Behcet's Disease

Please check out my new group to collaborate, commiserate and celebrate our journeys together through all things related. I'm an LCSW, Mom and professional frustrated patient. Behcets Syndrome/Disease

The last post I made was a year ago. At that time, I found myself engulfed by Depression, Anxiety, Exhaustion, Frustration, Isolation, Chronic Pain, Insomnia, Feelings of Failing as a Mom, Paralyzed by PTSD, blah blah blah.

Now, 2024 is here. Unfortunately, I would describe myself similarly, but I am trying my best to start anew each day. I finally have the formal diagnosis of Behcets. That validation is huge, but I don't feel functionally better. I am on tons of medications, in therapy and focusing every ounce of energy I have on my precious children. I have tried to explain my illness to them, but their father (we are separated), does not back me and seems to find enjoyment in throwing me under the bus to try to make him look like a "better" parent. I will not do that to him and my integrity is intact. I can only control my actions and reactions to others; not what others choose to do or not do.

One of my biggest frustrations is the unpredictability of how I physically feel. Time and time again, I have to cancel plans because I just can't find the energy to do whatever is planned. I have learned not to tell my kids if I plan something to avoid disappointing them. We spend more and more time at home and I want so much more for them and their collective experiences regarding travel, hobbies and joyful memories.

I have to accept that I will not be able to work again. Work was a huge part of my life and such a huge passion of mine. I miss working SO much. I was working as a licensed clinical social worker and have kept up my license for ten years, despite not working. My Doctor recommended that I apply for SSDI, but I think I have been delaying doing this because it hurts so much to actually put in writing that I am unable to work. I am seeking advice in how to best apply - using my other diagnoses or only focus on the Behcets? I am in CA, US. Please throw any advice my way. If I was to get denied, I don't know how much energy I have to fight to prove how "sick" I am.

Many thanks in advance! xoxo

#BehcetsDisease

I have a friend who was diagnosed today with Behçet’s disease. It’s rare overall but is rarer here in Canada. After doing some brief online research, this looks like it’s going to be really rough for her (she’s currently admitted in a hospital out of town for testing better than she could receive here). I personally have ME/CFS and POTS, so I know the generic how to help somebody with chronic illness tips, but wondering if anybody here has Behcets or knows somebody with Behcets and can give me some advice on how to support her? Thanks in advance :)
#BehcetsDisease #autoimmune
#chronicallychillteens

#BehcetsDisease

Short run down. Chronic strep throat as child. Tonsils removed. Allergic to strain of strep in 6th grade...almost killed me. Never regained "normal" health. On and off horrid joint pain, pain in eyes, multiple Derm diagnoses, chronic inflammation, chronic insomnia, asthma, then Arthritis, Bursitis, Depression, Anxiety, lost weight then gained over & over, pregnancy very painful and high risk. Spinal Stenosis, Sciatica, Anemia. Got pregnant again & was even worse. Thankful for 2 healthy kids, but Momma is not healthy. I'm 47 now. Labeled with Fibromyalgia but no treatment. Need to be back on pain meds but bc I stopped (MY choice), years ago Drs don't want me back on them. I have done so much research and I KNOW I have Behçet's Disease. Looking for somewhere to go in the US for the validation & proper treatment. 20+ years of struggling invisibly (until huge sores all over neck & head in May 2022). Currently on evil Prednisone, Colchicine, Mobic. Rheumatologist taking too long to have me jump through all of her hoops. Any advice appreciated 💜
#BehcetsDisease #MomGuilt #ChronicDepression #chronicinflammation #Insomniac #Anxiety #Arthritis #Divorce #PTSD