Invisible Illness Awareness Week
Sep. 14th, 2009 10:56 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
dezaSo it's time for those of us with invisible illnesses to stand up and talk about what we got through. I'll be annoying you with stuff about this all week, don't worry. ;) For those of you wondering, an invisible illness is a disease or condition that doesn't affect outward appearance to a noticeable degree. This includes such fun things as cancer, mental illness and scores of other conditions. Some estimates are that half the current population of the US have some form of invisible illness. So why don't we ever talk about them?
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
To kick off the week, have a meme!
1. The illness I live with is:
Avascular necrosis Psoriatic arthritis Estrogen Dominance Syndrome Adrenal Fatigue Sleep apnea Dysthymia Post-traumatic Stress Disorder
2. I was diagnosed with it in the year:
I was first diagnosed with Dysthymia in 1990. The PTSD diagnosis dates back to 1995. All of the other conditions were diagnosed in 2009.
3. But I had symptoms since:
My first major depressive episode was when I was 12, in 1983. That was also the year of my first suicide attempt.
I developed the PTSD after being raped in 1988. Yes, I still have issues from that.
The Ankylosing Spondylitis symptoms date bac to the early 90s. I always thought the aching back and sore feet were from dancing so much and wearing high heels. It honestly never occurred to me that the pain was abnormal.
Psoriatic Arthritis symptoms first started appearing in 1993, as a bizarre rash popping up around joints, resisting treatment for a while and then disappearing on its own months later.
Estrogen Dominance and Adrenal fatigue have been noticeable since 2004.
4. The biggest adjustment I’ve had to make is:
I can't do as much as I'd lie, because I simply don't have the energy for it. I don't like coming home after taking the kids to school for a 5-hour nap. If I don't get the nap, though, it's so much harder to keep up with the kids once they're home from school.
5. Most people assume:
That I'll get better someday. The sad truth is I have enough progressively degenerative problems with no cure that "better" is not part of the equation any more. With luck, I may find some treatments that let me fake feeling normal. When my conditions change, it will be to get worse. There is no way to make my fused bones separate to give me joints again. There is no reversal of the bone that has been eroded away. Even the measures used to halt further deterioration are temporary at best--the surgery last month has delayed the need for a total knee replacement, but it will still be needed in the future. There is no escaping it.
6. The hardest part about mornings are:
Getting out of bed. First off, I'm exhausted when I wake up. The aches that are always present turn to sharp, shooting pains when I start to move. There are times when trying to stand up leaves my sprawled on the floor when some body part or another just decides not to work.
7. My favorite medical TV show is:
House. Oh, Dr House, what I wouldn't give to be under your diagnostic care for a day! No doubt you'd figure out some bizarre underlying cause for all this crap that would be magically cured by an infusion, and I could get on with my life with never a relapse. While we're at it, there's a guy down the street who has the deed for the Brooklyn Bridge that he needs to sell...
8. A gadget I couldn’t live without is:
My car. I have specialist appointments in 4 different cities within about a 50 mile radius. I have anywhere from 1 to 4 appointments a week. There is no public service that could get me to all, or even most of them.
9. The hardest part about nights are:
Pain-based insomnia. laying awake all night, staring into the dark, crying from the pain and the tiredness and dammit I just want to sleep!
10. Each day I take 15 pills & vitamins.
I'm supposed to take an additional 10, but I can't afford them.
11. Regarding alternative treatments I:
Vitamins, even ones prescribed, are considered alternative medicine by most health coverages. did you know that? Just my prescribed vitamin supplements (not covered by insurance) come out to about $150/month. There's a reason I don't take over half of them--I just can't afford it.
12. If I had to choose between an invisible illness or visible I would choose:
There is no easy answer here. right now, if i'm having a good day I can fake being normal. There are people who see me who had no idea I had medical issues at all until I turned up in a wheelchair after my knee surgery. On the other hand, having a visible scar made it a lot easier to deal with the nasty people who invariably say I use the grocery store scooter because I'm too fat and lazy to bother walking on my own.
13. Regarding working and career:
I never understood how people could work a full day, come home, clean and take care of kids and then go out for an evening on the town. I've seen people like that on tv, but the thought of actually living like that was outside my realm of experience. At the end of my work day, all I ever wanted to do was nuke something for the kids to eat and crawl into bed. Now that I'm not working, I can put more time into the kids, something we've all needed.
14. People would be surprised to know:
I still hope to someday get a miracle treatment that fixes everything.
15. The hardest thing to accept about my new reality has been:
The inevitability of it all. Nothing I did caused this. Nothing I can do will stop it. It is outside my control.
16. Something I never thought I could do with my illness that I did was:
Walk again.
17. The commercials about my illness:
Give too much false hope. Humira and Enbrel may get me functional again, but they're not going to reverse the bone fusion.
18. Something I really miss doing since I was diagnosed is:
Dancing. I used to be able to bop around the house and shake my booty to some good music without screaming in pain.
19. It was really hard to have to give up:
So many dreams. horseback riding with my kids. Taking martial arts classes. Bellydancing at Pennsic. Starting my own business. Taing my kids to an amusement park or the beach without collapsing afterward. Knitting. Cross-stitch. Playing the violin.
20. A new hobby I have taken up since my diagnosis is:
Reading everything I can find to make sure I'm getting the best treatment possible.
21. If I could have one day of feeling normal again I would:
Be the mom my kids deserve.
22. My illness has taught me:
Patience. I'm constantly waiting on something--diagnosis, treatments, healing.
23. Want to know a secret? One thing people say that gets under my skin is:
"You're too young for this." Know what? Disabilities don't have an age limit! There is no guarantee that you'll live a certain number of years before the health problems kick in. Please don't denigrate my issues by telling me I'm too young to be experiencing them. Trust me, I'm not happy about any of it.
24. But I love it when people:
Ask me how they can help. I hate asking for anything, but if you've got an urge to come help me clean my house or keep me company while I'm organizing the pantry, please do!
25. My favorite motto, scripture, quote that gets me through tough times is:
You do what you've got to do. Right now, i'm largely a single mom. My pain doesn't matter nearly as much as taking care of my kids.
26. When someone is diagnosed I’d like to tell them:
Be your own advocate. No one else will ever be as willing to go to bat for your medical issues as you will.
27. Something that has surprised me about living with an illness is:
Just how much I can force myself to accomplish, even if I do pay for it later.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Vacuum my living room. Little things can make the biggest difference.
29. I’m involved with Invisible Illness Week because:
I'm tired of being constantly expected to not talking about it. I'm tired of being afraid of being perceived as whining, complaining or attention-whoring if I talk about the pain. I'm tired of living with the spectre of setting myself up as a target if I'm honest about how I feel.
30. The fact that you read this list makes me feel:
Impressed that you actually plowed through it instead of just skimming by! Thank you!
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
To kick off the week, have a meme!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is:
2. I was diagnosed with it in the year:
I was first diagnosed with Dysthymia in 1990. The PTSD diagnosis dates back to 1995. All of the other conditions were diagnosed in 2009.
3. But I had symptoms since:
My first major depressive episode was when I was 12, in 1983. That was also the year of my first suicide attempt.
I developed the PTSD after being raped in 1988. Yes, I still have issues from that.
The Ankylosing Spondylitis symptoms date bac to the early 90s. I always thought the aching back and sore feet were from dancing so much and wearing high heels. It honestly never occurred to me that the pain was abnormal.
Psoriatic Arthritis symptoms first started appearing in 1993, as a bizarre rash popping up around joints, resisting treatment for a while and then disappearing on its own months later.
Estrogen Dominance and Adrenal fatigue have been noticeable since 2004.
4. The biggest adjustment I’ve had to make is:
I can't do as much as I'd lie, because I simply don't have the energy for it. I don't like coming home after taking the kids to school for a 5-hour nap. If I don't get the nap, though, it's so much harder to keep up with the kids once they're home from school.
5. Most people assume:
That I'll get better someday. The sad truth is I have enough progressively degenerative problems with no cure that "better" is not part of the equation any more. With luck, I may find some treatments that let me fake feeling normal. When my conditions change, it will be to get worse. There is no way to make my fused bones separate to give me joints again. There is no reversal of the bone that has been eroded away. Even the measures used to halt further deterioration are temporary at best--the surgery last month has delayed the need for a total knee replacement, but it will still be needed in the future. There is no escaping it.
6. The hardest part about mornings are:
Getting out of bed. First off, I'm exhausted when I wake up. The aches that are always present turn to sharp, shooting pains when I start to move. There are times when trying to stand up leaves my sprawled on the floor when some body part or another just decides not to work.
7. My favorite medical TV show is:
House. Oh, Dr House, what I wouldn't give to be under your diagnostic care for a day! No doubt you'd figure out some bizarre underlying cause for all this crap that would be magically cured by an infusion, and I could get on with my life with never a relapse. While we're at it, there's a guy down the street who has the deed for the Brooklyn Bridge that he needs to sell...
8. A gadget I couldn’t live without is:
My car. I have specialist appointments in 4 different cities within about a 50 mile radius. I have anywhere from 1 to 4 appointments a week. There is no public service that could get me to all, or even most of them.
9. The hardest part about nights are:
Pain-based insomnia. laying awake all night, staring into the dark, crying from the pain and the tiredness and dammit I just want to sleep!
10. Each day I take 15 pills & vitamins.
I'm supposed to take an additional 10, but I can't afford them.
11. Regarding alternative treatments I:
Vitamins, even ones prescribed, are considered alternative medicine by most health coverages. did you know that? Just my prescribed vitamin supplements (not covered by insurance) come out to about $150/month. There's a reason I don't take over half of them--I just can't afford it.
12. If I had to choose between an invisible illness or visible I would choose:
There is no easy answer here. right now, if i'm having a good day I can fake being normal. There are people who see me who had no idea I had medical issues at all until I turned up in a wheelchair after my knee surgery. On the other hand, having a visible scar made it a lot easier to deal with the nasty people who invariably say I use the grocery store scooter because I'm too fat and lazy to bother walking on my own.
13. Regarding working and career:
I never understood how people could work a full day, come home, clean and take care of kids and then go out for an evening on the town. I've seen people like that on tv, but the thought of actually living like that was outside my realm of experience. At the end of my work day, all I ever wanted to do was nuke something for the kids to eat and crawl into bed. Now that I'm not working, I can put more time into the kids, something we've all needed.
14. People would be surprised to know:
I still hope to someday get a miracle treatment that fixes everything.
15. The hardest thing to accept about my new reality has been:
The inevitability of it all. Nothing I did caused this. Nothing I can do will stop it. It is outside my control.
16. Something I never thought I could do with my illness that I did was:
Walk again.
17. The commercials about my illness:
Give too much false hope. Humira and Enbrel may get me functional again, but they're not going to reverse the bone fusion.
18. Something I really miss doing since I was diagnosed is:
Dancing. I used to be able to bop around the house and shake my booty to some good music without screaming in pain.
19. It was really hard to have to give up:
So many dreams. horseback riding with my kids. Taking martial arts classes. Bellydancing at Pennsic. Starting my own business. Taing my kids to an amusement park or the beach without collapsing afterward. Knitting. Cross-stitch. Playing the violin.
20. A new hobby I have taken up since my diagnosis is:
Reading everything I can find to make sure I'm getting the best treatment possible.
21. If I could have one day of feeling normal again I would:
Be the mom my kids deserve.
22. My illness has taught me:
Patience. I'm constantly waiting on something--diagnosis, treatments, healing.
23. Want to know a secret? One thing people say that gets under my skin is:
"You're too young for this." Know what? Disabilities don't have an age limit! There is no guarantee that you'll live a certain number of years before the health problems kick in. Please don't denigrate my issues by telling me I'm too young to be experiencing them. Trust me, I'm not happy about any of it.
24. But I love it when people:
Ask me how they can help. I hate asking for anything, but if you've got an urge to come help me clean my house or keep me company while I'm organizing the pantry, please do!
25. My favorite motto, scripture, quote that gets me through tough times is:
You do what you've got to do. Right now, i'm largely a single mom. My pain doesn't matter nearly as much as taking care of my kids.
26. When someone is diagnosed I’d like to tell them:
Be your own advocate. No one else will ever be as willing to go to bat for your medical issues as you will.
27. Something that has surprised me about living with an illness is:
Just how much I can force myself to accomplish, even if I do pay for it later.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Vacuum my living room. Little things can make the biggest difference.
29. I’m involved with Invisible Illness Week because:
I'm tired of being constantly expected to not talking about it. I'm tired of being afraid of being perceived as whining, complaining or attention-whoring if I talk about the pain. I'm tired of living with the spectre of setting myself up as a target if I'm honest about how I feel.
30. The fact that you read this list makes me feel:
Impressed that you actually plowed through it instead of just skimming by! Thank you!
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
(no subject)
Date: 2009-09-14 04:58 pm (UTC)*hugs* If you ever make it out to CA, darling, or I make it out there, we MUST meet. if only to hang out and take a nap together ;)
(no subject)
Date: 2009-09-15 08:24 pm (UTC)Napping together sounds wonderful. ;) And with the Navy, you never know--we may be left coasters yet!
(no subject)
Date: 2009-09-14 05:11 pm (UTC)(no subject)
Date: 2009-09-14 05:21 pm (UTC)(no subject)
Date: 2009-09-14 05:39 pm (UTC)(no subject)
Date: 2009-09-14 05:39 pm (UTC)(no subject)
Date: 2009-09-14 06:43 pm (UTC)(no subject)
Date: 2009-09-14 06:50 pm (UTC)(no subject)
Date: 2009-09-14 06:55 pm (UTC)(no subject)
Date: 2009-09-14 07:06 pm (UTC)The problem is that the bones are fusing, right? So...then we just get rid of the bones! Replace with cartalidge, like in sharks.
WE CAN DO THIS! We can make you SharkLady!
*starts research*
*is eaten by a shark*
(no subject)
Date: 2009-09-14 07:31 pm (UTC)(no subject)
Date: 2009-09-14 08:38 pm (UTC)Ears and shoulders also available.
(no subject)
Date: 2009-09-14 09:18 pm (UTC)(no subject)
Date: 2009-09-14 09:21 pm (UTC){{very gentle hugs}} from Allie.
(no subject)
Date: 2009-09-14 11:02 pm (UTC)(no subject)
Date: 2009-09-15 01:05 am (UTC)My doc thinks I might have dysthymia also. It accessorizes so well with the panic disorder.
(no subject)
Date: 2009-09-15 10:54 am (UTC)(no subject)
Date: 2009-09-15 11:57 am (UTC)(no subject)
Date: 2009-09-15 08:05 pm (UTC)I remember wandering around in DC a bit with you that time we met for lunch at LoC. Hadn't realized things had accelerated so terribly for you.
(no subject)
Date: 2009-09-15 08:27 pm (UTC)(no subject)
Date: 2009-10-10 02:52 pm (UTC)(no subject)
Date: 2009-10-11 08:52 pm (UTC)Thank you for sharing your experiences and difficulties. I wish I could say something hopeful about future medical advances blah blah...but instead, I'll wish you any and all relief you can find.
(no subject)
Date: 2009-10-24 04:29 pm (UTC)this post gives me hope...not hope that I will be cured, but hope in people...that there are people who know how I feel.
Thank you.