Who else sometimes struggles with proving to people how sick you are because you don't look like it? I was diagnosed at 27 years old, and that's all I used to hear. Sjogren's does not discriminate! #sjogren 's #InvisibleIllnesses
Awareness is needed; especially with how prevalent it really is. #sjogren 's syndrome
1 reaction I have very severe cochlear otosclerosis with severe to profound hearing loss in both ears and multiple autoimmune and chronic conditions. Since I am using hearing aids on both sides but getting little benefit from one of them due to the severity of the loss and difficulty with speech discrimination too, my doctor wants me to undergo a stapedectomy. I’m pretty nervous to undergo this surgery and would love some feedback about pros and cons and any alternatives I may be missing. Thanks!
#Deafness #autoimmune #MyastheniaGravis #Surgery # chronic illness# sjogren’ssyndrome #POTS #Hearing loss
Hi, my name is 1434. I’m new to The Mighty and look forward to sharing my story.
#RheumatoidArthritis #sjogren #chronicfatige #suicidal . It's hard to put one's journey of Chronic Illness into a story, but I will try. I started ill at age 5, I had a twin who became unviable in the womb and I carry the person around with me everyday. At age 5 I remember having huge tumors on my left thigh. They tried to freeze them because they bled a lot and finally decided to take them out. Many years later my Mom told me it was a twin and what they pulled from my thigh was a mass of cells, teeth and hair. It left two very large scares and kids always tease me. I had a lot of childhood illness but with antibiotics you could solve everything. Fast forward to 35 I began having intestinal problems, I would have bouts of diarrhea that my body didn't feel until it was to late. I kept telling my Dr's and nothing was done. I finally got a referral to a Gastroenterologist who did a colonoscopy and found several polyps that is were left alone even for a week I would have 1st stage colon cancer, she got them out and followed up till I got Gastroparesis. I went again and she tested it by whatever, and when I was waking up I heard her speaking with my Husband and she told him I did have Gastroparesis and since I could not eat and was in the hospital many times, she had the gall to tell my Husband that I was going to die. Somehow I kept him from killing her right there on the spot, Again a long story short we were in the hospital again and met a Gastroenterologist who would see if he could help me . He got me to the only Dr in town that knew anything about what was happening and he tried to help. It got to the point were the only thing left to do was take out my stomach. So I ended up with no stomach and no desire to eat. Now that I have bored you to death I will just skip over the rest with a get to the rest. I believe I have been Depressed my whole life it got worse as I grew up. At last I met my husband and he helped me get the help I needed so I didn't self medicate any more. I have been with my Psychiatrist for over 25 years and he watches me very carefully and since my last suicide attempt he has my husband disperse my medication, so everything is locked up. I have a small Tribe helping me but as with my Husband I feel like such a burden, he would do anything to help me. My worries are that he is 9 years older than me, he had a sudden heart attack in December and that really scared me because as most know you become a Ghost when you have any kind of Chronic illness. Okay I have bored you long enough and I grateful to find groups like this.
#Fibromyalgia
Help, what does everyone do when not only have you hit the invisible wall of pain, fatigue, emotional and physical sensitivity….but you’ve gone around it and kept going for a few miles after it. I went out for coffee with a friend, now I’m in so much pain, exhaustion and also emotionally I’m completely done.
Hi everyone, I don’t usually post. I just read because my experience is that I scare people off due to my multiple and challenging diagnoses. It’s like they don’t know how to talk to me like any regular person or maybe they think they might catch one of my non—communicable conditions or something. See a very short list in my hashtags. People I do speak with feel that all I talk about is medical stuff but when you ask how I am, how can I NOT bring it up? This is my life and my world is surrounded by medical considerations. And yes, I do other things that are life affirming and creative to stay afloat but the conversation never goes there. It’s like they only see and talk about medical and then blame me for it and excuse themselves from my life. So, I don’t know how to get my feelings out. There is a lot of grief left from the functioning life left behind. I need community but I really don’t even know where to start.
#Disability #myasthenia Gravis#Dysautonomia #Deafness #sjogren ’s Syndrome#mast cell activation disorder#CPTSD
40 years + when will it stop
The pain, the flares, the helplessness,
When will it just stop
I cannot fight anymore
I’m becoming so weak
…
Hi everyone my name is Donna. I am new to The Mighty and can not wait to connect with you lovely people. I am hoping to meet some new friends. I suffer with a lot of conditions. I'm struggling with a really bad Fibro flare up since the 8th September so I haven't been able to work. I can't get my husband to understand how much I'm suffering and that I'm not fit to go back to work, so I feel so alone sometimes 😥
#Endometriosis #Fibromyalgia #Joint hypermobility syndrome
#sjogren 's syndrome #Depression #Anxiety #PTSD #Arthritis
So sometimes I spontaneously write poetry. It's been awhile but I had a moment today. 🌞💖☮
The swing
Simple child’s toy
Greatest invention ever
Hands gripping chains
Legs pushing the air
Eyes closed; face upturned to the sun
Right now I am flying
Right now I am running on thin air
Right now time stops, the world quiets
And I have no mass in the wind
Right now I am not 43 and life-weary
Right now I am 5 and life makes sense
I am also 100 and life has long since made sense
But I don’t care
Right now is right now
And I am swinging and it is awesome
When I stop, time will restart, and things will get loud
I will be 43 and weary
My daughter will throw a fit because it’s time to leave the park
But I’m giving right now 5 more minutes
Because sometimes I need to just swing
And be awesome
#Fibromyalgia #Arthritis #sjogren 's syndrome #PTSD #Anxiety
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