fckingfibro-blog

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From Aysha Bee’s status on facebook:

“Being able to prioritize diet is a privilege because :  ALWAYS eating healthy food means...

1) You have the money to buy healthy food. ***Some people don't have the money to buy a completely balanced diet. A couple pieces of fruit and some packs of Ramen noodles might be all they can do for the week. 

2) You have the transportation to get to health food stores. ***Everyone doesn't live in a big city. Some people don't have cars or local health food stores. So they have to limit their trips to whatever grocery store they can find. Since they don't know when they will be back, they might have to buy what they know won't spoil quickly. 

3) You have the time, energy, open opportunity, and convenience of preparing healthy food everyday. 

***Some people don't even has as much as a kitchen. ***Some people have to work for hours and hours and don't have the time/energy/convenience to prepare healthy food everyday. 

4) You had the resources to educate yourself on what a healthy diet consists of or what healthy diet is suitable for yourself. 

***Some people don't have that same access to the internet, books, or a nutritionist. They may not even have the opportunity to experiment with different diets to see what works for them. 

So just be understanding and supportive. Offer help if you can (REAL tangible help though...not unsolicited and judgmental advice).   Never be preachy. Preaching has never made anyone commit to a healthy diet. Never assume that diet is easy for everyone just because you have it together. Just keep this in mind always. [heart emoji]“

So much this! Some additional things to keep in mind can be disability and age and parental status. And for any white folks reading this, all of these are influenced by race, as well.

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Fuck yes. And if people try to exclude you from events you’re willing to flare for, remind them that it’s your choice and body, not theirs. You get to decide, no one else.

Sometimes Life is Worth the Pain

Don’t ever let anyone tell you that you should’ve done less because you’re now in pain.

As a disabled person, I’m often faced with the choice of enjoying myself now and paying for it later, or missing out on the things that are important to me.

Sometimes I know going into something that it will cause a flare leaving me out of commission for a day or three. I need to determine whether it’s worth that or not.

Able bodied people take this for granted but us disabled folks weigh this constantly.

For all my disabled peeps out there just remember: sometimes life is worth the flare.

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Fuck Non-Disabled People

I’m having one of those days where I resent the hell out of non-disabled folks for being able to access shit simply by way of being non-disabled.

When I wasn’t this ill, at least I could work to get some income. Don’t get me wrong, it was never enough, and my whiteness certainly helped me in cases where it would have been worse had I not been white, and I still struggled with being undiagnosed autistic, but shit, at least I was able to fucking work and have access to some money. It’s fucking horrible to have absolutely no income of your own and to be completely reliant on someone else to provide that. I have so little control over my life that is directly and specifically caused by being disabled, and it makes me angry as hell because non-disabled people could be doing shit to change that, but they fucking don’t.

Instead, they complain and interrogate us when we ask for even just the amount of money it would take simply to survive. They become angry and bitter when asked to accommodate our disabilities, acting as though our requests now oppress them despite very little actual inconvenience to them-- or even if it is inconvenient to them, so the fuck what? We’re fucking humans, and we deserve lives of good quality, not just whatever trash they dump out for us like we’re scavengers at a landfill. They don’t believe us when we talk of oppression, despite their willing disbelief being a prime example of that oppression. They abuse us, and they get away with it because they fucking can. They murder us, and they get away with it because they fucking can. They demand that we attempt to be neurotypical or non-disabled when it’s clear that we’re physically incapable of doing so at all or without significant negative consequences to our bodies and minds. And when we can’t conform despite trying and try to work with our disabled bodies instead of against them, we’re accused of using others as tools, of not trying hard enough, of looking to be sick, of looking for attention, of just trying to be “different” for difference’s sake.

I’m in a position now where I would never have been had I been non-disabled, and it makes me so fucking angry and resentful at the people, individually and collectively, who hold power over me and deny me access to a qualitative and accommodated life.

Fuck non-disabled people right now, seriously. Accusing us of being the problem when we suffer from their shitty system they created for us in the first place and despite our desperate struggling to help ourselves as much as possible within our natural parameters. Non-disabled people as a group are immoral, gaslighting, abusive, murdering assholes.

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Focusing on “curing” disability instead of accommodating disability leads to eugenics against disabled people. Being disabled/impaired is one of the natural ways of being human. So focusing solely, as a society, on “cures” instead of accommodation not only acts to make our lives inaccessible today when we need it, but also seeks to destroy disabled people overall by refusing to accept disability as a natural occurrence and something to simply be accommodated and respected.

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The medical community is so fucking erasive of nonbinary and binary trans people. It’s so frustrating to go through medical source after medical source and meet doctor after doctor and meet nurse after nurse and technician after technician and pharmacist after pharmacist and never seeing yourself or trans folks represented, studied (for non-trans related issues), respected in appointments, or even thought of, let alone discussed. Do you know how fucking violent that shit is? I’ve not once been to a single doctor or medical appointment in the last two solid years with someone who didn’t misgender me, assume my gender, use the wrong pronouns before or after being told the correct ones repeatedly, ignore the information I gave them on trans identities in an attempt to help them understand, refuse to note in my chart my proper gender identity, or otherwise commit violence against me. And I can’t just fucking not go because I felt like I was dying some days from the pain and fatigue and needed help desperately. I was forced to put up with their shit day after day for years in the hopes of getting diagnosed and maybe even a little better.

So spare me, honestly, the next time the medical field comes out with some shit like saying trans identities are valid because until they put their words into action, they are no less violent than the people who hate us and actively want us dead through social and legislative violence, especially because there are trans people who do die from lack of medical care because they can’t make the choice I did because for some of us, it’s not a fucking choice.

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Sometimes, on good days, I catch myself thinking, “You’re not really disabled. Look, you can do ___ and ___ just fine. You just don’t want to do ___.” And I have to remind myself that I only get good days through luck and my own dedication to healing. That those good days are a result of chance and the circumstances I’ve worked hard to create that enable that good day to happen (but mostly chance) and that it takes aaaaaages to get to that point. And that sometimes it still doesn’t happen even when I work at it because that’s not how this works.

I’m not a vending machine that I can put healing and rest coins into and automatically pop out a good day like a fucking snickers bar, therefore implying that I’m just refusing to pop in the necessary payment to function. This damn vending machine is the one that’s broken and keeps eating my fucking quarters, never giving me anything back one day but suddenly giving me 12 packets of something another random day after trying to get something out of it for six months. It’s just out-of-order, not a trick.

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Brain fog has more of a negative impact on my daily life then pain ever has or likely will. I can work through the pain if it’s not at its worst. Not being able to even focus on anything, though? Yeah, that shit’s so much harder to work around.

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Got a medical marijuana appointment coming up in about a week and a half. I’m so excited! Really hoping they don’t give me shit about it and that they’re able to get me something sooner rather than later in terms of a prescription. They already told me over the phone that I’m required to submit to a urine drug test. Not happy with that, but fuck, I need relief. I’ve legit forgotten what it feels like to not be in pain every single moment in life.

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A Good Day

Ohhhhhhm’gosh, what a beautiful day yesterday was! ❤ [heart] I went to my first pain management specialist appointment yesterday and was really nervous about it, but it went amazingly well! Especially considering how many shitty doctors I’ve had to deal with before!

Went to see Dr. John Michalisin, Jr. for help with my chronic pain from fibro and my shoulder’s adhesive capsulitis. He was very respectful, kind, understanding, and listened to me and made sure to tell me I was the boss on how I wanted to pursue treatments. Hell yes!

I explained to him that I’d had some really bad experiences with doctors, particularly rheumatologists and psychiatrists, and that I just wanted some pain relief and help, and he took what I said to heart. He explained a little about fibro to me where my rheumatologist (who diagnosed me!) did not, and he happily covered the treatments usually used to help with the pain. He immediately explained how little treatments there are for fibro-- not to make me feel hopeless, but to inform me that the basics for fibro treatment are “eat nutritious foods, try to exercise when able, and rest/avoid stress,” which is really what

everyone on Earth should be trying to do as a simple baseline for health, so, he explained, that this was pretty much useless for actual treatment of fibro. He explained this to me in a way that made it clear that any failing for treating my fibro is not on me, the patient with the condition, but rather on the fact that fibro research is still in its infancy and not always taken seriously by the medical community. I really appreciated him saying that because that’s exactly the attitude I often encounter and fear with new doctors who look to use these “findings” to blame me and other patients for something they feel unequipped to treat.

He informed me that he feels the best method for treatment is a global treatment of the issue rather than targeting whichever part of my body is acting up at the moment and returning for a visit each month for an injection of some sort. I was pleased with his comment and expressed my desire to do this, as well, since I’m so sick and fucking tired of going in to see doctors all the time. He said that the first treatment typically attempted is an antidepressant or  gabapentin medication. I explained that I was really not wanting to attempt things like that, such as Cymbalta, Lyrica, etc, because I knew that they had a chance of suicidal ideation and depression, and I’d become highly suicidal and depressed while taking 3 different antidepressants in 2014 and was really scared that I might have another bad reaction to them when I had just this year started to recover finally. I told him I didn’t want to end up dead trying to treat my fibromyalgia, and he was totally cool with it (lol imagine that! It’s sad how absurd that sentence is and how many other doctors ignore me on this critical issue). He agreed that it could be risky since I have a history of responding poorly to medications and have an increasing allergy to many things I digest, food and medicine, and he said that we could exhaust other options first before returning to this option if necessary.

I mentioned to him that I had read many things online from various fibro sources and friends with chronic pain for pain help, including medical marijuana, TENS units, herbal remedies, muscle relaxants, sedatives, and so on, and that I wanted to try these before resorting to Cymbalta/Lyrica, etc. as a last resort only. He was very happy to give me a referral to an anesthesiologist who would be able to help me obtain a medical marijuana prescription, and he himself prescribed me both a low dose muscle relaxant and some generic lidocaine topical cream to help numb areas with high amounts of pain, such as my shoulder. He also made sure to point out to me that in case it wasn’t something my insurance would cover, lidocaine is available over the counter (OTC), which I hugely appreciated. I am always so grateful when doctors try to be mindful (on their own initiative) that poor and disabled people don’t have the same access and coverage that richer folks do.

He also had me do some movements to check my range of motion (ROM), explaining to me the things he was looking for as he did (always a plus when the doc wants you in on things), and was incredibly gentle when checking my pressure points. My rheumy, Dr. Mehta, had been unnecessarily rough when testing mine, nearly causing me to cry out from the pain as she repeatedly dug her fingers into tender spots, never once acknowledging the amount of pain she was clearly putting me in or explaining what she was looking for. It wasn’t until I looked online that I understood that this was a trigger point examination, but I also knew that she neglected the fact that she isn’t supposed to use more pressure than it takes to whiten your fingernail when you press it when examining these areas. I believe that because I’m fat, she probably felt (wrongly) that she would need to dig into my body to be able to feel those parts, but it was completely unnecessary and cruel on her part to do so. Dr. Michalisin, however, used the correct pressure amount, was kind in his approach, and even was apologetic, acknowledging that he was putting me in pain but explaining why it was necessary, which I greatly appreciated. He also tested for a significantly larger ROM in my body and especially shoulder than did Dr. Mehta, which I also appreciated. And to top off my respect for him, when I mentioned that I was on the verge of triggering a migraine with certain motions, he was totally fine with not having me do a certain movement with my head and neck that I knew could push me over the edge.

To be taken for my word and respected and deferred to about my experience is such an incredibly validating and humanizing experience that is frequently completely missing from healthcare. I am more accustomed to doctors immediately dismissing and even mocking my pain or insinuating that I am just lazy because I’m fat. Chronic pain is often not believed by doctors, and it’s even worse when you’re fat because they seem to feel you caused it to yourself and therefore kind of deserve whatever they give you in examination. So to have Dr. Michalisin treat me as human and deserving of respect simply by that right was something I am incredibly grateful for and will not relinquish. This is the kind of treatment every single fucking human being on the planet deserves. Period. Absolutely no excuses.

Dr. Michalisin also didn’t subject me to taking a urine sample to prove anything and didn’t even bring up the idea of signing some ridiculous contract stating that I wouldn’t seek medicinal pain treatment from anyone but him while in his care. I understand that doctors face difficulties and fears in their fields, but forcing people who have few options while suffering from chronic pain into coerced agreements is abusive, stigmatizing, and horrendous. Even if someone is using drugs considered illegal, that is still a medical fucking condition that deserves treatment. There is plenty of evidence globally that demonstrates the necessity of legalizing drugs and chemicals to remove stigma and help protect users and help prevent them from dying. There is plenty of evidence globally that being able to seek help for a substance use issue helps decrease the chance of overdose and death in users because they don’t have to hide shit they’re dealing with and can make sure to get help if they want/need it in a way that won’t criminalize or stigmatize them.

Now, granted, I told him straight up that I wouldn’t be able to use things like Tramadol and Percocet because they trigger migraines in me and that I was concerned about their use because of addiction issues that run in my family. So I can’t say for sure that if you go to him and are going to request/receive any controlled substances that he won’t ask you to submit a urine sample or sign a contract. I really hope he doesn’t, but I can’t know that from my experience. So if you go in to see him, please keep that in mind. (Also feel free to let me know, anonymously or otherwise, if that does become the case and you would like folks to have a heads up.)

Anywho, to continue on with the appointment, I also asked him about TENS units (a friend of mine uses one for their chronic pain and seems to find relief) and herbal remedies, including topical ointments and such. He said that research has shown that over time that TENS units don’t always work/don’t have a consistent showing of relief, but when I interrupted him saying that they say the same thing about herbal options and acupuncture, he agreed very much and said that it’s something that can’t hurt you for trying it and that it does seem to bring relief to some, so it’s worth a shot to see if you’re one of the people it will help. He also agreed that herbal remedies might be helpful but that he sadly didn’t know much about them himself; however, he didn’t discourage me from trying and was open to the possibility that it could help. So if I try anything and find it helpful, I’ll bring it up to him in the future and see if he’ll hold on to that. I just hope he also takes any patients who are BIPOC as seriously as he did me, a white patient, if they bring it up as an option.

We also briefly discussed acupuncture, massage therapy, and chiropractics as treatment options, but those are all unfortunately not covered by my insurance. :\ [disappointed face] I’m hoping one day that will change, but in the meantime, it’s nice to know that it’s doctor-encouraged and not dismissed. If I ever get the money, massage therapy is high on my list since I know from experience that it helps me tremendously in ways pain killers do not.

I had mentioned corticosteroid injections as an option, and he explained to me that while it helps for an acute injury, for chronic pain such as mine, it could actually worsen things over time. I had a suspicion about that because I use an inhaler that has corticosteroids and had heard similar things, so I had been surprised when I saw it as a suggestion online for chronic pain in fibromyalgia. He said that if I get an acute injury, he’d consider it, but for something like this, he was afraid of putting me in more pain down the road. I wholeheartedly agreed and decided against the injections. It also made me think about all the doctors who have been insisting I try them for other issues such as my bone spurs in my heels. I had always been reluctant to try it, and now I’m really glad I waited for better informed folks on the issue who also didn’t have an investment in the hyper use of it as a treatment (hello, local podiatrist).

Speaking of chronic issues, he explained to me about my adhesive capsulitis (again, a condition my rheumy diagnosed me with and refused to tell me anything about) and said that it’s not, as I had suspected, something caused by my injury doing the self defense practice but simply a chronic condition that had likely been building up for years. He said that the good news is that it wasn’t an acute issue like a rotator cuff tear-- I laughed at it being called “good” news, but I got what he meant. It was also kind of nice to not have a doctor try to describe chronic pain as always worse than acute pain. I’m hoping that this is a sign of a healthy attitude of accepting chronic illness as another normal way of being human and not a sign of dismissing the debilitating nature of long term pain, but I really didn’t get a negative vibe from him like that at our appointment. Overall, he just acted as though this was all very normal from a medical standpoint and not something of a moral failing on my part as the patient.

He asked if I had ever been in physical or occupational therapy (PT/OT), and I told him about my three failed attempts to try for my back pain and carpal tunnel, mentioning that after the initial few appointments, it just became so stressful and overwhelming to go several times a week, spending hours at the appointments/rides to and fro, spending hours scheduling my rides and appointments, etc., that my days quickly became subsumed by treating my health and I had no energy or ability to pursue anything else at home. It seemed clear to him immediately that this was an issue, and I didn’t even need to explain that I needed more from my life than just exercising, scheduling medical appointments, and resting from those two things, and I was so damn glad I didn’t have to. He immediately just nodded his head and continued to discuss our other options.

It was a holy shit moment because, as a fat person especially, I always get treated as though if I don’t pursue every opportunity to “heal” the way the doctor feels I should, I’m deserving of and trying to be unwell and in pain. So to not be forced to explain myself, to be allowed to have desires in life for things other than exercise and therapies that only others (and not me) felt would help me was fucking amazing. A little confusing at first, but then it felt completely normal, which is how it should fucking feel. We deserve, as disabled people, to choose how we want to treat or not treat our conditions without being shamed for it or coerced into doing differently for someone else’s conception of what is healthy for us as individuals.

I also asked him about low impact exercises, and he told me basically what I already knew: using an elliptical, swimming, walking, and so on are all good, so I said I would just do my best to continue with that.

At the end, I also asked him about how to proceed with other issues, saying, “I’ve been seeing a lot of doctors the last couple of years, and I would like to stop.“ lol I explained that I had been through so many tests, kind of expecting that fibro might be a possibility and doing those tests to eliminate other conditions just to be sure, including with a gastroenterologist who ruled out IBS, Crohn’s, Celiac, parasites, etc., despite ongoing gastro issues. I explained that I was still going to check about the possibility of dysautonomia, which he encouraged me to look into to be sure, suggesting a neurologist would be best for that, and I explained that I wanted to basically just get confirmation that most, if not all, of my symptoms were attributed to fibro or were common issues with fibro, and I can finally stop looking and go home to rest and heal and pursue my life secure in the knowledge that this is my diagnosis. He said, “Yes.”

...

Y’all, I almost cried. ❤ [heart] I was so grateful. I’m tearing up just typing this. lol He said that since I’ve been worked up in so many ways and tests and have been able to rule out so much, that it’s pretty conclusive that fibro is the likely culprit for all my symptoms. We talked about the fact that fibro doesn’t cause things like IBS/IBD, migraines, etc., but that they’re often simply comorbidities and that I just have them now. I was so, so grateful to finally hear the words I’ve been needing for so long, the words I was looking for after 5 years of searching for an answer to this shit I was going through. I have a name for it. It’s real. There’s no cure, but I can try to treat it by doing all the things I’ve known all along would help. I don’t have to continue this hellish cycle of going into the doctor’s office so often that they know my name and face when I walk in the door and know my voice over the phone without even my name. God, I can’t wait to be unknown or barely remembered at all these doctors’ offices. It’s gonna be fucking glorious.

And let’s just take another moment to compare Dr. Michalisin with Dr. Mehta, shall we? In this instance, instead of shaming me for needing answers when I expressed confusion about my other non-fibro-caused symptoms or accusing me of seeking to be ill like Dr. Mehta did, Dr. Michalisin understood that I needed to simply hear answers and explanations about my condition and that I needed confirmation that I could stop looking for shit wrong with me because this is it. A conclusive diagnosis. Fucking thank you. What a beautiful thing to know.

We finally wrapped up the incredibly human-feeling appointment with a prescription for a muscle relaxant called cyclobenzaprine (commonly called Flexeril) at 5 mg, a prescription for lidocaine-prilocaine 2.5-2.5 % cream (commonly called Emla), and a referral for Dr. Daniel Hanono to discuss medical marijuana for my pain. He told me that if the relaxant helps, I don’t need to really come back, but that I was always welcome to come back, call him, or message him if it didn’t help or if something changed or something new popped up and we could try dose adjustments or something new. We exchanged pleasantries and parted ways, me feeling human in ways that I’m usually denied at doctor appointments, empowered by my pain treatment options, and hopeful that I could finally get even a minute amount of relief from my constant symptoms.

It felt so, so, sooooo fucking good to tell the receptionist no when they asked me if I needed a followup and even better to go, practically skipping, to CVS for my prescriptions which were all covered by my insurance and therefore costing less than five bucks out of pocket. It was like fucking Christmas in my house, I swear, that’s the most I’ve probably smiled since I got approved for my hysterectomy. lol What joy it was to have and what joy it was to feel joy again after so long!! ♡ ❤ ♡ ♡ ❤ ♡ ♡ ❤ ♡ [9 black and white hearts]

I’m so grateful to have been able to get this care. I’m so privileged and lucky to have been able to do so. Everyone deserves this in their lives. And if you haven’t been given this kind of treatment or been allowed to be and feel human, you deserve to be given that. You deserve kindness and respect and belief in your symptoms and difficulties and accessibility needs. You deserve pain treatment. You deserve care, quality and humane care. You deserve help and answers. My love and strength to you in the face of anyone who dares deny them to you. ❤ [heart]

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Adhesive Capsulitis

Ugh, another diagnosis. Fucking fantastic. Apparently this is the “12 Days of Diagnoses” in my house. -__- [aggravated face]

Got this one diagnosed after pressuring my rheumatologist into getting me some imaging done. I asked her for an MRI first to avoid radiation since I get a lot of testing done, and she ordered an X-Ray (of course). Came back showing I had type II acromion morphology, and she basically told me to wait and see how it goes until our next appointment-- three months away. I again pressured her into giving me an MRI because I knew something was wrong after it being so painful and worsening over the last month and a half, so I was angry with her resisting even imaging. Glad I forced her into it because sure enough, it came back showing I have adhesive capsulitis, also know as Frozen Shoulder, in both arms, worse in the left where most of my pain is. But despite me being right twice about this, she refuses to order imaging for other joints I have pain in that’s been going on longer than my damn shoulder. Fucking ugh..!

I’m so tired of getting more things diagnosed wrong with me. I’m so tired of my body fucking hating me. I’m so tired of doctor appointments and testing. I’m so tired of doctors judging me for one reason or another, thinking me an uncooperative patient when really all I am is someone who was forced into this life and instead just wants to go home and focus on their artwork and have a decent, fairly content life with lots of friends, loved ones, plants, good food, and fuzzy pets to cuddle and play with. That’s all I’ve ever wanted in life, and it seems that I’m asking too much, according to my body and according to doctors who feel I need to drop everything in my life to focus on meeting their goals for my life.

I get what they’re trying to do, but I gotta live my life, not them, and I need things in it that make it worth living, and focusing all day every day on “health” is not it. I can only do what I can, no more.

Also, I’m mad because I got this from an injury I got from taking a self defense class which I took because I got abducted briefly and attacked by a driver through the Medicaid service who I needed to use because I have a lot of doctor appointments because I have so many health issues, and I knew it was a risk to take the class, but I knew I also needed to be able to protect myself, so I gave it a try anyway, and this shit happened. I wasn’t even doing anything extraordinary-- I got lightly tapped in the shoulder a few times and then felt pain that was clearly not equal to the pressure from the tap. I should have listened to my body a little more. Lesson fucking learned-- I hope.

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Fuckin’ Fibro

Recently diagnosed with fibro and CFS/ME. Mad about it. Gonna blog about it sometimes. Share some resources when I can sometimes. Maybe some other stuff, too, we’ll see.