![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
stormeriderSo, I've been meaning to post this for a while, but finally found the spoons to do so today. It's health related, but I'm going to leave this unfiltered because it's got a lot of good/important info in it, if you're up to reading it.
1. The illnesses I live with are:
* Glaucoma (in remission)
* Hiatal hernia
* GERD (acid reflux)
* Fibromyalgia
* Severe rheumatoid arthritis
* JHMS (joint hypermobility syndrome), which is being reclassified as a subtype of EDS (Ehler-Dahnlo's Syndrome)
* Chronic tendinitis
* Joint subluxation (notably in my jaw and shoulders, though all my joints are loose)
* TMJD (probably due to my jaw subluxing, the muscles have to work to hard and end up cramping)
* Chronic muscle tension
* Migraines (known trigger: perfume/cologne) and tension headaches (see: TMJD)
* Depression
* Anxiety (known triggers: police, phones)
2. I was diagnosed with it in the year:
I'm not sure "it" is the right term, heh. I got together withelialshadowpine in early 2005, and it took her about a year to get me to go see a doctor, so... most of these were diagnosed in 2006. Originally I was diagnosed with osteoarthritis due to the JHMS, but once I moved out here to Washington and broke down and saw a new rheumy (I had been waiting to get hired to get insurance to see the dr, but I couldn't wait any longer) he re-diagnosed me with rheumatoid arthritis.
RA being an autoimmune disorder instead of just a "wear and tear" disorder, we've been trying to stop the progression. So far without success.
3. But I had symptoms since:
All my life. A lot of them were minor things that weren't a problem, but looking back, I can see the progression. In 2004 I had two car accidents. My health started rapidly deteriorating after that. A common element of fibromyalgia is that people are predisposed to it (genetics, etc.) but then a traumatic event often triggers the progression of symptoms. That is definitely the case in my situation.
4. The biggest adjustment I’ve had to make is:
I think this is actually two things, equally important.
One is that I never not hurt. It's not a question of if I hurt, it's a question of how much. I never, ever, ever get below a 5 on the pain scale... and I'm usually floating between a 7 and a 9.
The other is that I can't help other people like I'm used to doing. I'm used to helping everyone else, I'm not used to being the one needing help. It's been hard for me to set limits and ask for help. I'm doing better this year with that than in previous ones, but it's still difficult for me sometimes, and it's very difficult to see someone likeelialshadowpine or paul_zap need help and not be able to provide it.
5. Most people assume:
That I'm dealing well with the illness. I put on a good front for the people at work... I don't sugar-coat things but I tend to avoid letting my pain show or letting my frustration come out. They see a small slice of what I deal with, and think that I'm so upbeat and positive about things. Fuck, I wish that were true. They don't know how many times a week I spend crying in pain...
6. The hardest part about mornings are:
Waiting for my meds to kick in and hurting so intensely until they do. Being unable to get out of bed sometimes. Needing to use a cane to walk a few feet down the hall to the bathroom.
7. My favorite medical TV show is:
I'm not sure I have one right now. It used to be House, but... I'm not ok with what they did last season in the finale. They basically made him a poster-boy for domestic violense. Yes, he went to jail, and he's being punished... but this is House. He hasn't changed, not really, and it's not really enough of a redemption story arc in what I've seen so far. I watch it on Hulu because I'm not going to give money directly to the show any more.
8. A gadget I couldn’t live without is:
My computer and my Nook Color.
9. The hardest part about nights are:
Trying to get to sleep. I've answered the morning/night questions more as "when you wake up" and "when you try to go to sleep"... I don't have a regular sleep schedule right now because I haven't been able to sleep well for the past while, particularly the past few months. Even with sleep meds, I often have a lot of trouble getting to sleep, and then I either sleep for a long, long time and wake up feeling completely un-refreshed, or I sleep for a short amount of time and end up wide awake even though I'm still tired. I don't get restorative sleep... pretty much ever. And that causes my pain to be worse, and the pain causes more problems sleeping, and I'm just fucked.
10. Each day I take:
Oh, dear gods. Ok, I'll try to remember this (and I'll give the full list, not just the dailies):
Daily prescription meds:
* Vicodin - 3x daily
* Carisoprodol / Soma - 2x daily (need to get that bumped back to 3x, the TMJD has been worse since they put me down to 2x)
* Tramadol / Ultram - 4x daily
* Gabapentin - 5 pills daily, in a 1/1/3 config
* Metaprolol - 1/2 pill daily (really want to go off of this)
* Prednisone - 2 pills daily
* Triazolam / Halcion - 1-2 pills nightly
Weekly prescription meds:
* Methotrextate - 6 pills
Biweekly prescription meds:
* Humira - auto-injector
Daily OTC meds / supplements:
* Zantac - 3x daily
* Digestive enzymes - 2 pills, 3x daily
* Folic acid - 1x daily (to help buffer the MTX)
* Multivtiamin - 1x daily (to help buffer the prednisone)
PRN Meds:
* Prochlorperazine / Compazine - for nausea
* Eletriptan / Relpax - for migraines
11. Regarding alternative treatments, I:
I've done Reiki (I'm a level 2) and it helps some, but only for a bit. And it's hard to handle with my allodynia (touch sensitivity).
I'm curious to try accupuncture. I think that may be one of the things on my list for 2012.
12. If I had to choose between an invisible illness or visible I would choose:
I don't know. I hear a lot of people say visible because they get judged for having an invisible illness, and that people think they're faking it. I haven't run into that, especially since it got bad enough that I need a walking aid. I've had people give me looks when I park in a handicapped spot, but those looks turn to sympathy when they see me get of the car and use my cane. I guess that it's bad enough that it's not truly invisible at this point.
I do have to say that there's a big culture difference out here in WA than back in New England. Washington folks don't believe the "by your own bootstraps" BS. People see my cane and they get very helpful. I was at Best Buy the other day, and a store clerk specifically tracked me down after I had wandered off because he saw I had been waiting in line for a bit to ask a question. At Starbucks I've had them specifically tell me to just wait where I was and they'd bring things to me instead of having me get served at the standard bar. Little things like that, on a regular basis. I've even had other shoppers help me in stores before, without being prompted. I never saw that back East. People would help people they knew, but otherwise, it was none of their business and they should stay out of it.
Hell, my work-- I went from commuting to work every day to at this point coming into the office once every other week or so. And at my last review they gave me glowing marks, commented on little things about how I could communicate on issues better, and didn't even bring up the subject of me commuting at all. I... was pretty astounded.
I like living here a lot more.
13. Regarding working and career:
I'm so very, very blessed by having a tolerant and supportive workplace. I don't know what I would do without Livemocha. I wouldn't be able to handle commuting to Seattle daily again-- not even with someone else driving me every day, and that's not possible anyways. They've been wonderful to me. The only complaint I have is that they haven't hired me permanent, so I don't get benefits, but that may be helping with tolerance for me because I'm still hourly.
14. People would be surprised to know:
How badly I'm really coping with all of this.
15. The hardest thing to accept about my new reality has been:
That even if it gets better, I'm still going to deal with this for the rest of my life. It's always going to be a question of degrees. Even if I get the RA to go into remission I will still have the fibro. And I doubt I can get both to go in remission. And even if I do, I will still have some issues due to the JHMS, and that can't go into remission, it's congential and degenerative.
16. Something I never thought I could do with my illness that I did was:
I don't think there's anything that I can't do, per se. There are things I don't want to do, but I can usually do anything I need to if I push. But I'll always pay for it, and the price is usually too steep for me to want to pay it.
17. The commercials about my illness:
I haven't seen any, really. I know there are some for fibro, but the only way I see commercials is on Hulu and there aren't many med commercials airing on Hulu.
18. Something I really miss doing since I was diagnosed is:
Having a regular sex life. Seriously, I usually hurt too much to have sex, and when I do have sex, I hurt worse afterwards. I get screwed over because I don't really get an endorphin high-- I get a quick enjoyable orgasm for a few seconds, and then the pain floods back in.
19. It was really hard to have to give up:
It's kind of weird for me to say, because I'm such an introvert, but... social interaction. I mostly socialized with people at work, and now that I'm commuting so infrequently, I've felt very isolated and lonely as a result. I've tried to engage a bit more in online communities because of this.
20. A new hobby I have taken up since my diagnosis is:
Not really new, per se... but I've recently gone back to programming on a MUD, The Last Sunrise, and working on my own MUD, Winds of Storm. I've also gotten involved with helping develop the Plex channel for the Roku media player.
21. If I could have one day of feeling normal again I would:
Takeelialshadowpine to a nice hotel and do wicked, wicked things to her. All. Day. Long.
Seriously.
22. My illness has taught me:
Patience. Limitations.
23. Want to know a secret? One thing people say that gets under my skin is:
"Get better." Please... just... don't. I'm not going to, not anytime soon, and not completely, and I really don't need to be reminded of this fact. And I know you don't mean it this way, but you're phrasing it like an order. And you're telling me to do something that is not within my control. I know you mean "I hope you feel better soon", but... the way you say it to me? Matters.
24. But I love it when people:
Tell me that they're thinking about me. Tell me that they love me. Tell me that they wish they could make my pain go away. Keep me company when I'm lonely.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Broken and bleeding but not beaten..."
26. When someone is diagnosed I’d like to tell them:
Find someone to help you out, even if it's just to talk through the issues. You can't do it alone.
27. Something that has surprised me about living with an illness is:
How understanding and helpful a lot of people are. I grew up in the New England "self reliance" culture where having a disability was your issue to deal with, and don't you dare make it anyone else's. I've gotten a lot of support from people, much more than I ever expected.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Some friends got together and giftedelialshadowpine and I a Nook Color. It was in part a thank you for all the work we did helping out at a site, and it was in part a "we know you could use this because of the shit you're going through". It was unexpected, amazing, and wonderful... and so damned useful. I didn't know that reading could be non-painful again, because holding a large hardcover book is just so painful with how my hands hurt at this point.
29. I’m involved with Invisible Illness Week because:
I'm doing this outside of IIW, because I've been meaning to do this for a while, and I've just finally found the spoons to get to it. I'm not even sure when IIW is, because I nicked this fromamethystfirefly.
30. The fact that you read this list makes me feel:
Honored, and grateful, because you care enough to sit down and listen to me ramble about my personal problems.
1. The illnesses I live with are:
* Glaucoma (in remission)
* Hiatal hernia
* GERD (acid reflux)
* Fibromyalgia
* Severe rheumatoid arthritis
* JHMS (joint hypermobility syndrome), which is being reclassified as a subtype of EDS (Ehler-Dahnlo's Syndrome)
* Chronic tendinitis
* Joint subluxation (notably in my jaw and shoulders, though all my joints are loose)
* TMJD (probably due to my jaw subluxing, the muscles have to work to hard and end up cramping)
* Chronic muscle tension
* Migraines (known trigger: perfume/cologne) and tension headaches (see: TMJD)
* Depression
* Anxiety (known triggers: police, phones)
2. I was diagnosed with it in the year:
I'm not sure "it" is the right term, heh. I got together with
elialshadowpine in early 2005, and it took her about a year to get me to go see a doctor, so... most of these were diagnosed in 2006. Originally I was diagnosed with osteoarthritis due to the JHMS, but once I moved out here to Washington and broke down and saw a new rheumy (I had been waiting to get hired to get insurance to see the dr, but I couldn't wait any longer) he re-diagnosed me with rheumatoid arthritis.RA being an autoimmune disorder instead of just a "wear and tear" disorder, we've been trying to stop the progression. So far without success.
3. But I had symptoms since:
All my life. A lot of them were minor things that weren't a problem, but looking back, I can see the progression. In 2004 I had two car accidents. My health started rapidly deteriorating after that. A common element of fibromyalgia is that people are predisposed to it (genetics, etc.) but then a traumatic event often triggers the progression of symptoms. That is definitely the case in my situation.
4. The biggest adjustment I’ve had to make is:
I think this is actually two things, equally important.
One is that I never not hurt. It's not a question of if I hurt, it's a question of how much. I never, ever, ever get below a 5 on the pain scale... and I'm usually floating between a 7 and a 9.
The other is that I can't help other people like I'm used to doing. I'm used to helping everyone else, I'm not used to being the one needing help. It's been hard for me to set limits and ask for help. I'm doing better this year with that than in previous ones, but it's still difficult for me sometimes, and it's very difficult to see someone like
elialshadowpine or paul_zap need help and not be able to provide it.5. Most people assume:
That I'm dealing well with the illness. I put on a good front for the people at work... I don't sugar-coat things but I tend to avoid letting my pain show or letting my frustration come out. They see a small slice of what I deal with, and think that I'm so upbeat and positive about things. Fuck, I wish that were true. They don't know how many times a week I spend crying in pain...
6. The hardest part about mornings are:
Waiting for my meds to kick in and hurting so intensely until they do. Being unable to get out of bed sometimes. Needing to use a cane to walk a few feet down the hall to the bathroom.
7. My favorite medical TV show is:
I'm not sure I have one right now. It used to be House, but... I'm not ok with what they did last season in the finale. They basically made him a poster-boy for domestic violense. Yes, he went to jail, and he's being punished... but this is House. He hasn't changed, not really, and it's not really enough of a redemption story arc in what I've seen so far. I watch it on Hulu because I'm not going to give money directly to the show any more.
8. A gadget I couldn’t live without is:
My computer and my Nook Color.
9. The hardest part about nights are:
Trying to get to sleep. I've answered the morning/night questions more as "when you wake up" and "when you try to go to sleep"... I don't have a regular sleep schedule right now because I haven't been able to sleep well for the past while, particularly the past few months. Even with sleep meds, I often have a lot of trouble getting to sleep, and then I either sleep for a long, long time and wake up feeling completely un-refreshed, or I sleep for a short amount of time and end up wide awake even though I'm still tired. I don't get restorative sleep... pretty much ever. And that causes my pain to be worse, and the pain causes more problems sleeping, and I'm just fucked.
10. Each day I take:
Oh, dear gods. Ok, I'll try to remember this (and I'll give the full list, not just the dailies):
Daily prescription meds:
* Vicodin - 3x daily
* Carisoprodol / Soma - 2x daily (need to get that bumped back to 3x, the TMJD has been worse since they put me down to 2x)
* Tramadol / Ultram - 4x daily
* Gabapentin - 5 pills daily, in a 1/1/3 config
* Metaprolol - 1/2 pill daily (really want to go off of this)
* Prednisone - 2 pills daily
* Triazolam / Halcion - 1-2 pills nightly
Weekly prescription meds:
* Methotrextate - 6 pills
Biweekly prescription meds:
* Humira - auto-injector
Daily OTC meds / supplements:
* Zantac - 3x daily
* Digestive enzymes - 2 pills, 3x daily
* Folic acid - 1x daily (to help buffer the MTX)
* Multivtiamin - 1x daily (to help buffer the prednisone)
PRN Meds:
* Prochlorperazine / Compazine - for nausea
* Eletriptan / Relpax - for migraines
11. Regarding alternative treatments, I:
I've done Reiki (I'm a level 2) and it helps some, but only for a bit. And it's hard to handle with my allodynia (touch sensitivity).
I'm curious to try accupuncture. I think that may be one of the things on my list for 2012.
12. If I had to choose between an invisible illness or visible I would choose:
I don't know. I hear a lot of people say visible because they get judged for having an invisible illness, and that people think they're faking it. I haven't run into that, especially since it got bad enough that I need a walking aid. I've had people give me looks when I park in a handicapped spot, but those looks turn to sympathy when they see me get of the car and use my cane. I guess that it's bad enough that it's not truly invisible at this point.
I do have to say that there's a big culture difference out here in WA than back in New England. Washington folks don't believe the "by your own bootstraps" BS. People see my cane and they get very helpful. I was at Best Buy the other day, and a store clerk specifically tracked me down after I had wandered off because he saw I had been waiting in line for a bit to ask a question. At Starbucks I've had them specifically tell me to just wait where I was and they'd bring things to me instead of having me get served at the standard bar. Little things like that, on a regular basis. I've even had other shoppers help me in stores before, without being prompted. I never saw that back East. People would help people they knew, but otherwise, it was none of their business and they should stay out of it.
Hell, my work-- I went from commuting to work every day to at this point coming into the office once every other week or so. And at my last review they gave me glowing marks, commented on little things about how I could communicate on issues better, and didn't even bring up the subject of me commuting at all. I... was pretty astounded.
I like living here a lot more.
13. Regarding working and career:
I'm so very, very blessed by having a tolerant and supportive workplace. I don't know what I would do without Livemocha. I wouldn't be able to handle commuting to Seattle daily again-- not even with someone else driving me every day, and that's not possible anyways. They've been wonderful to me. The only complaint I have is that they haven't hired me permanent, so I don't get benefits, but that may be helping with tolerance for me because I'm still hourly.
14. People would be surprised to know:
How badly I'm really coping with all of this.
15. The hardest thing to accept about my new reality has been:
That even if it gets better, I'm still going to deal with this for the rest of my life. It's always going to be a question of degrees. Even if I get the RA to go into remission I will still have the fibro. And I doubt I can get both to go in remission. And even if I do, I will still have some issues due to the JHMS, and that can't go into remission, it's congential and degenerative.
16. Something I never thought I could do with my illness that I did was:
I don't think there's anything that I can't do, per se. There are things I don't want to do, but I can usually do anything I need to if I push. But I'll always pay for it, and the price is usually too steep for me to want to pay it.
17. The commercials about my illness:
I haven't seen any, really. I know there are some for fibro, but the only way I see commercials is on Hulu and there aren't many med commercials airing on Hulu.
18. Something I really miss doing since I was diagnosed is:
Having a regular sex life. Seriously, I usually hurt too much to have sex, and when I do have sex, I hurt worse afterwards. I get screwed over because I don't really get an endorphin high-- I get a quick enjoyable orgasm for a few seconds, and then the pain floods back in.
19. It was really hard to have to give up:
It's kind of weird for me to say, because I'm such an introvert, but... social interaction. I mostly socialized with people at work, and now that I'm commuting so infrequently, I've felt very isolated and lonely as a result. I've tried to engage a bit more in online communities because of this.
20. A new hobby I have taken up since my diagnosis is:
Not really new, per se... but I've recently gone back to programming on a MUD, The Last Sunrise, and working on my own MUD, Winds of Storm. I've also gotten involved with helping develop the Plex channel for the Roku media player.
21. If I could have one day of feeling normal again I would:
Take
elialshadowpine to a nice hotel and do wicked, wicked things to her. All. Day. Long.Seriously.
22. My illness has taught me:
Patience. Limitations.
23. Want to know a secret? One thing people say that gets under my skin is:
"Get better." Please... just... don't. I'm not going to, not anytime soon, and not completely, and I really don't need to be reminded of this fact. And I know you don't mean it this way, but you're phrasing it like an order. And you're telling me to do something that is not within my control. I know you mean "I hope you feel better soon", but... the way you say it to me? Matters.
24. But I love it when people:
Tell me that they're thinking about me. Tell me that they love me. Tell me that they wish they could make my pain go away. Keep me company when I'm lonely.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Broken and bleeding but not beaten..."
26. When someone is diagnosed I’d like to tell them:
Find someone to help you out, even if it's just to talk through the issues. You can't do it alone.
27. Something that has surprised me about living with an illness is:
How understanding and helpful a lot of people are. I grew up in the New England "self reliance" culture where having a disability was your issue to deal with, and don't you dare make it anyone else's. I've gotten a lot of support from people, much more than I ever expected.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Some friends got together and gifted
elialshadowpine and I a Nook Color. It was in part a thank you for all the work we did helping out at a site, and it was in part a "we know you could use this because of the shit you're going through". It was unexpected, amazing, and wonderful... and so damned useful. I didn't know that reading could be non-painful again, because holding a large hardcover book is just so painful with how my hands hurt at this point.29. I’m involved with Invisible Illness Week because:
I'm doing this outside of IIW, because I've been meaning to do this for a while, and I've just finally found the spoons to get to it. I'm not even sure when IIW is, because I nicked this from
amethystfirefly.30. The fact that you read this list makes me feel:
Honored, and grateful, because you care enough to sit down and listen to me ramble about my personal problems.
