Well I have been sick off and on since I was 10 years old. That’s right TEN. Fainting in the heat, lack of flexibility, bowing the ankles, stiffness, unexplained illnesses, fatigue that lasted days at a time, chronic dry skin and sometimes the mouth, shortness of breath, unslakable thirst, times of hair loss for no reason, random ulcers that wouldn’t clear up. Does any of this sound familiar? I saw a total of 19 different doctors up to today. NOT ONE of them ran an RA panel.
ALL of those symptoms are associated with RA AND Sjogren’s. Yet not one of those docs caught it. I have been in a very steady decline for over 10 years. My ankles would swell till I couldn’t wear shoes, pain in my hips and tailbone that are agony to sit on, infections in my sinuses, bronchial tubes, and upper respitory tract, ear infections when it wasn’t damp. I cant understand how no doc caught onto this. I wasn’t tested for anything other a low potassium deficiency.
I was dying every day and not one person cared about it. My family would ask “what’s wrong with you NOW” as though this is sometimes I was choosing for myself! I was treated and still am as though this was something that was my fault or some kind of deserved punishment. No matter what my family has asked of me I did it for years. Now that I am in no position to help them they have abandoned me. I am going through this with two of my three children and alone. I have never been more scared in my life than I am right now.
I have Sjogren’s as well degeneration of the right and left knee, osteoarthritis in both hands and narrowing of the finger joints, nodules appearing on my fingers toes and jaw, bone spurs on my heels bottoms of my feel femur and tibias, degeneration of my right hip and pelvic bones, and all of this was missed by every doc I ever had. And even now I cant work I cant seem to get disability (they say I am not sick enough, oh really??) and we limp along. I have never felt more alone than I do right now. And the worst of it is no matter how bad the pain is I cant get a doc to give me anything for pain. I can’t take anything over the counter due to a liver problem caused by the RA attacking it so now I have developed non alcoholic liver disease. Which we RA people know that the treatments can hurt your liver so I am doubly at risk.
They won’t give me a wheelchair, a walker, braces for my hands or boots for the bone spurs on my feet. They say buy them, with what??? I am a musician so this hits me especially hard since I played 11 instruments before I went downhill. I will never play any of them again. I can sing (4 1/2 octaves yeah I am proud I earned it) but I have to worry about shortness of breath and potential scarring of the lungs. I am a crafter, an artist, a writer (published a few shorts) and everything I do or did to relieve stress and create outlets for my busy mind I can no longer do.
There are no support groups in my area so I am really alone in a way that not all RA sisters and brothers can understand. I am determined to smile even when I don’t want to and to laugh in the face of all of this, my kids air high five or gentle fist bump instead of high five and my 13 year old actually went online and researched RA to learn more about it and admitted it scared him. Was a great talk! My 17 year old helps me the most with support and patience and an ear should I need it. He often comes with me to doctor appointments to carry stuff for me and they are both home schooled now to make things easier on all of us and we can do homework on a schedule that works for all of us.
I wish I wasn’t tired all the time, I wish I could wash the dishes without dropping them, I wish I was well enough to work and that my doctor was more understanding. I am hoping for them to send me to a psych there is so much I hold in so many tears I cant shed around my children. I am aware that everyone is born with an “expiration date” and we all die eventually. Its hardest for me to know this will kill me. That a lifetime of neglect by docs, family, and husband has brought me to this place. Its dark here but I got my light and while its not very bright and it wavers a bit, IT STILL SHINES.