By skyforbes 
This is a long post, but I’m publishing it all at once, because I really want to keep the information together. You may want to bookmark this post because even if you don’t have these problems someone you know or love might need this information.
Looking back over my entire life, there had been glaring clues that I might have an AI issue (I’m going to use AI from now on just as a shortcut). Diagnosed with Anemia from my early childhood, Chronic Constipation and Bowel Immobility since I was a toddler, Chronic Eczema that covered my hands up to my elbows and feet up to my ankles, most of my childhood, teens and early adulthood. About 6th grade, a lengthy outbreak of Chicken Pox that looked like smallpox and Mononucleosis that took me out of my last semester of my Freshman year of High School. (I slept about 19 hours a day for months)
I had several very scary and strange occurring illnesses that caused partial numbness and paralysis for a period of several days, not long after I would have the flu or a virus. I remember falling down the stairs when I was in Junior High when my leg gave out on me without notice. I was plagued with fatigue that was abnormal. I would be ok for several weeks, then collapse in bed for a day or two to just recover from “life” or stress.
My first pregnancy was iffy when I spotted every month until my second trimester. My second baby was a very difficult pregnancy and she was delivered 5 weeks early. I had to have a Hysterectomy when I was 30 because I would have a 10 day period every 2 weeks that I couldn’t get off the couch because the flow was so heavy. Then when I was about 38 the extreme fatigue came to a head with a diagnosis of Hashimoto’s Thyroiditis. This is when your body attacks the Thyroid tissue and begins to destroy it. Thyroid meds never seemed to work well, but it was better than before the diagnosis. Hashimoto’s is a real indicator that a person has AI, but no one ever mentioned that to me or asked questions concerning other possible AI illnesses. Then in my mid 40’s I started having headaches and odd dizzy spells that felt like the room was spinning out of control. Going to bed for the rest of the day was the only thing that helped. Gastric issues became increasingly worse. After a meal, I would feel like I was going to explode even if I ate very little.
Then came the Heart Disease which was a complete and utter surprise. My only hint was that the hill I walked with my husband every evening was becoming impossible. He would have to pull me up the sidewalk till we reached the top, then I would be fine. I had 3 heart attacks in one weekend. My life changed forever and everything else about my health took a backseat to dealing with it. Nothing was as important as that diagnosis. To the doctors, Heart Disease was the cause and answer to anything else I might have questions about.
Almost 5 years ago, I had several heart attacks once again because of several blood clots that have still not been clearly explained. Then about 2 and a half years ago I started having dizzy spells everyday. I would be so dizzy that I’d have to sit down on the floor in hopes of avoiding falling over. My cats would stare at me like “Mom? what’s your problem?” (my kitties talk, don’t yours?) I would discuss it with my husband and we figured this was a manifestation of my heart issues, since that was getting worse. Like I said, everything was blamed on heart problems.
In May of 2016 I had a new heart procedure that took care of my major heart blockages, but it was a lengthy procedure under anesthesia, with a boatload of blood thinner. I emerged from that with less heart pain, but severely anemic and within a few days feeling like I was having a nervous breakdown. My neck hurt, my head was killing me, and I felt like I’d been hit by a massive truck. I just chalked how I was feeling up to different meds and the trauma I’d experienced during the 4-5 hour procedure. But it didn’t get better, it just got worse.
I found a new Primary Care Physician and she was pretty thorough, but we headed the route of looking at my neck, seeing several neurologists, having MRIs and CT Scans and injections. I remember her saying that first appointment. “You know, about half of people who have dizziness never find out what is causing it.” I said that wasn’t going to work with me, that I had to find out because it was just getting worse. I tried several pain meds, but there’s only one that works for me. It dulls the pain, but never made it go completely away. The meds would stomp it down so I could get out every once in awhile to be a “normal” person, but it was always looming over me. I vowed that I would find the answer. My daily prayer was, “God please, tell me what is happening… tell me what I need to do to get better.”
At that same time my joints, especially my wrists and right hand, started swelling and becoming very painful. My left hip pain, that had been manageable before, became more and more painful. I started having ulcerations in the lacrimal ducts of my eyes, nose and mouth. I was thirsty all the time and no matter how much water I drank my mouth was always dry. I felt like someone was strangling me. My eyes felt like they had sand in them, and I couldn’t wear my contact lenses anymore. Then the swelling and cysts in my Lymph Nodes, sweat glands, and ALL my lubricating glands (if you know what I mean). That really started to scare me and knew something really weird was happening.
The worst was the headache and neck pain; it was relentless and never went away. It wasn’t a migraine, but the pain was just as debilitating. I started doing research not long after my heart procedure. I Googled and looked up everything on neck and head pain and was presented with 4 possible categories of causes… Trauma (Injury), Bone problems with Vertebra, (which I did have some degree of), Bacterial or Viral Infections, or AutoImmune Disease. …what?
I asked my PCP to test for Lyme Disease and any other tick born illness, because when we lived across from the lake I’d have a tick bite at least once a season. All those tests came back negative, so we moved on to other ideas. As I navigated the list of AI illness I kept seeing one subject over and over… that was the incidence of Gluten Intolerance with literally ALL the AI illnesses. They all had Gluten as a common denominator. I didn’t know much about Gluten, and what I did think I knew, was inaccurate.
You want to hear the funny thing? I discussed this concept of my headache and loss of mobility in my neck as being AI with 3 Neurologists, one Surgeon, one Neurological Interventionalist, one Orthopedic doctor, a Vascular Internist, and even a Rheumatologist. I didn’t have the antibodies that the Rheumatologist was looking for and even though I tested positive for Rheumatoid Arthritis, she wouldn’t treat me or accept me as a patient. I was disgusted and so disappointed in the Medical Community. My Hospital Network is having problems, and Rheumatologists are virtually nonexistent. No one would help me, not even my PCP which agreed with me about what I was dealing with. (she said she didn’t have the experience with it.) I’m not new to this situation, as I’d had to navigate all the problems with my heart and cardiologists.
An indisputable confirmation for AI showed up with my new Injectable Cholesterol medication, Rapatha. No matter that I was watching my diet, and following the protocol, my Cholesterol was rising and the $1500 a month medication that I considered a magic bullet, caused an AI reaction of stinging, itching whelps and blisters. That was out, and I had been counting on it doing a miracle.
I got on a waiting list for a Rheumatologist near here. She has a reputation for being experienced and openminded. She looks at the entire patient and knows how to diagnose, “outside of the box” patients. It took me 7 months to see her. Seven months of getting worse everyday.
So yes, I’m on my soapbox and wanting everyone to know about AutoImmune Disease. It is like a smoldering fire that can become a conflagration without notice. It can sit there in silence and bide it’s time for years, and you won’t know or recognize it; you or the doctors. My body was slowly corroding, when the Heart Procedure traumatized my body and caused what they call a “Flare”. A sudden worsening of symptoms due to some over stressing of your body systems.
Since Christmas I’ve been made aware that a reoccurring Bladder infection was due to a Strep B infection caused by “Leaky Gut Syndrome and Gluten”. Then the hip pain wasn’t really my hip at all, but undiagnosed Degenerative Disc Disease of my Lumbar vertebrae. The discs have collapsed because the Synovial Fluid has been leached out by the Sjogren’s Syndrome; a nerve is pinched or infringed because the bone is pressing on it.
Please read my previous posts on Gluten and why it’s so important if you have thyroid problems to be aware that it is a huge factor in ANY AI illness. If you have any CHRONIC illness or symptoms please read up on how Gluten could be a factor. It will open your eyes and you WILL be willing to adjust your diet to be rid of the illness and pain. You will not get this information from a GP or specialist. Gastrointerologists know that Gluten is the cause of Celiac Disease, but unless you have all the blood work and very invasive procedures to prove it, most times you’re out of luck. They just say you have IBS. If you have that diagnosis please get off gluten and milk for awhile and see if you can feel a difference, it could be Celiac Disease and not just IBS.
The doctors in the US are trained to give you a medication for what ails you. Very rarely do they want or have time to get down to the core issue of what it is that’s causing your illness or pain. You have a 15 minute chance for them to figure it out; if it’s not glaringly simple they will throw a prescription at you and ask for the nurse to bring in the NEXT patient. It’s up to you to be informed about possible causes, that’s where you and Google come together. Start researching, keep a notebook, and be diligent. Don’t be afraid to ask the doctors questions or bring up possibilities. The doctors just do not have time or the inclination to figure it all out for you.
I’ve been on my new medication for a month now, and it’s very slow going. Fatigue is one of the major symptoms of Sjogren’s and most other AI illnesses. It’s been like having a mild case of the flu for the last 2 years. I can see small improvements, but this is trying to take on a lifetime of inflammation and destruction.
Some have wondered why I’ve kept on blogging if I’ve felt as bad as I have, and I will tell you this… I HAD to have something normal about my daily life. I’ve needed to stay busy and try to be creative, and to be doing something that I enjoyed. There have been times that it took me forever to put together a post, and it may not have been anything exciting. But I just needed to stay functioning. And as far as sharing all this with you, it’s a tough call. Some people don’t talk much about their health issues because people don’t necessarily want to hear it.
But I have said from Day 1, I will keep things real here.
Because I want to be the kind of person that can share information on what they’ve been through if it might help someone else. It’s taken me two years to get a diagnosis, but years of illness.
So, now I ask you… have you experienced anything similar? Do you have an Autoimmune Disease?Have you had a diagnosis, or are you still trying to navigate an illness without medical or family support? Let us know… you’re not alone.
joining in here: