Invisible Illness/Condition Week

[ellid]

Gacked from several people:



1. The condition I live with:

Right side acoustic neuroma, with accompanying tinnitus, hearing loss, and occasional vertigo.

2. I was diagnosed with it in the year:

2006

3. But I had symptoms since:

Probably the late 1990s or so. Friends first started noticing my hearing loss around then. My first attack of vertigo was in 2002.

4. The biggest adjustment I've had to make is:

Tilting my head so people can talk into my left ear in crowd situations.

5. Most people assume:

That I have an affectation, not a medical condition.

6. The hardest part about mornings is:

Sometimes I have vertigo first thing, but not really relevant.

7. My favorite medical TV show is:

I rarely watch TV. ER was too melodramatic and the plots on House are frequently unrealistic.

8. A gadget I couldn't live without is:

Not relevant yet, but I fully expect to be using closed captioning when I watch TV within a couple of years.

9. The hardest part about nights is:

Not really relevant.


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

Not for this. There is no treatment and no cure except surgery to remove the neuroma. Mine isn't bad enough to justify surgery, although I have to have an MRI each year to make sure it's stable.

11. Regarding alternative treatments, I:

There is no treatment beyond surgery, either straight tumor removal or radiation, and I'm too young for the latter under the current protocols.

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

If given the choice, I'd rather have a form of deafness that could be treated with a hearing aid. Right now I have to wait until the neuroma is stable for around five years before a reputable audiologist will give me one.

13. Regarding working and career:

I told my old boss about the neuroma when I was first diagnosed. My co-workers were very sympathetic and understanding, but management started targeting me for reprimands and threats of dismissal because the cost of surgery would have driven up their insurance rates. I have not told my current supervisor and do not plan to unless I do need surgery.

14. People would be surprised to know:

That there's anything wrong with me beyond partial deafness.

15. The hardest thing to accept about my new reality is:

The hissing in my ear. Drives me nuts.

16. Something I never thought I could do with my condition was:

Still sing in a group. It certainly determines where I stand during certain songs so I can keep my pitch, though.

17. The commercials about my condition

There are no commercials. AN is almost unknown to the general public.

18. Something I really miss doing since I was diagnosed:

Taking from me my perception of being generally healthy. Being confident that I could someday go freelance and get my own health insurance. Thank you, American health care system!

19. It was really hard to give up: See above.

Not relevant.

20. A new hobby I've taken up since my diagnosis is:

Not relevant to me, although I should resume tai chi lessons at some point.

21. If I could have one day of feeling normal again, I would:

Buy an iPod and fill it with good music, ditto a cell phone. Right now I’m not sure it's worth it since I'm trying very hard not to do anything that would threaten the hearing in my good ear.

22. My condition has taught me:

To be much more sensitive to hearing issues.

23. Want to know a secret? One thing people say (about my condition) that gets under my skin is:

Why don't you wear a hearing aid?

24. But I love it when people:

Speak more clearly or turn up the TV a bit louder.

25. My favorite motto, scripture, quote that gets me through tough times is:

I am so very lucky that my tumor is benign. I am in awe of people like kitlizzy.

26. When someone is diagnosed I like to tell them:

I'm more than willing to talk to other neuroma patients so they won't be afraid. Being told "you have a tumor in your skull" is terrifying.

27. Something that has surprised me about living with an condition is:

How hearing disabilities that aren't bad enough for ASL or a hearing aid are basically ignored by society and the law.

28. The nicest thing someone did for me when I wasn't feeling well was:

Not relevant.

29. I'm involved with Invisible Illness/Condition Week because:

I'm posting this as part of an ongoing effort to claim my condition and not be ashamed.

30. The fact that you read this list makes me feel:

Happy that I'm educating people about a rare medical condition.

Comments

[samantha-vimes.livejournal.com]

The new hobby thing is because a lot of people have invisible conditions that exclude them from prior activities, or make them less frequent; like Chronic Fatigue Syndrome keeps a person in bed a lot. The first person I knew who did beading for a hobby was my great-uncle Bill. He lost much of his vision in WWI (he lied about his age to enlist young), when mustard gas entered his trench, it was too noisy to shout a warning, so he left his own mask off and went down the line man by man to make sure everyone would protect themselves. By the time he put his own on, the gas had damaged his eyes.
So when he got cancer, he couldn't read. But with someone sorting the beads for him, he could do the work mostly by touch and feel happy to make something beautiful.
A bestseller writer a few years ago was a woman with Chronic Fatigue Syndrome, who took up writing because she could do it in bed. So that's why the new hobby question is on there.

[ellid.livejournal.com]

Oh, I understand that (and will edit my original post to reflect this). It's not relevant to me, though, since I can still participate in all my hobbies. If anything, I should find the time to take up tai chi again since it might help with the balance issues.

[samantha-vimes.livejournal.com]

::nod:: My mold allergies cause vertigo, so, yes, it helps when you've got your muscles trained to do the sensing for you.
The sense of balance has 3 components. The ear, which for you is going to be a very long-term issue; kinetic sense, which is feedback from your muscles; and visual. For example, a dizzy spell can be partially calmed by looking at a corner of the ceiling-- the three lines of wall coming together gives you a fixed referent that can override the sense of floating/moving/being pulled off balance.

[musikologie.livejournal.com]

This is a brilliant way to raise awareness. Filling it out now.

*hugs*

[varianor.livejournal.com]

Yes, concur. (Although I don't think my sleep apnea warrants a post. It's getting a lot of attention these days.)

[nazrynn.livejournal.com]

Skipping the meme, but posting a (long winded) summary shortly on my health filter. :)

[kitlizzy.livejournal.com]

*blushes*

Thank you for posting this. It would be good for me to fill this out for my seizures, myself.

[persevero.livejournal.com]

It's been rather fascinating following up the different answers to this - like reading Oliver Sacks. And it reminds me not to jump to conclusions, as I did when an apparently perfectly fit twenty-something filled out a form to join the Dial-A-Ride service where I used to work. I was perfectly friendly and polite, but somewhat sceptical, until she handed the form over and left me to process it. At which point I realised that she couldn't drive, or even get out at the right stop when using public transport, because she had severe narcolepsy.