[lenjan]

Yup, it's 1:30 a.m. I have somebody coming over to help me with something at 8:30 a.m. I have a mouth so dry that no amount of water is helping it, diarrhea because I dared to eat a vegetable, a headache, and a racing mind that won't slow down enough for me to sleep. So I hope you don't mind my venting here.

I have aplastic anemia. You can Google it if you want more information, but the gist of it is that your bone marrow shuts down and stops producing all 3 kinds of blood cells. I spent 5 weeks in the hospital with this crap and almost died because it was discovered so late in the game.

Now I have to go to the outpatient clinic once a week -- and that's assuming all my labwork is fine, if I need a blood or platelet transfusion, that's usually another trip.

I'm badly overweight, but my health aside from that has always been pretty good. My blood pressure and cholesterol are fine, I'm not diabetic, etc. If you Google aplastic anemia, you'll learn that it strikes one in two million people. That's ONE in TWO MILLION. One in a million would be bad enough! One in 100,000 would be bad enough! But *I* had to be the damn statistic.

I am now on Xanax 4x/day because I am so f'ing anxious about everything. Obviously, I'm unemployed now, so I have no income and no insurance. I've applied for state and federal financial aid, but I found out earlier this week that the ***** who was supposed to be processing the paperwork had let it sit on her desk for 3 weeks, so I have no idea when or if any of that stuff will kick in for me. I worry how I'm going to pay my bills and eat. I worry about bothering friends to drive me around, although I've started to drive a little myself now that I'm somewhat better. I worry from week to week what my lab tests will show. The doctors say to expect a 6-month recovery -- that's with the drug therapy I'm getting -- but I worry the crap will recur, because it's known to, and next time for a cure I need a bone marrow transplant. I worry about paying for my meds, one of which is $1100 for a box of 10 syringes, if I don't get state or federal help. Right now I can't even pay for the $10 generic. I worry when people come over, because, although it's great to see folks I haven't seen in a long time, I don't feel well enough to "entertain" and even if they only stay 45 minutes, I need a nap afterward and am all stressed out.

I'm tired of worrying. I'm tired of not being "normal." I miss my job, which, although it certainly varied from day to day, still had a sameness about it. I mean, I knew every other Tuesday night I would spend covering a city council meeting, regardless of what else was going on with my life. There was always a story to be working on. I hate uncertainty, and that's all I have now. I don't know, when I wake up every day, whether I'm going to feel well enough to get myself out and run short errands, or be so exhausted that I can't even manage to get out of bed long enough to take a shower.

I hate to whine and ask "why me," but that's exactly what I feel like doing. I know plenty of other people have it a lot worse, but I'm tired of a thousand meds and blood tests and all this medical %#@&#!, and I just want my life back. Am I asking too much?



Candy

[BlueFaith]

(((((((((Candy))))))))))
You sure have been through a lot, and you have the right to be angry and frustrated. I wish there was something I could do to help. Please know I am here for you whenever you need me. Take good, gentle care of yourself. I care about you!

Love, Jenn

[(JD)]

Yeah. I feel for you, candy. This is a truckload of the worst animal defecation one can find. I'm glad you vented, and hope it helped some.

I don't know that venting really helps us at all, though. It isn't in our best interest... wonder why it often temporarily feels good.

I'm not much help right now, sorry... but wanted to let you know that I read, and I care.

[Greenleaves]

((((((((((((Candybear))))))))))))))))

Sorry things are so rough for you right now. Feel free to vent all you want.

[PetulantWolf]

I dont know what your meds are but if you find out who makes the drug they often have programs and give out freebies....they usually call them "patient assistance programs"...sorry your going through all of this...

[lenjan]

I've applied to a few of those programs -- waiting to hear on a couple of them. They're harder to get into now than they used to be 7 or 8 years ago, the last time I needed "assistance." Now they want tax returns and stuff to prove your income, and a single person usually can't make over $17K. I made over that last year, so I'm S.O.L. if they look at my tax returns. I've just been writing at the bottom that I'm unemployed (which I am at the moment) and being supported by family and friends (also true), and that my state insurance has been applied for but hasn't come through yet (also true).

It's funny that a post should come to this thread just now because today I have just been really pissed off about this whole disease and everything connected to it. My hematologist's nurse called and said that when I come in for labs on Thursday -- which I didn't know I had to do -- they want me to come down to the clinic afterward and wait for the results, because my magnesium has been low and they want to see if I'll need a transfusion.

I couldn't care less if I need a magnesium tranfusion; I got them twice a day for weeks in the hospital, they don't take very long, and of all the things that could go wrong for me right now, low magnesium doesn't even rate on the meter. But taken as a whole, I'm g-d sick of transfusions and blood draws and of being exhausted for a day and a half after spending two hours in the outside world. I hate needing at least one nap a day, even if I never leave the apartment. I hate having to take 6 billion meds with 6 billion side effects. I hate the whole fricking thing, and I don't know why it had to be me. One in 2 million people gets this disease. Why did I have to be the fricking statistic?!?!

Argh. Sorry for the vent.

Candy

[wisewoman]

Candy, I would be po'd too. I am in the position of soon needing to find free drugs so I will let you know how that goes. I assume you had no disability insurance? Bummer. I know others may disagree but if you have a 401 k it might be time to take the 30% hit and use the cash to prepay bills as much as you can. The only other thought I had was there are groups that form to support people with specific diagnoses. Couldn't hurt to google. Good luck.

I understand.

[SS8282]

((((((((((Candy)))))))))) sorry you're going through so much - alone. Vent all you want. It certainly helps me. Just get it off your chest.

Is it possible for you to do some freelance? That way you are your own boss and get a bit of money too.

[lenjan]

SS, both of my last two jobs just hired new fulltime reporters, so freelance is probably out of the question. One definitely has nothing for me to do (former boss said so outright), and the more recent one said she'd let me when I felt better, but I'm not capable yet of sitting through 2-hour-plus meetings at night -- I can't even get through 2 hours sitting on my *** at the hospital without needing to sleep. Besides, the fulltime reporter there is responsible for 5-6 stories a week -- there isn't a lot left for a freelancer to do.

That brings up another issue, WTF I am doing for money next month. I can't keep hitting up my friends and family, and I have no income.

I don't even want to think about this right now. I want to go feel sorry for myself and pout and be pissy and immature and selfish. Everybody needs to host his or her own pity party now and then, dontcha think? ;-)

Candy