alumiere (alumiere) wrote,

invisible illness week - questions from rm

1. The illnesses I live with are:
hashimoto's thyroidism
chronic fatigue syndrome
auto-immune adrenal dysfunction
chronic systemic candidia infection

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.

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
Tags: medical

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