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asleep at mal 9/09
alumiere
medicine cabinet 
8/1/09 5:46
asleep at mal 9/09
someone asked me yesterday about all the meds i take, and i thought a picture might make it a bit more comprehensible



the bottles on the bottom shelf and all but three on the upper shelf are all mine

the main rows on the lower shelf all get taken at least once a day, plus a few more that have to be refrigerated, and many things including the heparin, the first visible row from the right (there's another row on the right that you can't see), and the base pain meds are two times a day - so that's 27 different meds once a day, plus 10 more and heparin twice a day every day, and extra meds for migrains and bad pain days, etc

i wish the medical community could figure out a way to rebuild my system (stem cells?) instead of replacing the individual hormones, proteins, etc that my body doesn't make

and what i'd like even more is for the doctors to be able to figure out what is causing the memory/brain malfunctions and the numbness... i wouldn't complain about taking another half dozen pills/day if there was something to fix those issues...

i just want my life back

9:15 pm - ETA - and just now, t broke one of his front teeth off at the gumline - so now we need to come up with money to pay for that too
Comments 
8/1/09 15:59 (UTC)
I share your frustration. I was, well, not stunned, but disappointed to discover that the government is practically the only entity funding stem cell research.
I am currently looking for information on organizations that are trying to find cures for chronic diseases (something that pharmaceutical companies do not want to do because chronic diseases are really lucrative for pharmaceutical companies)-- there are not a lot but I should know soon.
If/when I find an organization that is funding stem cell research, I plan to organize a benefit for it. I can keep you posted if you like.
8/1/09 19:40 (UTC)
Geez Louise, the only thing that I haev seen that even compares to that is the regimen that full-blown AIDS patients take. Unreal.

That makes my puny pill regimen seem tiny, & you have a boatload of sympathy from me. What a drag, how much they take over your life.

Doing things that are good for you while all this is going on - plenty of sleep, healthy food, hot tub, cuddling - is key, & I hope in the midst of the meds & Dr.'s appointments, you don't lose sight of that.

8/1/09 23:28 (UTC)
i am constantly aware of and grateful for my good fortune to be healthy.

it amazes and saddens me that so many people i know have so many serious health problems, and i'm impressed that all of you can manage to carry on with the rest of your lives in spite of these great burdens.
8/2/09 4:44 (UTC)
Thank you for the kind words. I wish that I could do more for you, really. I am fortunate enough to live in a state that has a very good public option. I would not be able to afford the ADD meds, let alone this, if I were not.
My pill regimen is all ADD and anxiety; the MS therapy is just one injection per day, but corporations exist to make as much money as possible, and they own the patent, so they can charge whatever the market will bear. I think that that is why MS meds are so expensive.
I have been trying to take good care of myself, and doing okay generally, although I am not doing too well on the positive attitude front especially since hot tubs are verboten :(
8/2/09 1:09 (UTC) - :(
ugh and ugh!

8/2/09 16:50 (UTC)
Are you reposting your earlier link for donations? I didn't see it on MySpace, did you put it up there?

Dental woe too? Jeez, can you catch some good luck now please?

I'm gonna dig into those CD's over the next 2 weeks so I can get you guys some money for those.

Did you say you were on disability, or had applied for disability? 'cause anyone w/ that much stuff to manage shouldn't have to worry about dealing with work too.

*fervent good joss sendings*
8/2/09 17:14 (UTC)
ok - slew of questions there - myspace - i posted the link to my lj post (the lj post is public) as a blog and sent a bulletin, but posting it to myspace and spreading a myspace link wouldn't do any good because my myspace is friends only

i've also twittered the link to my livejournal and several people have retweeted that, but so far the reaction has been pretty disheartening - very few donations and not enough to even pay my cobra for august thus far (i'd rather a thousand people donate small amounts - the cost of a cocktail or their daily starbucks, but i don't have enough readers for that)

the link doesn't seem to be spreading, and i'm not sure how to make it spread either...

i'm applying for disability but it could be years if at all before i recieve it and there are a lot of hoops to jump through in the process; i am also applying for food stamps this week (that requires in person visits to their office and takes time too - but i should qualify since my income is currently $0)

we're both about ready to give up at the moment

8/2/09 17:30 (UTC)
one thing i did think about though is that most of this has gone up on the weekend; i'm going to try one more repost on monday morning and ask everyone to spread the link again
8/2/09 17:46 (UTC)
Well, in my limited experience, the way to make links sticky is indeed to post first thing on a Monday. When you explain the situation, start from scratch. There are folks who won't have heard of any of your issues. Links to Wikis & other things that help explain are good.

I'm thinking that people might feel that $5.00 is too little in the face of such adversity. You need to emphasize that no matter how small, something is better than nothing.

Also: even though you are trying to limit this to friends, have you thought about making a site for it? It can just be a page. But if you do a page that's concise & well-laid out, & explains why you need help, that's something that's easier to forward around than a locked f-list post on lj or ms..name the site something like healthcareforkim, register w/ a seriously cheep webhosting site like GoDaddy, & try to forward that around..

Maybe do it as a raffle? Like, each 5.00 or 10.00 donation will be entered into a raffle to get a corset or something else fabulous made by you?

I'm gonna give this more thought tomorrow. You have a lotta techier than us pals: anyone up for coding you up a quick page?

Are you on Facebook? Lots of our nearest & dearest are on there.

Sorry for all the questions, trying to help. You've been on my mind.
8/2/09 17:55 (UTC)
ok - first, that livejournal post is the public post; i'm not in any way trying to limit this to just friends - i want the link to spread to as many places as possible

the post and multiple other health posts are all publicly viewable - that's why i chose my lj as the place to make the post

i have a facebook that i don't use, also under alumiere, and no, i haven't posted this there as i have two? friends there atm - i don't like fb's tools for this sort of thing, and i'd flock my fb as i've done with myspace because of the spam and ads that are so rampant; lj doesn't seem to have that problem

as for a raffle for something - i'm not confident i can follow through with getting anything done in a timely manner right now so to me that seems like a bad idea

and another webpage? my techie friends don't do web design - lj is my webpage of choice
8/2/09 22:47 (UTC)
Well, *I* posted the original post to Facebook. Ya never know. Carol asked to repost it on there...

OK, sweets - hang in there. We'll try again tomorrow, w/ the reposting. Bear in mind a lot of folks are off @ War.