialist even seem unconcerned about my liver at the moment and was more concerned with my health this last year. I can't even begin to imagine what I have - but rest assured I've already imagined everything.

The bright side is I'm finally reading all those wonderful books I love. I also was super meticulous with the taxes because, well, what was I going to do sitting at home all day? So we got a very nice refund coming in, and that eases my stresses quite a bit. Plus my fiance got his raise and I got paid for a couple things I did in the past - so surprisingly, I'm still managing to 'pull my weight' (I don't think I am most of the time but the fiance tells me to slow down all the time) around here and make some money to help out.

I'm allowed to do simple easy stuff. Doctor said I was allowed to putter and do household chores and even leave the house for short periods of time (to say, like, get 4-5 things from the shops or get videos from the video store but not like a giant grocery trip or eating out). I've been planting a lot of seeds in my garden because that's fairly easy. Just sit there and poke holes in the dirt. The chickens even broke out of the backyard and scratched up all the dirt in the front yard for me to make it a little easier.

It's interesting, I can actually pinpoint the exact time I've used too much energy in one go - when I start shaking. I can start to control it a little or feel it come on and I know to slow down. When I slow down, the shakes stop. I have no idea what the shakes even mean. I'm eating, so it's not from hunger. I've started digesting again, so it's not that. My E/LFTs are still incredibly high, but not as high as they were. Perhaps that's causing the shakes? No idea.

I admit I jump back and forth in my emotions a lot these days. Super extremes too. Not like me. I have highs and lows but they're usually situational. These days I look around me and just burst into tears, wondering if it's all going to go away. Wondering and praying whatever I have is managable or curable or non-existent (Maybe they made a mistake! I cry.).

I am redoing my will, and I'm updating my living will, in case I end up in a coma. Scary thought. I'm also contemplating upping my life insurance, but I worry they will notice I saw a specialist before I upgraded and only a few weeks before I was diagnosed with an autoimmune disease. I don't want them cancelling on my fiance if he needs it because I felt the desire to raise my limit at a bad time. Does anyone know if the insurance will do this? I'm not diagnosed with anything yet - but I probably will be.

I just... I want to live, damnit. Not live, look my blood is still running in my veins but LIVE, get out there and live. Live life, have fun, enjoy what I've got... I also want to pretend I never got this diagnosis and ignore it completely and pretend I'm healthy and just never go back to the doctor. I was supposed to make an appointment on Friday for this week. I can't bring myself to do it. I have a few blood tests still waiting for me to hear the results to - and I can't do it.

I know there's a few of you shaking your heads at me for being so stupid as to not make that appointment to see those last results. Stupid girl, you think, if it was me, I'd be in that doctor's office this second. Would you? Really? Because I'm stuck in this limbo between "It's really bad not knowing" and "What I don't know can't hurt me"....if I bury my head in the sand long enough, the world will pass by and everything will be okay. What I don't know today could be the worst news I get in my life tomorrow, you know?

People get mad at me because when they see me, I am laughing and joking. Even about the doctor's results and diagnosis... I joke and laugh. How dare I! How dare I? What else am I supposed to do? Break down in tears every time I bring it up like I do when I'm alone? Am I supposed to be sad until I get my autoimmune diagnosis and then be sadder still? Sometimes I begin to wonder if people just want to see me cry.

So I laugh and I joke and I keep my spirits up because, well, because this sucks. I'm NOT happy. I'm NOT in the mood to laugh - but I'm going to do it anyway. Even the simple act of making the joke or pretending to laugh eases the stresses a little. It satisfies me that the world is normal and happy and the pain will, in fact, go away. Laughter, jokes and smiles give me the hope I need to see the light at the end of the tunnel.

If I can laugh, then I haven't lost me. I won't lose myself in this, I refuse to.

So, I'm on bedrest for another 10 or so days. I can handle that, right? In 10 days, I'll join the world again - like nothing bad ever happened. That will be nice.

No comments:

Post a Comment