Hi, my name is bixby7352. I'm here because
#MightyTogether #Anxiety #Depression #BipolarDisorder #BorderlinePersonalityDisorder #Migraine #AutismSpectrumDisorder #ADHD #PTSD #Grief #ComplexRegionalPainSyndrome #DiabetesType2 #TraumaticBrainInjury #ChronicPain #DegenerativeDiscDisease #Scoliosis #Insomnia
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Prices climb, the world moves fast,
More work to do, more bills to last.
Disabled young, back in ‘17,
It meant survival—barely seen.
Not sick enough to waste away,
But pain ensures I cannot stay
At desks or screens for hours on end,
My body breaks, it will not bend.
One income stands, we make it through,
No grand vacations, nothing new.
But in this space where dollars lack,
I hold my health—I won’t give it back.
Some might say it’s luck or grace
To earn a check, to have a place,
Yet what they miss, what they don’t see,
Is how much pain it costs to be me.
So I will save my strongest days
For love that lights and warms my way.
No office walls, no corporate climb,
Just precious moments—yours and mine.
Written by Shanell Huggins #MightyPoets #Migraines #DegenerativeDiscDisease #Fibromyalgia #Depression #Anxiety
12 reactions I confess it's been a couple months since I've checked in. But wow! Where is everyone? I updated my app and posts are still saying they were put up like a year ago! 🤷...Hellloooo???!
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I had toxic megacolon that required emergency open surgery total colectomy w ileostomy. I found out that the j pouch surgeries to reconnect my colon need to be open invasive surgery cutting open a large scar from abdomen to pubic bone from the colectomy. The colectomy and ileostomy was the most painful experience, the surgery was over 12 hrs w complications during and after. I can’t imagine reopening this scar and all the scar tissue around it 3 more times. I’ve had 8 spinal reconstruction surgeries in 10yrs w titanium screws, plates & rods including replacing my tailbone - those surgeries hurt less than the colectomy. Has anyone had j pouch after colectomy? I’m worried about pouchitis and other infections bec I have a primary immunodeficiency disorder? I read ppl have 8-12 bowel movts after surgery? How long does recovery take? Is the pouch connected and working after first surgery? Is life every normal w a pouch?
#CrohnsDisease #DegenerativeDiscDisease #Colectomy #Ileostomy #jpouchsurgery
#Pouchectomy
#colorectalsurgery #Scoliosis #PrimaryImmunodeficiency #InterstitialCystitis #demyelinatonsyndrome #demyelineatingsyndrome
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As some of you may know from my previous post, I am on a medical leave from my retail job due to a herniated disk in my lower back. I also suffer from several chronic illnesses (fibromyalgia, CFS, chronic migraines, endometriosis, interstitial cystitis, degenerative disc disease and numerous allergies and sensitivities) and I had a cervical fusion and a non-cancerous mass removed from my spine a few years ago that left me with nerve damage in certain areas. Due to the back injury my other conditions have spiraled out of control and I’m realizing that I may not have the ability to return to my retail job once my medical leave ends. So I have been researching other kinds of money making options and freelance work keeps popping up. I’ve been looking into Fiverr and Upwork and I’m wondering if any of you have any experience with it that you could share? Trying to figure out if it would be an effective way to earn some income. Any input would be appreciated!
#ME /cfs
#Fibromyalgia
#chronicmigraine
#InterstitialCystitis
#DegenerativeDiscDisease
#Nervedamage
#Endometriosis
#Allergies
#cervicalfusion
#ChronicIllness
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Poppy is my little fluffy sweetheart, and I wanted to share her with you all! She wishes everyone a happy holiday and happy new year. Hope her sweet face helps you get through this tough time of year! #MightyPets
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I have degenerative disc disease, Sciatic nerve, compressed C3 -C7 which causes daily headaches plus my L meniscus tore in half & was completely removed a few years ago. Both wrists had to be fused after a forward fall, went to E.R. & was told "they don't look broken" 2 years later while trying to do p.t. post shoulder repair surgery the wrist pain was so bad , my ortho did xrays which showed both wrists were severely fractured with the bones scrambled so badly, all they could do at the time then, was "salvage" surgery. Since then, it has been one mess up after another post surgeries. I have been in pain management over 14 years, never having had wrong pill counts or bad UA's..then was told quitw frankly I was going to be tapered down to the 90mme which I agreed to as I am the type of patient who let them jab me with steroids, burn my nerves, have caudal injections, you name it,, I did it . Then this summer my "Pain" dr started leaving me hanging, not coming on for my telemed appts,, some times over an hour til some other dr came on,,I was treated with total disrespect as a human disregarding of why I am in pain management altogether. Then the m.a, finally told me "the dr here is no longer prescribing meds over the 90mme forcing me to take taxis an hour north of Anchorage after having flown from a rural town to get there. All they are concerned about is getting me off the meds that were helping me for over 10 years. Now I live in constant withdrawal every 4 hours on top of my pain not being addressed any more. This was NOT me who put me on these meds, and I get lectured at every appointment about them risking going to jail. I really do not care to hear about their worries, when I am the one suffering because of all of this. I am sorry for running on here. I just feel like the medical drs have forgotten their motto of to do no harm. They are hurting me & have hurt me physically by their mistakes SO many times. I yield back
1 reaction Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.
#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #Colectomy
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Hi, my name is sgould. I've been diagnosed with
#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #PTSD #Alpha1AntitrypsinDeficiency #EDS #EhlersDanlosSyndrome #Neutropenia #Dysautonomia #POTS #DegenerativeDiscDisease
I'm a mom of 7 and I love the gospel of Jesus Christ! It's how I survive everyday in this crazy world and where I turn for peace and hope. I'm non-judgemental and I love everyone. I'm open minded and I love gathering "misfits" in my home to share our perfectly crazy chaos and teach unconditional love.
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In 2021, I went to an urgent care, telling them "this is the sickest I have ever been". I was told to get a rapid covid test and return in 3 hours which became 3 days because a doctor never officially read the same result I had in MyChart. Finally get in and am told I have a staph infection and given antibiotics, and told to return in 48 hours if there was no change. There wasn't. I went to the ER and they did a lot of labs. Ultimately sent me home with the admonition to see a hematologist. I happened to have a hematologist appointment 5 days later, but, if I hadn't it's pretty much impossible to get a new patient appointment in a few days' time. By the time that day rolled around, I was incontinent, vomiting, running a 102.0.0.5 fever. I called the doctor's office and asked to speak to the doctor and explained my situation. Because they use a different charting system, this was all news to her. She told me to go to a specific ER where she has privileges. I got there and was thrombocytopenid enough to be transfused with platelets. I was taken on 3 hour ambulance ride to 'the only available bed'. When I got to the new hospital I was gray, except for where I was bleeding around my mouth and eyes. Early the next morning a phlebotomist came to draw my blood with a pile of vials and bottles. Jokingly I asked if they were all for me. I was hungry but was not allowed to eat because I was NPO. About lunchtime I was wheeled to a CT machine for a guided bone marrow biopsy. The only thing they told me is I was pancytopenic (too low platelets, red blood cells and white blood cells), I was given more platelets, meds and antibiotics over the next 7 days and sent home. I still had no idea why this happened. A week later I saw my primary on video. Without discussing a diagnosis she told me to look up myelodysplastic syndrome. I looked it up and it sounded like cancer. I was, after all, on an oncology ward when I was in the hospital. Nobody said I had cancer or MDS nobody really said I had anything specific. I wanted answers and managed to get the bone marrow biopsy report and there was genetic damage in the DNA. My primary referred me to oncology locally. They said it was likely due to toxicity from taking methotrexate for alopecia. I wasn't so sure because I had no methotrexate in my system for 2.0.0.5 months. The life/death cycle of red blood cells is around 90 days but the white and platelets are much shorter so how is this drug affecting me? I don't know and nobody else does. A repeat biopsy 9 months later was clear. My blood recovered over the last 3.0.0.5 years.
Something that has plagued me for 30 years is neuropathy and weakness in my hands. I was tested over and over for diabetes and I did not have it. Somehow the doctors decided, since they had no answers, it was all in my head, and gave me psych meds (!). One doctor ordered a cervical MRI and I had degenerative disc disease that was slightly touching my spinal cord. I was told repeatedly this could not be the cause. I have had emg after emg, x-rays, ct scans, mri's, I'm surprised I don't glow in the dark!! Every neurologist has told me it's diabetic neuropathy. I guess the neuropathy started before the hyperglycemia that the $@!% psych meds created. Who am I to know? I'm just the patient.
I ask for a new neurology appointment at a different hospital. I was directed to the spinal clinic who told me the same %@@! thing - it's diabetic neuropathy. He said I needed a new emg and physical therapy, neither of which I can refer myself to and he did nothing to further that goal. I finally go to neurology and after looking at the same MRI the last neurosurgeon looked at said I needed surgery to relieve compression on my spine. Back to the spinal clinic but a different doctor, and he said I most definitely need surgery to prevent further damage. In the year between surgeon 1 and surgeon 2 I have lost so much function in my hands, I can not longer do anything detailed, play music and often I cannot write my name.
My surgery is scheduled in 4 months from now. I cant help but think that that loss of function could have been prevented but when one idiot doctor writes "diabetic polyneuropathy" on your chart, it becomes the diagnosis, regardless of history, so the first surgeon just saw that and blew me off.
These two examples are far from the only times I have had care delayed, denied or been blown off by physicians.
So now, every interaction I have with doctors is met with suspicion. Now a new doctor has to prove their trustworthiness. This is not a conscious decision - this is medical PTSD.
It is absurd that a condition has to get irreparably bad for a doctor to take action. I don't think, in schools of medicine, they discuss things like medical ptsd. Often, particularly surgeons, they think of the patient as the disease, not a person.
I wish I knew how to change that about medicine, but, I wouldn't know where to start. It seems explaining this to other doctors falls on deaf ears.
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