?

Log in

No account? Create an account
asleep at mal 9/09
alumiere
invisible illness week - questions from rm 
9/14/09 21:57
asleep at mal 9/09
1. The illnesses I live with are:
hashimoto's thyroidism
chronic fatigue syndrome
fibromyalgia
auto-immune adrenal dysfunction
chronic systemic candidia infection
osteoarthritis
pcos

2. I was diagnosed with it in the year:
standard hypothyroidism - 2005
hashimoto's thyroid and cfs - 2007
automimmune adrenal system dysfunction - 2007
fibromyalgia - 2008
candidia - 2007
arthritis - 1995ish
pcos - 2002ish

3. But I had symptoms since:
hashimoto's - 2003
fibromyalgia - mid 1990s
cfs - 2003
autoimmune adrenal system dysfunction - ??
candidia - ??
arthritis - 1989ish
pcos - 1982ish

4. The biggest adjustment I've had to make is:
?? cause - "mind blanks" - memory issues both long and short term, which keep me from being able to do many of the things i used to do (like leave the house by myself)
hashimoto's - thyroid meds
fibromyalgia - take lots of meds, not physically capable of things i used to be able to do, numbness and constant pain
cfs - sleep too much, more meds
adrenal dysfunction - more meds, less stress
candidia - still more meds, extreme diet restrictions (less than 20g/day of total carbs)
arthritis - the pain
pcos - pain meds, no possibility of kids, endometrial ablation to control some of the symptoms, hormone therapy to control some of the symptoms

5. Most people assume:
i'm on a low carb diet; that the cane is an affectation because i don't use it all the time or because i have a pretty cane; that i'm difficult and/or a snob because i can't eat so many things; that i'm wasted on drugs or booze when i've just hit my limit (sleeping on a couch at the club happens all to often when i make it out) or am having a "mind blank"

6. The hardest part about mornings is:
mornings? i try to sleep through them whenever possible; if i'm up it's brief and because my body is misbehaving
start of day? taking T3 then waiting 1-2 hours to eat anything; twelve hours + /day of sleep is hard

7. My favorite medical TV show is:
probably ER (note: i have not had a TV since 2006 so i have not watched house)

8. A gadget I couldn't live without is:
the internet - since i don't leave the house by myself right now (which means i don't get out much) i'd go crazy were it not for online communication

9. The hardest part about nights is:
sleeping too much, needing to take enough pain meds to knock myself out so i can sleep (if i don't things are even worse)

10. Each day I take [?] pills & vitamins.
40+

11. Regarding alternative treatments, I:
am on multiple supplements to help control the autoimmune thyroid dysfunction and the candidia and bolster what's left of my immune system

12. If I had to choose between an invisible illness and a visible one, I would choose:
one problem, and a treatable one

13. Regarding working and career:
i no longer have a job (lost it 5/09), and with the mind blanks no-one knows if i'll find one again or not; i've also been unable to make any real progress on starting my own business as i can't predict bad days so i am not currently a reliable independent contractor

14. People would be surprised to know:
how much of my waking day goes to making sure i take meds at the right time and in the proper dose or just how much pain i'm in by the time they notice i'm obviously limping

15. The hardest thing to accept about my new reality is:
too many meds and diet restrictions

16. Something I never thought I could do with my illness was:
i don't think i've thought i couldn't do something, i just have to figure out a way to do it without hurting myself

17. The commercials about my illness
arthritis - suggest meds i can't take
i have not seen commercials about any of the other illnesses

18. Something I really miss doing since I was diagnosed:
having cocktails and dinner with friends without a second thought; too many foods to name

19. It was really hard to give up:
bread and fruit

20. A new hobby I've taken up since my diagnosis is:
i cook more (although that's not totally new); editorial work when my brain is functioning

21. If I could have one day of feeling normal again, I would:
want to spend the day wandering through a good museum, then splurge on an extravagant tasting menu type meal including breads and cocktail pairings, and then end the day with a great concert, drinks and dancing followed by really great sex and not have to worry about using all my spoons for next week

22. My illness has taught me:
that people suck all too often
the spoons theory and how to apply it
to try to track everything when you're making diet/life changes

23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
that fibromyalgia isn't a real illness, that i take too many pain meds

24. But I love it when people:
go out of their way to pick me up and take me with them to a club or concert or museum or...

25. My favorite motto, scripture, quote that gets me through tough times is:
life sucks, then you die

26. When someone is diagnosed I like to tell them:
if they've been diagnosed with hypothyroidism but aren't seeing an improvement i suggest getting a full range of thyroid tests (not just tsh) and if their tsh is good but T3 and anti-T3 are off then get off synthroid in favor of T3

27. Something that has surprised me about living with an illness is:
how much work it is

28. The nicest thing someone did for me when I wasn't feeling well was:
stay home and play set or backgammon with me rather than going out

29. I'm involved with Invisible Illness Week because:
it's become such a big part of my life

30. The fact that you read this list makes me feel:
sad that we haven't figured out a treatment plan that works for me yet; glad that i've got wonderful friends

also, as noted by rm these questions don't really deal with the underlying illnesses - if you have questions about any of them please ask - i'm still learning but i'll pass on what i can
Comments 
9/15/09 10:32 (UTC)
fibro sucks. There are a couple of medications that can be used for chronic pain, including fibro. A good rheumatoid arthritis specialist will know these meds but the side effects to taking any given med are often not worth the actual benefit.

Pain alone can cause all kinds of wonky things with memory in addition to being, well, distracting. Also, the comorbidity rate between chronic pain and depression is indisputable; i'd quote an article from the Am Medical Assoc's primary journal, JAMA, but i no longer have it. Hence, depression resulting from pain can also mess with the mind. Not only by the so-called "fibro fog", but by messing with short and long-term memory.

A chiropractor that I went to once recommended "core strengthening exercises" and he swore right-side-left by them. I'll have to admit that i've found them helpful, it's just not something most people can afford to learn.

I hope you find ways to sleep. Sleeping, of course, is integral.

Gentle hugs!
9/15/09 11:37 (UTC) - Invisible
I'm sorry you have this much to deal with.

I know you can't predict good days & bad days, so neither reliable work nor predictable self-employment is happening. That sucks. I hope this suggestion doesn't sound too Pollyanna-ish. Why don't you make some pieces at your own rate & sell them on eBay? (Of course I would think of money first, I'm such a materialist.) Even if it was $80.00 here, $100.00 there, just a smattering of sometimes money is better than none. & your work is lovely. I know it'd be a slow thing, but it's one of the few things you can truly do @ your own pace. :)

Have you applied for disability? & was Drew helpful @ all in helping you yell @ BC/BS?

It seems completely unfair that someone as awesome as you has to deal with all this. :( I hope that things carry through such that you can afford treatment, & I talked to my doc in passing today. She said although it seems lame, to try to do memory-retention games, such as Simon, games on Lumosity, the Memory card game, things that invovle thinking about stuff that jogs your memory, but isn't important (friends' names, bill stuff). She said your brain is a mysterious thing, but it can be forced/taught to tap deeper for memory connections if you work at it.

Of course, that's words coming from another coast..you've got all kindsa specialists. Hope yesterday went okay & that you are managing. *hogs und quiches*
9/15/09 11:39 (UTC)
Also: it might be time to repost your request for help again, soon. People should be reminded that yer out there, needing help. XOXOXO
9/15/09 15:41 (UTC) - Gentle hugs
I know a little about what you are dealing with and I know how frustrating it all is, especially the brain fog.
I so wish I could make it all better for you and I wish that life was not so unfair.

Maybe one day soon that magic pill will appear and fix all these problems.
Just keep hanging in there, I know you have a strong spirit and if anyone can beat and or live with all these illnesses, you can.
Gentle hugs
9/15/09 19:07 (UTC)
Next time I'm in L.A I'll come play backgammon with you! :-) *hugs*
9/15/09 19:49 (UTC)
I hear you, I always get "but you're so young!" because of the arthritis, the fibro I have heard that too "it's not "real""...come live a day in my body jerk! LOL

The pain I understand completely...there are days when it is amazing I can go out and function (I know you know where I am going with that) and though it is nowhere near what you deal with on a daily basis, I do understand and hope daily that they find SOMETHING to help!

With the arthritis, having the HLA-B27 gene has made them relucant to diagnose me with Ankylosing Spondylitis...but my back is getting worse and I see where it's heading!

I hope one day they figure out how to make you more fuctional again and if I hear anything I will let you know!

*very gentle hugs!*
9/20/09 16:54 (UTC)
I am so far behind reading LJ. I have only just seen your post and rm's and it is already the last day of the invisible illness week - not that it is "celebrated" or observed this side of the pond anyway. If I had known earlier I might have done a similar post anyway.

Thank you for sharing and explaining. *hugs*