Hi, I’m new here. I’m a stage 3 breast cancer survivor almost 9 years cancer free, have chronic pain following that and a serious car accident 5 years ago and have sarcoidosis. My pain doctor is weaning me off oxy, but I can’t take NSAIDs so other than topicals and Tylenol I’m out of luck. He just doesn’t seem to get it. So frustrating. Hopefully the I can find some good advice here. Thanks, Shelly # #BreastCancer #ChronicPain #Sarcoidosis #Depression #Anxiety #Arthritis
Hi, my name is kitt175. I'm here because I was diagnosed with sarcoidosis in 2010. In 2014 neuro sarcoidosis was added to my diagnosis and early 2023 cardiac sarcoidosis was added too. I volunteer with SarcoidosisUK and enjoy talking with others about our journeys
Hi, my name is HPA39. I've been diagnosed with chronic allergic asthma with genetic heart condition so on oxygen, also have Dercums disease & degenerative spine with having 1discectomy. My husband has neuropathy multi organ sarcoidosis with Osteoarthritis degenerative spine & ulcerative Charcot foot has to wear a specialist boot, we were a semi healthy couple & parents until rare condition took hold of us both with debilitating pain
Hope to find some useful tips that stop us from feeling guilty on bad days#MightyTogether
Having a hard time finding the good in life. I have an amazing family, with four kids and a wife at 35. The last three years have been the hardest. Was working 60 plus hours a week until 2020 I hit a wall. I was at 215 pounds 5’11”. Then the fatigue and weakness came. Along with debilitating anxiety and depression. Halfway through 2021 I was diagnosed with sarcoidoses. As well as some lower back problems from undiagnosed spina bifida. Had a full fusion of my lower lumbar.
I cannot work anywhere close to what I used to. I feel like a failure most days. Barely keeping up with my kids. I’ve been detained 5 separate weeks for suicidal ideation and tendencies. Horrible experiences… sitting in a room full of kids, drug addicts, and convicts. Listening to depressing stories that makes my stuff feel not so bad.
I’m at 150 pounds now, trouble eating, sleeping, drinking. Body aches everywhere mostly around my joints. Still dropping weight. I don’t use drugs or alcohol anymore nor do I use tobacco. Sober 4 years from alcohol. Recently tried and gave up THC. (Doctor recommended) now I have no appetite at all. Most days I wish I could sleep and not wake. #MajorDepressiveDisorder #Anxiety #SpinaBifida #Sarcoidosis
Hi, my name is amyjolaw. I'm undiagnosed officially, several doctors are leaning towards sarcoidosis, after incidentally finding lesions on my spleen that were thought to be cancerous, I had a pet scan was told cancer had metastasized throughout my spleen, liver, bones and one lung. had liver biopsy two weeks after the pet scan that showed I did not in fact have cancer, but did have some granulomas that mimic cancer cells, which was honestly met with mixed feelings, I felt like I had decided I could and would fight cancer with all I had, but why does my entire body hurt and why am I still exhausted after 12 hours of sleep? Sarcoidosis kept being thrown around, what the hell is sarcoidosis? Appointment with pulmonologist and biopsy will hopefully give more peace of mind.
Do any of u wish that we didn’t have to feel our feelings? Between my physical&mental ailments &now I lost my biggest supporter my husband&im scared,lonely,sad,&exhausted all the time. He was my everything and now what? It’s so important I don’t stuff my feelings I know that intellectually but idw feel them.#PTSD #Depression #Anxiety #Sarcoidosis #lymphocyticcolitis #EosinophilicEsophagitis #ADHD