they say i'll adjust, god knows i must / but i'm not sure how
Tuesday, July 9th, 2013 11:59 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
erikaSo, doctor is still pretty sure I have fibromyalgia, but some of the tests came back positive for inflammation (that shouldn't have) and they've been like that for years, so I'm seeing a rheumatologist on Wednesday to rule out, like——rheumatology things. Arthritis? I don't know. Stuff.
She wants to double check and rule out lupus, lyme, a number of autoimmune diseases... although I do not have Lyme, as far as they can tell. 'As far as they can tell' (as many people online can inform you) is not very far, but my lifestyle (staying inside almost all the time, suburbia with low incidence of Lyme, dogs who get skin treated for ticks every month) is not particularly likely even if I did have most of the symptoms of a chronic or recent infection, which I don't. So... yeah.
Interestingly, every single generally healthy person I know (with the exception of two,![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
elfbabe and Josh's aunt Lisa) has said "oh, fibromyalgia, that's good!"
It's not goddamn good. I appreciate their attempts to be positive (barely), but their sensitivity needs some major fucking work. When you start looking at the list of things that they have to rule out and HOPE for Lyme Disease, because that's theoretically treatable... this is not a good place to be. And people don't want to recognize that.
What's even worse—and you wouldn't think it would be—is that my family members and friends ARE now willing to recognize that I need accomodations. (Mostly family members.) I've already gotten offers of help and questions about how they need to change their behavior or what accessibility / accommodations I need, and it's not that I don't appreciate it, but I just feel like ... six months ago my symptoms were exactly the same but nobody thought it was a physical illness, and I got jack shit from you people.
So it's like... who's dropped the ball here? The three dozen doctors I've seen who should've CONTEMPLATED this diagnosis YEARS ago? The people who are now suddenly trying to be helpful when before it was ignorable because whatever was wrong was all in my head? The people making insensitive comments about how great it is that I now know I have a chronic, incurable disease because it may or may not be treatable?
Ignorance is only bliss because it allows for hope.
(Also, one of my closest friends actually asked me how I could have a condition that is known for chronic pain since I used to self-injure.
I was basically like, how is that sequence of words even a fucking THING that just was communicated to me? What the hell kind of filters do you have that you actually SAID THAT to ANYONE? HOW DOES THIS WORK?
[Also, I did handle it at the time, and I'm just using it as an example of how people say THE WEIRDEST SHIT BECAUSE THEY HAVE NO IDEA WHAT TO SAY. So don't worry that this person is horrible, because they really aren't, it was just a fucked up thing to say, is my point, and people are saying stupid shit like that ALL THE TIME.])
I don't even want to talk about how EVERY FUCKING PERSON has said "oh, that makes sense" but I'm going to anyway.
Yes, when I tell them that I probably have fibromyalgia, the next words out of their mouth are "oh, that makes a lot of sense"——OKAY THEN WHY DIDN'T ANYONE EVER MENTION IT TO ME aslkdfja;lkdjfa;lkdfja;lkdjf ARRGGGH.
At least my social worker apologized for never thinking of that explanation before, she said it was because I never mentioned being in pain constantly.
And I really struggle, because isn't that just complaining? What the fuck, people—make up your goddamn minds. People in my life, you have a choice to make: you can tell me you don't want to hear me complain because it's whining but if you do that, then YOU CAN'T FUCKING TELL ME I NEVER COMPLAINED SO YOU DIDN'T KNOW ANYTHING WAS WRONG.
(My social worker did not do this. Many other people in my life have. Mostly family.)
Regardless, the appropriate reaction to someone telling you they're likely going to be formally diagnosed with a chronic physical illness that has no cure and no medication that works for more than 1/3rd of people at any time is not: "oh, right, I guess I should probably have given a shit about the fact that you're totally exhausted and can't think coherently and had constant muscle pain all the time before this, huh."
On the other hand, people who have chronic MI have been the people saying "god, that sucks, I'm sorry" and the people saying "wow, I'd be super angry no one figured this out before" and saying "oh, I have a friend who has that, do you want me to ask them if you can have their email address"? So, so grateful for people who have experience with how compassion and validation can absolutely be the best thing to offer someone.
On the gripping hand, I still had to explain to Josh that telling me that things would get better now that we knew was NOT HELPFUL when what I wanted was him to agree with me that things sucked NOW, and I had to make that explanation in the very tiniest words possible while I was sobbing my eyes out.
On the fourth paw, I actually had to fire the first physical therapist I saw last week because she was amazingly dickish. I guess at least I'm standing up for myself now but I've never FIRED a doctor before.
On the fifth tentacle, we finally found a house! But now we have to move. And I have to pack.
I don't even know anymore, I have like twelve more appendages, but regardless, here it is. Here is my pain, here is what is going through my head——just take it, this morass of words and confusion and pain, write it down on a piece of paper, crumple it into a ball, throw it away for me, please. I want to be after this, not during it.
There is only during. There is no after. That's what this word, chronic, means.
Still———
Having a new diagnosis is having a different lens with which to view the world. Writing this, I realize I'm no longer angry with all the "oh, that makes so much sense" people because I see that now. I know my frustrations remain valid, regardless, yet it's the "oh!" of recognition that they uttered, not a dismissal.
And I do know what it's like to have these things come into focus. How many times have I laid in bed, while my brain plays the part of optometrist and says "1, or ... 2? 1, or 2?" while flipping the lenses: no chronic illness, chronic illness. No chronic illness... or chronic illness? Lazy, or sick? Broken, or healing? Unwilling to try or stubborn enough to keep going?
And I say to myself: "two," and I get up. I take the pain killers and I stretch gently and I pace myself. It's coming into focus.
She wants to double check and rule out lupus, lyme, a number of autoimmune diseases... although I do not have Lyme, as far as they can tell. 'As far as they can tell' (as many people online can inform you) is not very far, but my lifestyle (staying inside almost all the time, suburbia with low incidence of Lyme, dogs who get skin treated for ticks every month) is not particularly likely even if I did have most of the symptoms of a chronic or recent infection, which I don't. So... yeah.
Interestingly, every single generally healthy person I know (with the exception of two,
elfbabe and Josh's aunt Lisa) has said "oh, fibromyalgia, that's good!"It's not goddamn good. I appreciate their attempts to be positive (barely), but their sensitivity needs some major fucking work. When you start looking at the list of things that they have to rule out and HOPE for Lyme Disease, because that's theoretically treatable... this is not a good place to be. And people don't want to recognize that.
What's even worse—and you wouldn't think it would be—is that my family members and friends ARE now willing to recognize that I need accomodations. (Mostly family members.) I've already gotten offers of help and questions about how they need to change their behavior or what accessibility / accommodations I need, and it's not that I don't appreciate it, but I just feel like ... six months ago my symptoms were exactly the same but nobody thought it was a physical illness, and I got jack shit from you people.
So it's like... who's dropped the ball here? The three dozen doctors I've seen who should've CONTEMPLATED this diagnosis YEARS ago? The people who are now suddenly trying to be helpful when before it was ignorable because whatever was wrong was all in my head? The people making insensitive comments about how great it is that I now know I have a chronic, incurable disease because it may or may not be treatable?
Ignorance is only bliss because it allows for hope.
(Also, one of my closest friends actually asked me how I could have a condition that is known for chronic pain since I used to self-injure.
I was basically like, how is that sequence of words even a fucking THING that just was communicated to me? What the hell kind of filters do you have that you actually SAID THAT to ANYONE? HOW DOES THIS WORK?
[Also, I did handle it at the time, and I'm just using it as an example of how people say THE WEIRDEST SHIT BECAUSE THEY HAVE NO IDEA WHAT TO SAY. So don't worry that this person is horrible, because they really aren't, it was just a fucked up thing to say, is my point, and people are saying stupid shit like that ALL THE TIME.])
I don't even want to talk about how EVERY FUCKING PERSON has said "oh, that makes sense" but I'm going to anyway.
Yes, when I tell them that I probably have fibromyalgia, the next words out of their mouth are "oh, that makes a lot of sense"——OKAY THEN WHY DIDN'T ANYONE EVER MENTION IT TO ME aslkdfja;lkdjfa;lkdfja;lkdjf ARRGGGH.
At least my social worker apologized for never thinking of that explanation before, she said it was because I never mentioned being in pain constantly.
And I really struggle, because isn't that just complaining? What the fuck, people—make up your goddamn minds. People in my life, you have a choice to make: you can tell me you don't want to hear me complain because it's whining but if you do that, then YOU CAN'T FUCKING TELL ME I NEVER COMPLAINED SO YOU DIDN'T KNOW ANYTHING WAS WRONG.
(My social worker did not do this. Many other people in my life have. Mostly family.)
Regardless, the appropriate reaction to someone telling you they're likely going to be formally diagnosed with a chronic physical illness that has no cure and no medication that works for more than 1/3rd of people at any time is not: "oh, right, I guess I should probably have given a shit about the fact that you're totally exhausted and can't think coherently and had constant muscle pain all the time before this, huh."
On the other hand, people who have chronic MI have been the people saying "god, that sucks, I'm sorry" and the people saying "wow, I'd be super angry no one figured this out before" and saying "oh, I have a friend who has that, do you want me to ask them if you can have their email address"? So, so grateful for people who have experience with how compassion and validation can absolutely be the best thing to offer someone.
On the gripping hand, I still had to explain to Josh that telling me that things would get better now that we knew was NOT HELPFUL when what I wanted was him to agree with me that things sucked NOW, and I had to make that explanation in the very tiniest words possible while I was sobbing my eyes out.
On the fourth paw, I actually had to fire the first physical therapist I saw last week because she was amazingly dickish. I guess at least I'm standing up for myself now but I've never FIRED a doctor before.
On the fifth tentacle, we finally found a house! But now we have to move. And I have to pack.
I don't even know anymore, I have like twelve more appendages, but regardless, here it is. Here is my pain, here is what is going through my head——just take it, this morass of words and confusion and pain, write it down on a piece of paper, crumple it into a ball, throw it away for me, please. I want to be after this, not during it.
There is only during. There is no after. That's what this word, chronic, means.
Still———
Having a new diagnosis is having a different lens with which to view the world. Writing this, I realize I'm no longer angry with all the "oh, that makes so much sense" people because I see that now. I know my frustrations remain valid, regardless, yet it's the "oh!" of recognition that they uttered, not a dismissal.
And I do know what it's like to have these things come into focus. How many times have I laid in bed, while my brain plays the part of optometrist and says "1, or ... 2? 1, or 2?" while flipping the lenses: no chronic illness, chronic illness. No chronic illness... or chronic illness? Lazy, or sick? Broken, or healing? Unwilling to try or stubborn enough to keep going?
And I say to myself: "two," and I get up. I take the pain killers and I stretch gently and I pace myself. It's coming into focus.
no subject
on Tuesday, July 9th, 2013 05:50 pm (UTC)However, don't wish for Lyme. Please. I know someone with Lyme disease who would gladly trade. Supposedly treatable = pain no one believes (she gets told she's shamming it all the time even as she can't even get out of bed because it hurts too much), and she's wheelchair-bound, and her life expectancy is anyone's guess (she often gets the "how are you still alive?" treatment).
no subject
on Tuesday, July 9th, 2013 06:20 pm (UTC)ETA: I would also like to note that in an entry where the main theme is regarding the general insensitivity of everyone around me and how overwhelmed I am by it, commenting to basically tell me to be thankful that it's probably not X disease because look at this person you know who has it way worse and would totally trade... is really just proving my point.
no subject
on Tuesday, July 9th, 2013 06:41 pm (UTC)no subject
on Sunday, August 11th, 2013 12:03 am (UTC)The ridiculously amazingly wonderful thing when I was first diagnosed with Lyme after eight years with Fibromyalgia and a year of horrible joint pain so bad I would scream? The hope that my situation would improve, and I wouldn't be told over and over again to "eat right and exercise more" for my excruciating chronic pain.
It's not about wanting another disease; they all frelling suck in one form or another (and in similar/dissimilar ways). It's about that hope of a cure.
no subject
on Tuesday, July 9th, 2013 07:44 pm (UTC)*sigh* Sorry, not trying to make this post about me...just...commiserating with the way in which people try to offer support but sometimes blindingly fail at it. I will admit that I don't understand what the pain you experience is like, but if there's anything supportive I can do from my end, please let me know.
no subject
on Tuesday, July 9th, 2013 08:37 pm (UTC)Love. Love and welcome and recognition and enjoy your stay.
(I am not fibro. I am in constant pain & I can't forsee a future when I won't need medicating for my mental illness, and aren't incurable chronic illnesses great, but - yes. Hello.)
no subject
on Wednesday, July 10th, 2013 12:04 am (UTC)Regardless of any asinine comments I may make, I can imagine how much it sucks for you right now and you have my unconditional love and sympathy.
no subject
on Monday, August 12th, 2013 07:20 pm (UTC)no subject
on Wednesday, July 10th, 2013 11:25 am (UTC)I'm sorry things are so shit for you right now.
no subject
on Monday, August 12th, 2013 07:20 pm (UTC)no subject
on Wednesday, July 10th, 2013 11:31 am (UTC)Cause, they should be checking all that stuff thoroughly, and despite all that, I wasn't diagnosed with my RA until 2010 even though I was diagnosed with fibro in 2004. (It was not a misdiagnosis; I have both. I really won the genetic lottery...)
*BIG HUGS* offered, I have so much sympathy.
no subject
on Wednesday, July 10th, 2013 02:02 pm (UTC)I would love to know, eek! I have my appointment in an hour, so hopefully I'll find some stuff online too about this.
no subject
on Thursday, July 11th, 2013 03:37 am (UTC)no subject
on Thursday, July 11th, 2013 05:16 am (UTC)But still, this is good, that I can point to the ESR/CRP tests and go "this is why there is worry that I may have something other than fibromyalgia."
no subject
on Thursday, July 11th, 2013 07:45 am (UTC)But yes make sure the specialist doesn't pooh-pooh because the levels are elevated but not enormously. The specialist that diagnosed me told me that it meant that they caught it early and that it was even more important to get me on medication to *keep* it from getting to the point it would show up on bloodwork, vs. saying "oh it's not that bad" and letting it GET that bad.
no subject
on Saturday, July 13th, 2013 12:04 pm (UTC)(And, no aspersions against your friend's general awesomeness intended, but what is that about chronic pain and self-injury being somehow incompatible? I just... what? If we're going for superficially paradoxical situations, I've used self-inflicted pain to manage other acute physical pain I was simultaneously experiencing, so I'm pretty sure there are more things in heaven and earth, here.)
There is so much in this entry. The clarity of the metaphor at the end is amazing, but I think I have at least as much admiration for the tangle that precedes it. Engaging with and talking about something that hasn't yet settled into a more stable and knowable form can be really hard, at least for me. But I think it can also be really valuable.
no subject
on Monday, August 12th, 2013 07:26 pm (UTC)Engaging with and talking about something that hasn't yet settled into a more stable and knowable form can be really hard, at least for me. But I think it can also be really valuable.
I'm trying to do this more often. It's very difficult. I want things to be neatly resolved. That's not how life is. sigh.
no subject
on Tuesday, August 13th, 2013 07:25 am (UTC)Yes to all of this. Damn it.