I learned from
this post on definatalie.com this week is
National Invisible Illness Awareness Week in America. I'm inspired by Natalie's post to fill out my own questionnaire here. I invite you to fill out your own in your blog & link me in the comments.
1. The illness(es) I live with are:
Hashimoto's Thyroiditis (aka hypothyroidism), Polycystic Ovary Syndrome (aka PCOS), and Seasonal Affective Disorder (aka SAD) manifesting as depression.
2. I was diagnosed with it/them in the year:
thyroid: 1989 (age 11)
PCOS: 1998 (age 20)
depression: 1990 (age 12)
3. But I had symptoms since:
thyroid: age 9
PCOS: age 12
depression: age 8
4. The biggest adjustment I've had to make is:
I've been sick since I was a child, so I don't really know what it's like to NOT be. There's not really any adjustment to make, as this is normal to me.
5. Most people assume:
I don't know what people think, really. I'm very headstrong, willful, and impatient, so I tend to not listen to them. I'm afraid people think I'm a hypochondriac for always saying I'm sick, or that I'm weak for complaining about pain. I *do* know that when I'm depressed, whoever I'm with often assumes that I'm upset with them.
6. The hardest part about mornings is:
Lately, I've been battling some sort of anemia, so my energy levels have been lower than usual. If I don't remember to take my thyroid pills as SOON as I wake up, I'll feel like I'm swimming underwater or floating in a fog the whole rest of the day.
7. My favorite medical TV show is:
M*A*S*H
8. A gadget I couldn't live without is:
My lightbox for cloudy & overcast days.
9. The hardest part about nights is:
Sometimes I get really painful leg cramps from wonky thyroid hormones.
When I menstruate or have PMS, overnights are the WORST. Even though for over ten years I've been on birth control pills to diminish ovarian cysts that caused me seven-ten nights of heavy flow, I loose sleep because I'm still scared I might bleed through and make a huge mess on my bed.
If I'm having a bout of depression, I have trouble sleeping. Since I purchased a lightbox two years ago, my insomnia has all but disappeared. It was TERRIBLE when I was a kid. I lost almost all of my junior year of high school -- I seriously don't remember what happened.
10. Each day I take [?] pills & vitamins.
That there is only half of 'em. Not shown: three before-I-wake-fully 60mg of Armour thyroid hormone, after-lunch glucophage, and after-dinner glucophage, cranberry supplements, multi-vitamin, and birth control pill.
11. Regarding alternative treatments, I:
I've tried chiropractic & therapeutic massage treatments for my chronic pain, but I ended up feeling WORSE, not better. Supposedly, if I had stuck to them for months/years/whatever/forever, I'd be MIRACLE CURED OMG. I don't have the money or the time for that, sorry.
As pictured, I take several herbal supplements in addition to chemical pills. When I hear about something that could help (i.e. cranberry for UTIs), I try it. If it helps, it stays. If not, I toss the bottle and eat the cost. Sometimes I suffer from terrible side effects (iron pills, I'm looking at YOU), and that fucks my shit up for days...even weeks.
I hear TCM, such as acupuncture & nasty-tasting teas, could help, but once again, I can't afford the time or the cost. And I am one of the few who have access to EXCELLENT health care & insurance, fortunately. Ironic, isn't it?
12. If I had to choose between an invisible illness and a visible one, I would choose:
AS IF! anyone can choose their lot in life. What a foolish question.
13. Regarding working and career:
I get in trouble for calling out sick as often as I do. I am very lucky my boss let's me work extra days to make up time when I've used up my allocated sick days. However, that means I work more than many. Well, in this economy, I suppose I should be grateful to even HAVE a job.
14. People would be surprised to know:
Some days I feel fanFUCKENtastic! I can muster up the energy to walk or bike all over town, working out is a pleasure, and I'm a thousand smiles. And then SURPRISE! a week later, I'm crumpled up in the doorway, crying in pain.
15. The hardest thing to accept about my new reality is:
There's nothing NEW about my reality...but the hardest thing for me to accept is that sometimes, I am simply TOO SICK to attend a social function or fun event. I try to not take the flaky way out & call my friends to let them know what's up, but I'm afraid I appear like a selfish shut-in.
16. Something I never thought I could do with my illness was:
Shop for straight sized clothes. I've worn plus sizes since I was in middle school, so I just have to MAKE IT WORK. /tim gunn
17. The commercials about my illness:
*What* commercials would that be, exactly? Motherfuckers, WHERE IS MY FUNDRAISER?! I want a Thyroid Three-Day, a Polycystic Purple Ribbon, and a SAD Telethon.
18. Something I really miss doing since I was diagnosed:
Uh, recess? Once again, I was diagnosed as a kid, so there's really nothing I miss that's not related to childhood.
19. It was really hard to give up:
Believing that one day I'd be tall and thin. That was a hard fantasy to surrender. Let me tell you, I still succumb to that bad habit. It can be tough accepting myself for who I am.
20. A new hobby I've taken up since my diagnosis is:
See #18
21. If I could have one day of feeling normal again, I would:
I would ride my scooter to NYC, ride all over the five boroughs, and then ride home again that night. Sure, I'd be a bit tired, but as I am NOW, it's impossible.
22. My illness has taught me:
How to be a control freak. (same answer as Natalie!)
23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
"I have this relative/friend/coworker who has a thyroid disorder, and she's JUST FINE." WELL GOOD FOR THE BOTH OF YOU.
24. But I love it when people:
...are understanding and kind when I explain my limitations.
25. My favorite motto,
scripture, quote that gets me through tough times is:
"Everything is going to be okeh."
26. When someone is diagnosed I like to tell them:
"Everything is going to be okeh."
27. Something that has surprised me about living with an illness is:
I am jealous at how some people are so cavalier about their activities. Fucking eh, if *I* had a normal body instead of this fixer-upper, I'd be out and about every day! Instead, most folk sit around and watch television or post crap online.
28. The nicest thing someone did for me when I wasn't feeling well was:
My boyfriend takes such wonderful care of me when I'm sick. He's constantly doing the nicest things, from driving me all over town to multiple pharmacies when my meds are out of stock, to sitting with me to keep me company when I'm blue.
29. I'm involved with Invisible Illness Week because:
I was inspired by Natalie's post on
http://www.definatalie.com30. The fact that you read this list makes me feel:
Pleased that you are now better informed.
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