Lupus Stole My Life

I'm out of bed. Thank God.  I didn't sleep much. I was tossing and turning and finally had to get up, this was about 2:30am.  I got on line and noticed a new icon on my FB page.  I had clicked on to see ads Tuesday and saw that it cost after I started putting the information in for this blog. I thought I canceled, I can't afford an ad. Well, I didn't cancel. Where do i think all those hits came from?  I'm so stupid, I created another fucking bill! There goes my holiday money, that I still didn't get! I'm canceled now, I am however happy that I have a nice little following from my boo boo though.  And that I didn't create a crazy bill. I have a Me Verse Lupus page  and I welcome everyone. Still figuring it out.

I went to lay down about 4 am and read the book I have on the Nook until 4:30am.  My mate had an appointment this morning and got dress, kissed me good-bye and left me in bed.  That means I have to make it.  It wasn't that bad, I didn't get that winded. I use to be huffing and puffing like crazy after making the bed.

Surprisingly I didn't have a headache this morning. and I feel pretty good. Eyes are just heavy, there's  a peace and serenity surrounding me.  As I sat in the library this morning, deep in thought, I couldn't remember if I made a donation to the library fund yesterday.  That is weird. I usually make donations regularly, daily.  Sometime they are very loose, and frequent and occasionally regular.  I can't remember about yesterday.  That brought to mind, how when I was a kid my grandmother use to ask us everyday, "did you cocky?" When we were in the bathroom she wanted us to call downstairs, "Gran I cocked."  I don't know why it was so important, as I got older the more it humiliated me.  If we didn't go we got a shot of prune juice. I won't drink that shit today.  I'll take a enema first. today I know why it's important.  I worked with this woman once who, did move her bowls. Her belly looked like she was pregnant and she was in pain.  When she went to the doctor he put her on a fiber diet and she lost the belly in a day or two.  She was litterly full of shit.

Since I was diagnoised with lupus that's the only thing that's real in my life. And going to doctors. It's sometimes hard for me to remeber the person I use to be.  I use to be spare of the moment, lets go.  Always ready for fun.  Today if you call and say lets' go.  I have to search inside myself to find out how I feel.  Do I want to go get in the shower.  Lotion, put on sunscreen, comb my hair, put on those damn compression socks that cost $26 a pair and squeeze my legs so tight.  Is my face too hairy, do I need to use some Nair to get rid of the fine hair that grows on my face. Am I using the bathroom a lot today.  If I am will I be able to hold it before I get to where I'm going.  Should I carry a Posie (a big sanitary napkin for urin.) Am I tired, how long will I be out, how far will I have to walk. Before I hop in the shower, change clothes, curl my hair with a hot iron, and lets go.

I want to know when I'm going out the day before.  First of all if I have to get there on my own then I need to call and make arragengments with Access-A-Ride. Then I spend the evening getting my clothes ready, going through my back pack.  Making sure I have everything I would need. Then I can't sleep because anxiety keeps picking at me.

I mentioned in a blog earlier that I use to be sharp. Smart, a decission maker. Today I can't decide if I should carry a jacket.  If I should call my kids, or my sister.  Do they want to talk to me?  As I say so often no one calls me except my son, who is needy.  Is the reason why they don't want to talk to me is because I'm so pittiful, whining about how fucked up my life is.  Or is the reason I hesitate about calling is I don't want to hear about their trails and tribulations, because I suck up their problems and let it stress me out, stressed because I can't help them. Stressed because I don't want to care and feel guilty that I don't.

I haven't had a drop dead gourgous figure since I was in my early 30's but I was never the size of  this baby hippo that I am today.  I have no disipline with my eating.  I get so hungry, I'm okay if I don't start eating.  But I have to eat because of my medication.  But once I start, I'm a glutton.  Salt and sugar that's what I want. It's not in my head, one of my Lupus friend doctor told her her hunger is in her head.  Well my head tells me my belly is empty after I eat a pound of beef, a pint of mash potatoes and drink a gallon of soda.  So I devour a half gallon of ice cream, even with that I use to be particular about the flavor, fuck flavor just give the me ice cream.

And this not sleeping. I use to go to sleep after sniffing cocaine all night.  I never had a problem sleeping.  I would get up on on Sunday, eat and go back to sleep, and sleep all day. (Well I did work 40 hours a week and spend all day Satuarday cleaning, washing clothes, cooking and then going out at night drinking and druggin.)   Now I'm afraid to sleep during the day because then I'll be up all night.  My mate can't sleep with the TV on so I can't watch TV when I wake up. So I read my Nook, problem with that is I can't see over the c-pap mask. By the time I get drowsy, close the Nook, put the machine on my face, I'm not tired anymore.  I'm out of benydryl, but like I said I really don't want to take them anymore.  I have enough problems with my memory.

That's the other thing, I can't remember what I said five minutes ago.  I watch a movie and I don't know what's going on.  I'm writing this blog and  I lose my train of thought. It's not a thin line, it's a hair line between sanity and madness. But I don't want the Cymbalta, being too happy is not me either.  I've been mello, I'm really not anymore either.  I'm a babbaling fool sometimes.  My mate is always telling me to be quiet.  So glad I can write my feelings here and someone listens, sometimes.  I don't even know if anyone reads all the way to the end of my blogs for real.  Cynical, yea I seem to be more and more some days.  Others opptumistic.

My life has dissappeared.  Even if I ever go into remission I will have my lung problems.  They aren't going away.  Even with that people say, take care of yourself so you can come off that oxygen. Don't they know once your lungs are damaged there's no coming back.  I guess they look at me being grossly obese they think if I lose weight I won't need the oxygen.  If you don't know what you're talking about then they should keep their mouth shut.  The only thing that might help is if I have the pulmonary hypertention.  There's medication to help with the breathing and there'a a  possible I will be able to come off of O2 for a while.  PH is not a cureable desease, and if I have it, I don't know how bad it is.  The life expetancy for PH is short, it's a progessive, diabiliting desease.  So there is no hope of me getting even a glimpse of the life I once had.  The theft burried my treasured life deep and in a secret secluded place.