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Lupus #Flares #Antibiotic

I'm taking Antibiotic for 7 days. Coz of some infections in my feet. Now I am having fever. I also have kidney issues. Tbh, my doctor said I can still work. For the past year I've been on and off from work. My insurance got denied. Lupus sucks. How do you cope up with flares up easily? It's affecting as well my income. How you find another job that would work on your needs ? Never thought I'm gonna have this kind of autoimmune #Lupus #Kidney #ChronicPain #Fibromyalgia #Grief #Anxiety #MentalHealth #Pelvicpain #Lupus #Insomnia #RaynaudsPhenomenon #Fever

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Why those who identify as women so often dismissed by the medical profession?

Horribly sad that this is such a universal experience. And I'm sure one that all those identifying as women can associate with.

I'm currently living with the consequences of a UTI being entirely dismissed. Now I am in agony every day and sleep in short bursts.

And the NHS wonders why so many are bitter and sue 🙃

Something that also strikes me is that women identifying medical professionals do it as well. The internalised patriarchy is so strong within the global medical profession.

Women's symptoms ignored by GPs - health group - BBC News

#UTI #ChronicDepression #ChronicPain #Endometriosis #Depression #Anxiety #Fibromyalgia #MedicalProfession #NHS #FunctionalNeurologicalDisorder #BrainFog #ChronicFatigue #SinusInfection #PelvicFloorDysfunction #Pelvicpain #Jointpain #IrritableBowelSyndromeIBS #Insomnia

Women's symptoms ignored by GPs - health group - BBC News

Women are often misdiagnosed or have to push for a diagnosis, a women's health coalition says.

Chronic Pelvic Pain #Chronicpelvicpain #Endometriosis #Pelvicpain

I’m 9 weeks post-op from excision surgery of endometriosis and an appendectomy. The chronic pelvic pain has returned. I also have a post-op ovarian cyst that’s just adding to the pain. I’m so tired of living like this. I can’t handle it anymore. I don’t know how to cope with it. I can’t see the pelvic floor physical therapist until late December. What can I do? How can I survive this?

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One Year Opioid Free!!!!!🥳💯🤘💥 #Recovery #ChronicPain

There's so much that I want to say about the last year. But, clearly the main thing on my mind is that I made it with no opioids, my friends!!!!! One whole year with no opioids! I have suffered from some horrible nerve pain, too.  May it have come from severe nerve pain or surgery pain; over and over I did NOT take anything but Tylenol or Ibuprofen. It was a tough year with many nights in tears, calling dear friends to help me cope. I made it through! I had been on high doses of opioids for 15 years, ever since I was diagnosed with #PsoriaticArthritis and then fell down a flight of stairs. I actually fell down a couple flights of stairs during this time and later broke my ankle, then tore a tendon in my ankle. I have been through a lot and I am just waiting to see what will be thrown at me next!!!!! I know that I can conquer 💪 it with lots of love and prayers ❤🙏💖💕!!!!!!

I have to say that the clarity is amazing and the world 🌎 is becoming more and more beautiful everyday ❤! I am loving thinking so clearly, again!
#Anxiety #Depression #ChronicIllness #AnkylosingSpondylitis #Narcolepsy #coping #LivingWithPOTS #PosturalOrthostaticTachycardiaSyndrome #Bipolar1Disorder #PsoriaticArthritis #ChronicPain #Pelvicpain #Migraine #Medication #PudendalNeuralgia #Love #Endometriosis #PolycysticOvarySyndrome #Recovery #Vasculitis #Stress #pelvic Dyssynergia #Lumbarfusion #SpinalStenosis #SpinalFusion #Happiness


When you know something is wrong but no one will listen

I have been in a horrible #InterstitialCystitis flare since mid March. I had a hydrodistension and cystoscope two weeks ago. Then got an infection. I am still having horrible #Pelvicpain and mid flank pain on the left side. I’m hardly eating. I’m dropping weight. They also found a small angiomyolipoma in my kidney but urology says it “was an incidental finding”. I saw my pain management doctor and he is he only one who has listened to me. He was shocked at how I was dismissed by my urology and my gynecologist. He has been so helpful. He also feels like something else is wrong but doesn’t know who. We are trying a pelvic nerve block in two weeks. I know something is wrong but I don’t know what. I have so much pain and other symptoms that are different than a normal flare. I also have #IBS and #Endometriosis and #Fibromyalgia .
I don’t even know what doctor to try to reach out to to try to solve this puzzel.


Weird comforts during flares?

Anyone else have weird things they find comforting during flares? I am in a horrible #InterstitialCystitis flare right now awaiting surgery on Friday. I love watching old horror movies when I’m in flares. I’m taking like 1940s horror movies. I have done this for a long time. I also always buy a new pair of pjs to change into when I get home from surgery. #flare #InterstitialCystitis #Pelvicpain


Question for the Ladies: Pain from internal ultrasound still present 3 days later?

Three days ago I had to have an internal ultrasound to check for structural issues with my uterus and ovaries. My doc determined that I have pelvic floor dysfunction related to my EDS causing a variety of symptoms, esp. frequent pelvic pain. But I am still having intense pain from the ultrasound even after taking my pain meds and using a heating pad. Have any other women experienced this same or a similar problem? How did you deal with it? #WomensHealth #Pain   #PainManagement #PelvicFloorDysfunction   #Pelvicpain #EhlersDanlosSyndrome   #EDSers   #HypermobileTypeEDS   #RareDisease

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Cozy Sunday: Managing comfort with Interstitial Cystitis

Curled up all cozy for ultimate Sunday vibes 🥰

Full disclosure I’m wearing cotton pajama shorts without any underwear to help keep my bladder from flaring. Not the sexiest reason to go commando, but such is life with interstitial cystitis and hey I keep it cute and classy.

For those of you unaware, interstitial cystitis a.k.a painful bladder syndrome is a chronic bladder condition that basically includes all the miserable symptoms of severe urinary tract infection but without the infection.

I developed interstitial cystitis in 2016 after leaving a bladder infection untreated. The infection itself eventually healed on its own, but my bladder never really recovered. I should also mention I got this bladder infection after being raped, so there’s certainly some emotional trauma in there too. And it’s certainly not great being reminded of that every time I’m in a flare. Still working through that, but healing is holistic process.

My bladder is doing pretty okay these days. I’ve gotten decently good at understanding my triggers and sensing if there’s a flare coming on. And often that means preemptively taking some meds, limiting stress, and avoiding tight or restrictive clothing (hence the lack of underwear today).

I also try to stick to an IC friendly diet, especially when my bladder is feeling sensitive. So that usually means no coffee or alcohol and a whole long list of other foods and drinks. Basically l just drink a lot of tea these days which I don’t hate!

For anyone struggling with chronic illness, and IC specifically, and for anyone navigating through healing from sexual assault, know that you are not alone in your pain or in this journey to health.

It’s not always easy, and it’s certainly not simple, but the simple things always make it easier 💞

#InterstitialCystitis #PainfulBladderSyndrome   #ChronicPain   #ChronicIllness   #Pelvicpain   #SexualAssault   #SexualAssaultSurvivors