I hate how my #chronicillness symptom management relies on niche supplements that only have one suitable manufacturer which I am just now learning goes through phases of poor production management  I ordered a refill nearly 2 weeks ago and it's still processing, not even shipped yet

I ordered some random dupe off Amazon, we'll see if it helps or wrecks my system lol. They're like a third of the price of the name brand, so I'm either in for a huge bargain or a painful scam lol

For those curious, my illness is #interstitialcystitis (I'm making that hashtag happen if it doesn't exist yet), and I take Aloe Vera supplements to reduce pain and inflammation. Without it my symptoms flare right back up.

Improvement in chronic pelvic pain, orthostatic intolerance and interstitial cystitis symptoms after treatment of pelvic vein insufficiency - Steven J Smith, Michael J Sichlau, B Holly Smith, Dacre RT Knight, Brenda Chen, Peter C Rowe, 2023
#POTS #InterstitialCystitis #PelvicPain #OrthostaticIntolerance

https://journals.sagepub.com/eprint/WE5DIH9IRUPSPG4FI5KC/full

One great thing about not being in a relationship and not having sex for over a year is not having a UTI in over a year 💫

This really is something to celebrate for me, sadly. Cheers!

#PainfulBladderSyndrome #InterstitialCystitis #PelvicPain

New from the US:
"Small Fibre Polyneuropathy As a Therapeutic Target for Patients with #InterstitialCystitis/#BladderPainSyndrome"

Free:
https://www.auajournals.org/doi/abs/10.1097/JU.0000000000003229.02

"SFPN is common in patients with IC/BPS & is significantly associated with concomitant diagnoses of #chronicfatiguesyndrome & diabetes mellitus"

#MyalgicEncephalomyelitis #MEcfs #CFS #MyalgicE #PwME #MEeps

This pandemic is getting so lonely as everyone returns to normal and I'm googling outcomes of covid infection in people with #bipolar disorder and #InterstitialCystitis to remind myself to keep on. Cliffs notes for both conditions: worse than the average bear.

#mask

@WestCoastChelle My #chronicpain comes from #InterstitialCystitis. I’ve had it for 31 years. You and I both know how debilitating constant pain is. It’s hard when you’re trying to live and pain is making it next to impossible.
@bear_lab apparently I’m the only one on here with #InterstitialCystitis :(
Having a bad flare up day and I haven’t even eaten anything that’s a known trigger that I can think of. I guess I was sitting too long yesterday playing ps5? Idk. So annoying. I hate pain #IBS #InterstitialCystitis
It’s hard to get a script for opioids & when you do, you have to worry about insurance & the pharmacy dictating over doctors’ literal orders. No one deserves this torture. I have #IntractablePain from #hEDS, #DegenerativeDiscDisease, #RhumatoidArthritis #osteoarthritis #InterstitialCystitis, #PCOS, #endometriosis & still finding more things. I can’t even get a script for tramodol, which was very effective for me in the past…& technically isn’t an opioid. I’m only offered non FDA (4

My #introduction post: I'm #Autistic & was diagnosed with "hyperactivity" before #ADHD existed in the DSM. I self-diagnosed in my 20s, back in the early 2000s, but only got an official diagnosis (privately, as the NHS in my area was useless for AFAB adults) in January 2020. In addition, I'm #dyspraxic and #dyscalculic too.

I'm #disabled and #ChronicallyIll - my main diagnoses are #PoTs , #CentralSleepApnea , #Endometriosis , #InterstitialCystitis and #HidradenitisSuppurativa (among others).

As well as being #ActuallyAutistic , I'm an #atheist , a #humanist and #demisexual , #bisexual and #nonbinary .

I love the #Marvel character #TheWinterSoldier and the actor Sebastian Stan, #Rats , #knitting , #crochet , #tunisiancrochet, #writing and anything #medicine or #scientific . #Learning is definitely a #spin (and clearly I love hashtags too 😂).

If I say something that seems off, please just ask me to clarify. I always try to say exactly what I mean, but that doesn't always translate in reality.