Hi y’all. It’s so nice to be with people who understand my story. It’s a long one and I’ve never been short on words, so if you’re interested go grab your coffee, snuggle in and we’ll begin.
I’m a 54 year old momma and artist living in a suburb outside of Dallas. In hindsight it’s pretty clear I’ve exhibited symptoms since my early childhood but my diagnosis didn’t find it’s way to me until much much later. It was a bitter cold day, which to those in this neck of the woods is anything below 32 degrees Fahrenheit but this day it was in the teens. The kind of weather that makes a gals bones ache, humidity in the air only compounding the issue. I began having uncontrollable muscle movements. First it was just a twitch in my leg but it soon grew to jerking in my legs, my arms, my neck. It was scary, this was new. Within the hour I had a case of brain fog so severe I could not figure out how to use my cell phone I was holding. It didn’t help that it was new but this wasn’t just me being technologically inept. I couldn’t recall my husbands phone number or how to retrieve it. I couldn’t recall anyone’s number but I knew I heeded help and I was alone. My kids, now young teens, were at school. The pain was so severe I knew I couldn’t walk not to mention I had about as much grace as a newborn calf.
I began just pushing buttons. 911 hadn’t entered my thought process. This was when cell phones had just become equipped with cameras and I had been a busy girl taking candid shots of all my friends to attach to their contacts. I lucked upon a picture of my friend and I got the call placed. She in turn called my husband who left his job running a printing press in Dallas to come to my aid. By the time he arrived I was in tears, in pain and in fear. We arrived at the hospital where we were asked a lot of questions to which I had no answer. We waited. We waited and waited and waited and I was getting worse by the minute. An off duty police officer still in uniform was sitting in a chair near me. I was seated in a wheelchair in the waiting area. I recall hearing him talking on the phone and he said “I’m sitting here watching this chick having seizures. If they don’t take her back soon she’s going to stroke out”. Now, I had no idea if he knew what he was talking about or not but it put the fear of God in me.
Six days I lay in that bed, twitching and jerking. I remember very little of it but I recall them coming in quite often to ask me what seemed to be very simple questions such as who is the president? What is your name? Where are you? In my mind I knew that I knew the answers but I could not tell them. The words just didn’t come. I had very minimal word retrieval and the words I spoke usually were not the ones I wanted or were not in the right order or just plain ole were not pronounced right. Something was very wrong. They ran a variable potpourri of tests on me. They braided up my hair, attached electrodes and ran tests on my brain revealing I had two “black holes” which actually are white in appearance on the films. They were common in MS patients but they couldn’t explain why a what seemed to be normal healthy then 44 year old women would have white matter. They stuck me like a pig on Christmas day to run multitudes of blood tests, all inconclusive and of course, the sent me for a psych eval. Because we all know if the doctor doesn’t know what it is then the patient must either be crazy or faking. I was dismissed without a diagnosis.
My sweet, dedicated and patient husband carried me to over twenty doctors in the year that followed. We quit counting after that (we only have so many fingers and toes!). I saw every kind of -ologist there was. They really thought it was MS until they ran genetic blood testing on me which did not identify the gene marker for the tendency to inherit MS. So finally, the right ologist, the rheumatologist, did a thorough exam. He checked my joints, my tender spots, my hands and feet, I’m sure you know the drill and that combined with the results from my blood work he diagnosed me with RA and fibromyalgia. I remember thinking so naively, “well at least now I know what I have”. What a can of worms I had opened up. I did not like this doctor, and I have come to learn that it’s okay. Not every doctor is going to be right for us. It’s a relationship, one requiring trust and respect on both parts. My advice to you is if you are not happy, you keep looking until you find the doctor that is right for you. You deserve it.
I began seeing another rheumie along with my GP. My GP had long ago diagnosed me with a “sun allergy” b/c I often would break out in a strange rash after sun exposure. On one such day she decided to run a lupus panel on me. It came back positive. “Impossible ” I thought. How can I have both Lupus (SLE) and RA. Well, not only can you, I do. Lupus patients do not always have the typical butterfly rash across the face. Rashes can appear in many locations, lucky lucky me. My visits to my new rheumie were frequent in the beginning, every 2 weeks, then once a month for the first couple of years. My blood and urine tests always left her quizzical. She really is a bright doctor and quite driven. She was forever researching, conferring with other physicians, anything it took to try to dx me and treat me correctly. I was a puzzle. I still am but I now at least have correct diagnosis. Many of them. I collect comorbidities like my son collects baseball cards. Oh trust me when I tell you I have had dozens of incorrect diagnosis as well but let me share my list of current comorbidities that have been correctly identified and diagnosed. Ready?
Here goes: my main diagnosis is RA, with sub diagnosis of SLE (lupus) and comorbidities of Sjogrens aka sicca syndrome, brain fog, depression, anxiety and mood disorder of undiagnosed origin, PTSD (which has nothing to do with my auto immune crap, that’s a whole other story!), MCTD (mixed connective tissue disease), esophageal dysphasia (extreme inadequate ability to swallow, high volume of spasms in the esophagus), asthma (diagnosed at 53 due to lung involvement of RA), fibromyalgia, chronic hip bursitis (bursas have calcified and need to be surgically removed), impingement syndrome of shoulders, multiple lypomas w/myalgia (just means they hurt), spinal deformity caused by RA, scoliosis w/nerve compression, spinalesthesis and my latest addition to the club…gastroparesis.
I had surgery to correct rectal and vaginal prolapse, bladder lift in 2012, hysterectomy, 11 lithostripsy procedures (kidney stones), c-spine surgery, multiple spinal epidurals, and more steroid cocktails than any one human should have. I lost count of MRI’s a very long time ago. I have had a full body scan, barium tests, swallowed cameras twice, sleep testing, and psychiatric testing and I am more than 100% positive there at least a dozen tests that have slipped my mind. I am currently in desperate need of an anterior, posterior spinal deformity reconstruction but my insurance finally gave up and cancelled me. (Nice of them, I thought).
So, that leaves me here, most always, either in bed or on the couch. I can no longer do the grocery shopping as my walking distance is limited to a few grocery aisles, can’t stand too long so cooking is excruciating, can no longer paint nor draw with the intricate detail that has been for over forty years my signature style. What I can do is this, I can thank the good lord above for the love of my family. I lost my husband to pulmonary fibrosis in 2009 at the age of 47. He was my everything, my rock, my best friend, my lover, my caregiver, my confidant. I miss him desperately still. We did have two children which are the absolute apple of my eye and the only reason I bother to fight this nastiness I call survival. My absolute darling daughter is married and lives in Japan. Oh how I do miss that child. Thank goodness for skype so I can see her face every Thursday night. I dream of getting my back surgery and being able to visit her and my son in law one day. Our son is the most generous person I have yet to encounter on this earth. In his mid twenties he has chosen to live with his momma and at this point support me. He pays the bills and has for six months now. He chooses to continue doing so until my social security disability is approved, which, fingers crossed will be in the next 3-6 months. I hate that he is even in the situation to have to make such a choice. I never could have imagined I would be in such a predicament. But here we are, friends, and although I will weep the day that he finally leaves, I want nothing more than for him to be able to in all good conscience move out into his own place and start living for himself. Thanks for reading my story and if it is too lengthy to post, heck, I understand. Just let me know and I will attempt to write a readers digest condensed version for y’all. In the mean time I will just say goodnight, God bless, and thanks for letting me bend your ear, it sure was nice.