life in my body

30 • spoonie • chronic pain • tgct/pvns • herniated discs • spinal stenosis • pcos • anxiety

[lifeinmybody]

i really can’t believe how i’m feeling now compared to a few weeks ago. sure, i’m in a ton of post-surgical pain, considering i’m only 3 days out from surgery, but a year’s worth of chronic pain in my hip is magically gone overnight. this incision in my thigh is nothing compared to what that pain felt like. and it makes sense, since the tumor they pulled out was around 4 inches by 2 inches. that’s larger than two golf balls! they thought it was far smaller from the scan, but when they started pulling it out.. it just kept coming. (my surgeon called it a “clown car” tumor.) the doctor thinks i have tgct/pvns, which was the original diagnosis, except the final scan and surgery determined that mine is localized, not diffuse, which has a much lower recurrence rate - and it could actually mean that my surgery is curative!

i’m still incredibly incapacitated due to the nerve block and nerve pain pump keeping my leg pretty much useless, but i can do small movements now and i’m able to walk relatively effectively with the walker. all that being said though, i’d take this over the previous pain any day. it also helps knowing that this is temporary. i’m in surprisingly good spirits, all things considered. i’m holding onto hope and looking toward a brighter future, one in which my quality of life is worlds better than it is now!

[lifeinmybody]

what a whirlwind.. i finally saw the orthopedic oncologist this week. he actually let me know that he thinks my diagnosis is synovial chondromatosis, not pvns. it’s the same, in that it’s a benign (non-cancerous), locally aggressive tumor in my left hip. essentially the fluid in my hip is turning into all these hard “pellets” that’s rubbing up on the joint and causing the chronic pain. the treatment is an open hip surgery; this is not curative.. i’ll need to get an mri and have an appointment every 6 months.. forever. but at least this may be a door to decreased or eliminated pain for the time being.

i had the option to schedule the surgery at the appointment.. and i went for it. i’ve been in a pain for a whole damn year. i’m not waiting another second. this timing works out well for my life, too. i’ll essentially be down for 2-4 weeks, then i can steadily get back to normal life. the total recovery is 6 months to "normal” - whatever that is! by that point, it will have been one year since the mri revealing the tumor and a year and a half since the chronic pain started. it’s hard to hope for relief of pain, but i’m still holding that hope close.

i refused to put off my life anymore during all of this. even though it felt a bit scary and overwhelming to do so, i signed up for the painting class i’ve been eyeing at the local community college. with how bad my brain fog has been due to pain, my normal creative outlet of writing hasn’t been as assessable to me. art has become my saving grace. i am so excited to do this class and have a formal outlet to channel myself through this healing journey. i think that this surgery is the beginning of some beautiful things for me.

[lifeinmybody]

i keep thinking “i knew it, i knew it, i knew it” - i knew that it wasn’t referred pain, i knew that it was something specific that was wrong. and yet, if I hadn’t pushed, i never would have gotten those mris and have a real diagnosis. and even now, i have to hunt for specialists on my own. the doc who ordered the mri told me the name of the diagnosis and to see an ortho... and that’s not even the right specialist. trying to process out this anger and disappointment so I can move through and heal.

[lifeinmybody]

hunting for an orthopedic oncologist.. definitely not how i expected all of this to go, but at least i have a direction and some clarity. now i need to find a physician i trust, who also has specialization in pvns *and* hips.

i feel sad, tired, and mentally drained. i can’t fathom going back to work on monday, but i also know that routine and distraction will be good for me. and at least on monday i can start making calls to schedule appts with at least 2 different doctors to get a range of opinions, and talk to hr about short-term disability, fmla, etc.

on top of this, i am scared to hope.. scared to hope that this surgery, albeit painful, could mean that i could be free from my chronic pain. that feels like the most painful part of all.. the pain of hoping. and yes, hope is so powerful.

[lifeinmybody]

my mri from 2 weeks ago led to a more focused mri this week, to clarify what that nodule in my left hip (my problem hip) was.. and turns out, it’s a tumor called pvns (pigmented villonodular synovitis). it’s a noncancerous tumor and, of course, an extremely rare genetic condition. these tumors grow on joints causing severe pain, decreased mobility, etc.

i feel half thankful to know and ready to tackle this and half ran-over-by-a-truck.. i haven’t quite wrapped my head around the fact that i am likely going to need surgery asap. i’m also feeling a bit overwhelmed by the “rare” aspect of this, knowing most surgeons aren’t going to have any experience with this. i did find one specialist in the area, out of a cancer center (which has its own layer of emotional heaviness to it), but i’m not sure if he’s in-network with my insurance, taking new patients, etc. i did, at least, send him an email (from my work email, to leverage my job a bit, as i work in healthcare). this also means surgery during covid, which is another layer of scary.

in the meantime, i scheduled an appt with a hip specialist in my ortho practice (because every 30-something has multiple ortho doctors.. right?) to try and get the ball rolling on a treatment plan for this. working on getting my ducks in a row with fmla, disability, etc. and also let my boss know “oh hey your newest employee will need surgery and be out for 1-2 months in the coming weeks”.. argh! i’ll try to get an appt with that specialist asap, but can’t call until monday.. i was too emotionally wiped out today and in too much pain today to call, and by the time i had it together, it was after business hours.

which, brings me to another little thing.. i most definitely can’t drink anymore. i had wine last night, drinking for the first time in 6 months, and i absolutely can’t do it anymore. my pain was through the roof today and that’s the only possible contributor. i haven’t done much with elimination “diets” for triggers, but seems like it may be time, since i am noticing how incredibly reactive my body is now.

oh, and one more thing.. i am so freakin pissed at the level of self-advocacy required to dig into medical issues, particularly for women-presenting humans and young adults. and i know that if i were a poc, particularly if i were black, this would be a billion times worse. i went from doctor to doctor, all completely on my own (no one ever referred me out after giving me no answers) and it ended up with a bunch of expensive and unnecessary procedures because it was my “only option” - and turns out, they were treating the wrong thing, since this is almost certainly the cause of the pain. i separately have disc issues and spinal stenosis and they were convinced that was the cause.. yet the pain was in my hips and despite having back pain flares my whole life and explaining this, they presumed it was referred pain. i was the one who pushed for more testing, and i was the one who said no to another invasive procedure before i got more scans done. if i had listened to them, i’d have had spinal surgery and woken up and recovered.. to this pain continuing in my hip. what a fucking failure our medical system is (a lot of the time), truly. it’s heartbreaking.

[lifeinmybody]

the hip mri from last night ruled out ankylosing spondylitis, but revealed a “synovial nodule” on my left hip, aka my problem hip. the doctor gave no context to what this means, so of course i’m spiraling. from a quick search, it appears that it could be a non-cancerous tumor called synovial chrondromatosis, which would be a secondary diagnosis to my (confirmed) osteoarthritis. my pain started in my left hip and continues at its worst in my left hip, but i assumed that’s because i have bertolotti’s syndrome in that hip. maybe it’s more though? now i have to get another mri done just of my left hip, with and without contrast. (never done one with contrast before.) i’ll be scheduling that asap, as well as a follow-up with my ortho doc. this is so scary and exhausting.

[lifeinmybody]

i had my 2nd mri tonight. the first was back in march, about 4 months ago, which is what revealed the herniated discs and spinal stenosis. i had already gotten the x-ray at that point and diagnosis of bertolotti's syndrome in my left hip, which explained a bit of why my left hip was continually the one in more pain. this is what prompted being sent to the pain specialist for management, by the ortho who reviewed the results and told me “well, you’ll need spinal fusion surgery before the age of 40 and ‘when’ will be decided based on how long you can tolerate the pain.” i felt so hopeless in that moment.

the pain doctor gave me some more hope as we flushed out treatment options, but she’s the one who dropped the bomb that my results also showed spinal bone spurs and arthritis in my hips and spine. i had no idea, and she assumed the ortho had told me when he read the results with me. sadly, the first line of treatment she attempted, the radiofrequency ablation (i.e. nerve burning) was not successful, so i went through three rounds of needles in my back while awake (which is even more painful than it sounds) for nothing. her next line is the epidurals, but i was only a month out from the burning and i couldn’t fathom getting on the table to let them put more needles in me.

i also didn’t feel entirely convinced we’d flushed out my arthritis diagnosis, so i made an appointment with a rheumatologist. nothing came of that, but she did write me the order for the mri i got today, in order to determine if i actually have ankylosing spondylitis (or bechterew disease). this is a rare diagnosis, but it’s usually the one associated with hip and spine pain. i’m not sure how i would feel if this is the case.. if i were to have it, i would at least have medications known to help and a clear treatment plan, as opposed to where i’m at now, which is essentially that osteo is crappy and degenerative. either way, it feels like a “you can do some lifestyle things to help, but otherwise this is your life is now” diagnosis.

the one good thing is that, after the failed burning, i managed to advocate for myself and get them to start me on gabapentin. they hadn’t tried any meds yet for pain management. i’ve always struggled with taking medications, with how i was socialized by my parents, but i really needed to try something else. i knew that gabapentin also worked for anxiety, and since i can’t take any traditional meds for anxiety, i was hopeful this would treat both.. and it did! i’ve never felt as calm and centered as i do since i started gabapentin. i didn’t realize life could be like this with regard to my anxiety, and it’s such an immense relief. i noticed when i was in the mri today, because i was a million times less anxious than the first time. i actually even dozed off a bit, which floored me. so.. silver linings.

i’m pooped. i’m going to go to bed soon, after i finish an email to the coach i’m working with.. she’s a physical therapist i used to work with who started a coaching business and i helped her once with a really hard personal experience, so she’s offering me her services for free. i feel so lucky to have some extra guidance along the way- a sounding board to process everything i’m experiencing with adjusting to my health stuff, and one who really understands how joints and pain work, at that! she also seems to really meet me where i’m at without any fatphobic bs or pressuring into dietland; she’s actually letting me own the plan. subtle good things, like this, go a long way these days.

[lifeinmybody]

today i cried because i couldn’t use chopsticks. that’s not me - i’m not a crier, and i’m damn good at using chopsticks. but my hands wouldn’t grip them, and it was this glaring reminder that my body isn’t working the way i needed it to, the way it used to.

i’ve been having generally good days lately. a “good day” these days looks different than it used to - a good day a year ago meant no pain, no limits; a good day now is one where i’m mostly able to do things i enjoy and need to, albeit accommodated, and my pain is at a somewhat manageable level.. i.e. staying under a 6/10 with limited no sharp/shooting pain (only the constant, throbbing pain that i’m used to). there aren’t pain-free days anymore. i don’t remember when exactly that started, when things crossed over from the pain being intermittent to the pain being constant, but one morning, sometime in march or april, i woke up and a “pain flare” just.. never went away.

this past weekend - with my weekends being fridays through sundays - had more bad days than good. i couldn’t figure out why, but i woke up saturday morning in significant pain, the kind i hadn’t felt in a few weeks. i didn’t do anything differently.. i didn’t overdraft my spoons the day before or overexert.. so i was frustrated beyond reason that i woke up feeling this way (especially when i’d had acupuncture the day before, which usually helps).

out of the blue today, i realized the only difference was that i hadn’t used hemp oil before bed on friday or saturday nights. i was naturally tired friday night and having a good pain day, and on saturday i had stayed up late and was too tired and hurting too much to get up to take it before i passed out. in my brain, i was only using the hemp oil to manage the pain so i could sleep - i didn’t think it was making any difference during the daytime, and it’s expensive, so i was rationing it out.. but that had to be the culprit. frankly, it’s a relief to realize - with my meds and current pain plan (which is more a work-in-progress than a plan), i feel like i never get any relief. to know something may be working.. that feels huge.

hopefully taking it tonight and getting in a routine of taking it nightly will make a difference moving forward. i set a reminder in my cell (my memory is shit these days). i need something to work.. something, anything. i just need a little bit of ownership back over my life. all i want is to have enough energy and ability each day to get through it and feel that my day was quality. i’ll get into all that in a future post - this is enough for now. my hands are stiff, and my body and mind are tired.