I've thought about doing so a lot lately, but I haven't been feeling well. I've had headaches every day for months. But recently it's been horrible, like the past 3 weeks. I can't even open my eyes all the way. I'm trying to get an earlier follow up with my dr. My appointment now is for March 24th!
I did however FINALLY recieve my blood work prescription today that I was suppose to get a month ago. So I will be doing that this week. I'll also be finishing up disability and getting that going. I've been waiting on my w2 and I should get that Tuesday. I'll be happy to have all that sent in. I really hope that it goes through and quickly. I really need some income and working right now scares me. Specially with these headaches. I can't even concentrate with it. I'll see what happens. I have plans and back up plans. But of course the easy way would be the best way for all this to work out. Specially after a year of difficulty.
I've also noticed I've been getting an ache, I guess, not really a pain, feeling where my liver is and when it happens I feel as if it's swollen. I can rub my hand over the area and feel it slightly raised. Don't think it means much. It's just interesting.
I've be thinking a lot lately about everything. How I feel. How sick I really am. Some days I feel ok. And others I feel horrible. Haven't had a great day in a long time. Probably since before my knee went out over a year ago. I really see how I've declined. I know it could be way worse. But it does worry me. How will I be in 10 years? 20? Even a year from now. So much can change and happen. I don't think I will really improve much. There's not much I can do besides what I'm doing, medication and all that. But will I remain the same for a long time? Get worse? I don't know. It does make me anxious and a little sad sometimes. I'm still really hopeful for my future. I guess I thought of all this because the other day someone said 'your doing ok and your out of any danger now' or something similar to that... Hard to remember sometimes :/
And it got me thinking, just because I'm not laying in a hospital or having tons of tests doesn't mean anything. I'm not ok and I really won't ever be. I'm extremely sick and just because I don't look it or sound it or whatever doesn't mean 'oh I'm good now!' And I'm not trying to make myself sound worse or make people feel bad for me. It's not that at all. It's just the realization I have finally come to that I am sick. I am not healthy. I never will be. I won't get better. My liver is shot. My spleen is a mess. My spine is a nightmare. And that's that. I'm on meds to hopefully slow or stall progression but it's not a miracle. Trust me I wish it was. And I'm ok with all of this. It's funny when it all started, I use to get so scared of getting cirrhosis. Then once I started getting sick this year with each new thing I would get scared. But some how each time I would just get past it and be ok with it. Thinking about it years ago I didn't know how I would handle it. I still don't know how I'm so ok with it. One day it just stopped being so scary. I almost felt a calm come over me and I knew the situation and I was ok. Yes I still have moments or days where I get sad. But I tell myself it's ok and then I feel better. I even look at my wrist now and see 'fearless' and I immediately feel like I can get through it all. I love that. That was exactly what I wanted from it.
Well this turned into total rambling. I guess that's good :)
Oh! One thing I don't think I'll get use to - now that I have to tell people ( drs mostly) that I have cirrhosis. It would really be nice if they didn't get a look of horror and assume I'm an alcoholic or drug addict before letting me finish my explanation. I hate seeing the look on there face and having to say.. No, it's autoimmune. I need to get use to o saying autoimmune first. But really I should be able to say it how ever I want to without assumptions. But I understand ... Still annoying though :/
Ok. That's all for now. Off to bed !
