spondylitis

Trigger Warning!!

I lost all my friends bar one when I became psychotic and manic in 2007 and again in 2008. It was a sudden thing that happened in 2007 and the trauma of it caused the onset of my bipolar and the unblocking of memories from my early childhood. My CPN said I disassociated with it all. Although I had some memories that have always been with me. Although these memories were so weird and unfathomable. Once I had the awful reminders, I finally understood what all the other memories meant!
Last year my last remaining friend took offence to me calling her out for not showing up without any kind of contact to let me know! She had no good reason . Even if she did have a reason she could of just kept me in the loop! I was so surprised she has ‘unfriended’ me, so’s to speak. I can’t even call her. I’m blocked! Perhaps it was just an excuse. That’s what she really wanted! We’ve been friends for over 35 years! I miss her!
On the 29th December 2021 my bf ended our 11+ year relationship. He said he loved me on Christmas Day and then a few days later he dumped me … by text message! We weren’t arguing. Just had a small disagreement. Totally minor. He has said it wasn’t that! We had always got on so well! It still doesn’t make sense!
So now I’m going it alone! Not quite alone as I have my son. He’s also my carer as I have several physical disabilities and disorders.
I do have a lot of online friends from the art groups I’m in. Just would like to meet up with them. I would like a friend in the real world suppose.
This year I’ve had and I’m still having several health scares. First my right forearm has rather large lumps .. going the full length of my forearm on one of the lumps. I also have oral problems and have had to have biopsies and scans done. I’m now being checked for ovarian cancer. To top it off nicely, my right shoulder has become so painful I can’t function. I’m being investigated to see what the problem is. Because my right shoulder is in such a state I’m unable to draw for any period of time. It’s just too painful.
I feel like I’m being robbed of everything that gives me joy. I feel so miserable! #colouredpencilartist #wildlifeartist #Disabled #Bipolar #sexualabusesurviver #depressed #Mania #Psychosis #MentalHealth #GiantCellArteritis #AutoimmuneDisease #Osteoporosis #spondylitis #Fibromyalgia #PTSD #Flashbacks #AterialvenousMalformation
#MentalHealth #physicalhealth

Hello, just wondering if neuro symptoms are typical in female psoriatic spondylitis. That seems to be at the root (pun intended) to a lot of my pain & muscle spasms. Just wondering if this is likely w non-radiographic #spondylitis or #PsoriaticArthritis ? Awaiting official diagnosis pending MRI & neuro consult booked for end of June. Trying not to think the worst (neuro damage, other diseases) right now.

Well, another great topic, but turning my what is into what is, IS exactly the path I've been trying to work on. I feel that I can make my way down this path, but I must be honest in saying, I've been working on this subject for years. I have many health issues, PTSD, is probably the biggest to deal with bbecause it comes up in almost every aspect of my life. I also have chronic pain, for 20+ yrs now & currently at it's worse ever. I went through extensive daily therapy over 28 yrs ago after losing my oldest son, who was only 13 yrs old. Fast forward to the loss of my 2nd son in 2007. I again had extensive therapy, in-patient. I've learned how to cope with this & while working & functioning as productive, until both 'sudden' losses of each. So, in many ways I know I must put 'me' first, before I can be productive. Yet, here I am again, 13 yrs after the loss of my second son, who was 27 at the time. I've been diagnosed with multiple health issues, & they keep knocking me down with each & I must struggle to deal with these as I'm diagnosed, because that's what I was taught to do. Here are some, 2 total knee replacements, 10 yrs apart, #spondylitis , COPD, sleep apnea, use of c-pap, #Anxiety , #MajorDepressiveDisorder #Osteoporosis #Osteoarthritis . So I would call that a full plate in itself. Now, I'm facing a bone fusion in my back, lower lumbar, & possible hip surgery, not clear if in joints, waiting results, I also have a tear from each hip to the sacrolyic joint in back, which complicates the back surgery. The day I was to have my back surgery, it was found that i had a DVT, blood clot in my leg, halting surgery. About 3+ weeks ago, I was diagnosed with chronic myeloid leukemia. I also have spinal cord damage, swelling around that & both legs, making it almost impossible to walk, let alone bend or do much of anything. I cannot sleep more than 2-3 hrs each night, & rarely take naps, because of not being able to get comfortable. No position works for me. I can fall asleep, but not stay asleep. I am taking many meds. My pain level is an 8 out of 10, only for 3-4 hrs after taking my pain meds. At it's worse is a 10. I have other chronic issues #Fibromyalgia , but after 25+ yrs, fails in comparison to the other issues, but still painful. This all brings me back to the #whatifstowhatis . I try extremely hard every day to stay as positive as possible, & try to deal with ALL. I've found it extremely challenging & exhausting. So with the help of a local group, NKY SEL, (Social Emotional learning) & "The Mighty", just recently, are my biggest support systems. My family knows of all this, but quite honestly, I have a good handful, maybe more, of friends who are more supportive. So in trying to deal with one issue at a time is quite difficult, but currently I am working on the pain which now leaves me to a sedative life style, along with the daily PTSD creeping back in motto mention my anxiety & some aspects of depression. Daily goals are a priority now. I star

I would love to hear from you if you have and any tips you may have for dealing with it! Thanks!!☺️

My rheumatologist is treating me as if I have RA & ankylosing spondylitis (methotrexate and Simponi Aria infusions), but didn’t want to formally diagnose me with either because I’m seronegative.

#ChronicIllness #ChronicPain #Seronegativespondyloarthropathy #spondylitis #spondyloarthropathy #AnkylosingSpondylitis #SeronegativeRA #Pain #Advice #Spoonie #seronegative #Methotrexate #BackPain #simponiaria #Biologics

Have you ever experienced medical gaslighting? My guess is probably so.

It happens when you're experiencing serious symptoms, and you know something is wrong, but your doctor explains away your symptoms with something along the lines of:

"You're too young to be this sick."
"It's just anxiety/depression."
"It's just stress."
"Maybe you're just obsessing about your symptoms too much."
"Chronic pain is a normal part of being female [or any specific gender identity, race, ethnicity, age, sexual orientation, weight, etc.]."
"You just have a low pain tolerance."
"There's no need to run any imaging or lab work, I already know your results would come back normal."
"You seem perfectly healthy to me."

When patients are repeatedly told that their symptoms are no big deal, that prevents them from finding a diagnosis, as well as the treatment, symptom management strategies, and community that come along with having a diagnosis. They can't target their dietary and lifestyle modifications to their specific disease. Patients need to know exactly what they're up against in order to start healing.

Medical gaslighting not only prevents patients from getting the medical care they need, it also makes them question their own perception of reality. It makes them wonder, "Am I making this up? Am I delusional?" Patients start to feel isolated and unworthy of any help or accommodation. If they don't already struggle with their mental health, they will likely begin to see their mental health decline at this point.

So what are the red flags of medical gaslighting to watch for? Here are some of the big patterns I've noticed with doctors:

~ The word JUST. Any time your serious symptoms are JUST anything: stress, anxiety, low pain tolerance… That sets off alarm bells for me. That word indicates that the doctor is minimizing symptoms.

~ Blaming your symptoms on a mental illness without actually screening for that illness or providing a referral to a psychiatrist or a therapist. If your doctor believes your symptoms are related to a mental illness, they should always connect you to providers who can help.

~ Dismissing your symptoms or assuming a specific diagnosis based solely on your sex, race, ethnicity, gender identity, age, sexuality, weight, or any aspect of your appearance. Some disabilities and illnesses do affect certain demographics more often than others, but doctors should never make any assumptions about your illness based on these factors alone.

~ Refusing to order any imaging or lab work without explaining why.

~ Not listening to you or not giving you a chance to ask questions. That's the provider's first and most important duty.

Please share your own experiences with medical gaslighting in the comments below or get in touch on Instagram @autoimmuneabbey to chat more.

#autoimmune #ChronicIllness  #InvisibleIllnesses   #ChronicPain  #ChronicMigraines   #spondylitis  #Ableism  #Spoonies   #SpoonieProblems #Gaslighting #MedicalPtsd

A couple of weeks ago I sat down to lunch with one of my dearest friends and told her that I had finally been diagnosed with undifferentiated spondylitis, a rare autoimmune disease that explained my snowballing issues with joint pain, back pain, gastrointestinal pain/dysfunction, and food intolerance.

She was trying to make sense of this new information, and she wondered aloud if all of this might have been triggered by some sort of stress or trauma.

I bristled immediately at the words stress and trauma, and before she had even finished her thought I launched into a fiery monologue about how my autoimmune disease is not my fault, and it's not 'just stress'. I pointed out that everyone experiences stress and trauma, but not everyone becomes disabled as a result of the experience.

My friend is a saint, so she apologized calmly then pointed out that I had reacted that way to those words before. "It seems like that might be a trigger for you," she said gently. I teared up a bit because she was right. It's something I've been talking to my therapist about for months.

The truth is that I wrestle with my stress and trauma every single day. But I don't feel safe to admit it openly because the word 'stress' has consistently been used by doctors as an excuse to deny chronically ill folks treatment and testing. I've heard it over and over again: "Maybe you're just stressed. Maybe you should just try not to worry about it so much." It's a dismissal, and the implication is that the symptoms must be psychosomatic. Stress has essentially become a code-word for hysteria in the medical world.

It's not that I don't believe stress contributes to chronic illness. I do, and that's why I go to talk therapy every week to work through the emotional fallout of my declining health. But the problem is that for me, the biggest source of that stress and trauma in my life is the illness itself. I would argue that it's circular logic to blame my illness on stress about my illness. My illness struck me down right in the middle one of the happiest years of my life, how could that be explained by stress?

I'm glad I kept advocating for myself and eventually found a diagnosis, but I'm left wondering how much less stress and anxiety I would be wrestling with now, after my diagnosis, if I had been offered imaging and blood work for my symptoms a long time ago instead of just antidepressants.

#ButYouDontLookSick #InvisibleDisability #ChronicIllness #ChronicPain #spondylitis #RareDiseases #Spoonie

One of the things that's been hardest for me since becoming chronically ill is coping with the relentless guilt, that quiet voice in the back of my mind that says it's my fault I'm sick.

That voice didn't come from nowhere. It came from doctors who downplayed my symptoms when I begged them to help me figure out why my body was failing me. It came from the unhelpful comments of well-intended healthy folks around me saying "have you tried Whole 30, essential oils, meditation?" instead of offering their support and validation. It came from a man in the break room at work who interrupted my heart-to-heart with another chronically ill person to ask me if my symptoms might possibly be due to stress rather than an autoimmune disease. These little moments slowly crushed me and almost kept me from persisting in my journey to find answers. Thank goodness I found other spoonies out there who validated my experience and pushed me onward towards my eventual diagnoses and a better medical team.

Spoiler alert: Chronic illness is complicated, there's rarely any easy explaination for why some of us win the worst kind of genetic and environmental lottery and end up with uniquely horrible chronic illness. If there was a magic bullet that could cure us, we would be healed already.

Chronically ill folks don't need a finger-wagging lecture about why we're sick or a laundry-list of things we have to do to get better. We've already heard it all. We don't want to delve into everything we might have done wrong. We already know we could eat cleaner, do more yoga, and work on our stress levels. But you know what? Healing is a long slow process, and we're doing our best.

Instead of unwanted advice, give chronically ill folks your support and empathy. Ask what you can do to help, and be curious about our unique lives with chronic illness. Learn about our conditions, not just from WebMD or Healthline, but from patient blogs, social media, and patient advocacy organizations. Donate to our favorite patient advocacy organizations. Let us know you haven't forgotten us, even though we don't get out as much any more.

Remember that we're more than our diagnoses - We're still regular people who love normal human things, like chocolate, pizza, Dr. Pepper, Chardonnay, and occasionally staying up lat to hang out with our friends and family, flare-ups be damned. It's okay for us to be less than super-human. We promise, we're doing our best. Just love us, believe us, and make sure know you're on our side.

#Migraine #SpoonieProblems #Spoonie #ButYouDontLookSick #spondylitis #Narcolepsy #ChronicIllness #ChronicDailyHeadache

What an absolutely unbelievable year... After six years of surgeries and three over the past year, multiple ER visits and hospital stays....

Something amazing has started to happen... while my body is still healing, more importantly my soul is at rest.

I feel like I have control, like I can breathe and that my future is now brighter than ever...

Thank you to each one of you who has been patient, loving, caring and cheering me on...

It's working, I'm getting there and soon my abilities will only be limited by my imagination ...

Never give up, the alternative is never an answer...

Believe you can

Know you will...

#ChronicIllness #ChronicPain #HealthCare #healthyliving #PCOS #spondylitis #spinaltrauma #DegenerativeDiscDisease #Health #WomensHealth #HealthCare #Diabetes #advocate