I’m not sure of how many people that actually has knowledge of this disease. How much “actual” FACTS you think you have? Do You know full knowledge of how much PHYSICAL stress that our bodies are put through. I’ll break it down for you all a little.
A typical day for me is either a day of vomiting, pain from nerve spasms, all over my entire body. I went from 306 pounds to 110, if that now, because I can’t eat most days. Before you cheer my weight loss, try not being able to eat, even if you wanted to. Then when you do, in return, you get to vomit it all up, as if you were bulimic. No offense to anyone that is suffering from bulimia, or that wants to be extra small. As for me, NOOO way. Thank You, No thanks.
This isn’t a feel for me, or I’m need of symphony blog. It’s an awareness type blog. Books cannot tell you how I feel with lupus. Nobody can dictate someone else ability to know what or how they are feeling or going to feel based on a book one may read alone. To be totally honest, some doctors still don’t have a clue what “WE”, as a Lupus, Sjogren’s, Fibromyalgia, or RT Arthritis patient Really goes through on a DAILY.
Some people maybe asking why haven’t I applied for SSI/Disability. I have about five different times, with half truths and whole lies being told by Social Security Administration and judges themselves. I know from raw uncut experience. Sad but so true. When I get my period, it becomes a HORROR story and I feel as though I’m going to die, from a week and a half of excruciating pain. NO, not regular cramps. Try in labor with the contractions being 1 minute apart. YES I’m hospitalized every single month due to the pain. The ER knows me by name, and I have a special pain cocktail. I thought that was quite funny just to mention, but I am so serious.
This is the part where it gets really interesting…. I go through the necessary channels to get a SSI/Social Security Disability once again. I hired a Law Firm to help me as such. Before the attorney was hired, I was at the moment of receiving medical care and medical attention. Not just medical care from my original Physician, I also was seeing physicians that Social Security sent me too for their information. r I fell into hard times of being homeless, to the Covid-19 pandemic, we, my husband and I, we lost everything. I was still able to go to the ER, because I lost my medical insurance. I was denied in open court, ” ZOOM”. Even though they had the Florida Rehabilitation Representative, to score me out of their own law abiding system of points to “LEGALLY” say I qualify to receive SSI/Social Security Disability, but a Judge to say, because he read in a “BOOK”, that I am educated and young enough to find something. Never ONCE did the Judge READ any of my medical history, from my regular health care provider, ER, and ALL the DOCTORS that SSA sent me to themselves.
To All of you that took the time to READ my Blog, I REALLY APRRECIATE You. The thought that someone cares enough for some that maybe going through this same unpleasant ordeal, or you maybe experiencing something such as or just as this. My heart goes out to you and or yours. Send me an email or leave a comment so that we can connect. Thanks All…. Peace & Blessings to you.