Relative to the way lupus,scleroderma or any thing that falls under the autoimmune category, has affected your body,your lifestyle,your relationships w/family and friends,financial hardships?
I have lupus sle , RAYNALDS , ddd, ra , and hashitmos , thyroid chronic pain . I was diagnosed 17,years ago . It has been a long road . The hardest part is the fatigue and never knowing when a flair is coming . I am more aware of the signs of a flair now . My family is not supportive as I need .that makes it super hard . I am disabled now but at first I worked and I was sick a lot so I lost my job . It is hard to make it on disability . It effects every thing about your life my joints hurt , I have gained weight , my eyes have been effected . My hair falls out I get moody . Brain fog makes you forgetfull . It is not easy you get mad and sometimes hate fighting the disease . It is a fight every day but I know I have to stay strong . I hope this helps you . You may send me questions if you have more . Support is the best thing when you are suffering .
I am living with lupus since last two years... I was first dignosed with autoimmune hemolytic anemia... got married one and half years ago..(married after nine years of love)husband, inlaws and my family members are very supportive... I work as nurse tutor in a college... i get fatigued easily... i take rest in between my work.. principal and colleagues are very supportive... as a part of my job I have to go to hospital with students..but my colleagues relieve me as I can cause me more ill and get other other diseases... I was a person who loved to travel a lot but this disease has constrained me to home and work place... no outings..no public gathering...
now I adjusted to it but sometimes I feel sad thinking of my condition..because of me my husband also dont go out..medicines and blood tests are very costly..it makes my financial situation unstable and due to that I try never to take leave from college..friends understand my situation and make gathering near my home and more In the evenings so I can also attend.. I have a very good rheumatologist too... after my consultation with him, till now i never had any joint pain or any flare..now am four months pregnant with no active disease now..till now by God's grace everything is normal..
I'm 38 year old female. Diagnosed 17 years ago at age 22 w RA, SARCOIDOSIS, SLE-LUPUS, OSTIOPEROSIS, and began having what my Dr calls Lupus Seizures about 9-10 years ago. Now Seizure free for about 5 years(i take Lamictal for seizures). Severe Insomnia. I have scar tissue on my lungs, kidneys and brain that i know of. The immune Diseases have had cruel effect on my Body and Mind. 17 of the 20 years I've been married has been very hard on my husband (who never complains). I've suffered w pain in my head, eyes, ears, nose, mouth, throat, breast, hands, back, hips, legs, ankles and feet. In 2006 I went into complete kidney failure, no movement for 7 days. I lost sleep, all my hair and thought id lose my mind as well. This was caused by lupus. I delt w this particular flair-up for just over a year. Sarcoid hit my lungs twice causing fluid and terrible smothering.
I wasn't able to sleep lying down. I sat on the couch and slept sitting up for 4 months. There are too many occurances to write about, but the hardest thing to deal w for me is my mind, fatigue and not knowing how i'll be feeling the next hour. Something else that's hard to deal with is when your family says you look fine and not sick. Sometimes i feel like i have to explain myself over and over about how i feel. Some people just don't understand. I'm so tired of trying to explain it. If its not my back then its the sores in my nose, or eye pain, or rashes everywhere, or severe joint pain, or smothering and pain in the lungs. Its effected my mood, my personality, thoughts and feelings. Its been hard on my whole family. Its been so long now that i feel like I've forgotten who i really am... I feel like telling people, "Hey this is not how i normally act." I've struggled w fear, anxiety, stress, mood swings, anger, memory loss, crying and not being able to cry, guilt, lonliness (even though i'm not alone), confusion etc,etc, etc... As you can tell, i cant remember how to spell simple words. I take only Tylenol, ibuprofen, or meds for inflammation. I'm currently on Diovan for my kidneys, Lamictal for seizures, Prednisone for lungs and present rash on my hands and Plaquenil for Lupus and RA. Its very strange and i don't know if i could ever explain it. I feel guilty for even trying to. This is the most I've ever spoken about it. I don't communicate w anyone who has any of these diseases. My husband actually found this website only 2 weeks ago. Thanks for listening to me complain.
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