Life with an Auto-Immune Disease:Ashley’s Story
About 50 million Americans (predominantly women) suffer from auto immune disease. If you have lingering symptoms of unknown causes you too may be suffering from an autoimmune disease. This means your immune system went rogue and is attacking healthy tissue. Whether it’s lupus, graves’ disease, fibromyalgia, chronic fatigue syndrome, pernicious anemia, multiple sclerosis, celiac disease, EDS or other life ravaging and altering diseases the culprit is the activation of your immune system against the body itself. This is a story about Graves’ disease, & Dermatomyositis (DM) as a neuromuscular and an autoimmune disease. It’s Ashley’s story. Maybe you can relate: debilitating symptoms, lots of doctor & specialist visits but no real answers.
“My journey with autoimmune diseases probably began before I was aware of them but I was 27 years old when my life was forever changed by my new reality. At that time, I had been having sore throats that wouldn’t go away, hot flashes, and a recurring fever. At one point that fever spiked so high that I nearly passed out while driving. It landed me in the hospital after my father rescued me from the side of the road.
After numerous blood tests in the ER and a CT scan, Dr’s found was my thyroid to be hyperactive and quite enlarged. I was diagnoses with Graves Disease. OK, not great but not the end of the world… yet. A year or two later, the nodules on my thyroid gland were only getting worse, so it was decided that I would have my thyroid removed and begin with thyroid hormone replacement.
After surgery, I settled into the routine of taking my thyroid medicine every morning and thought, ‘well, this really isn’t so bad’. After all, the issues I had been having seemed to be rectified. That same year, (now age 29) I found out I was pregnant with my son. Continuing to take my thyroid meds, I had a very normal pregnancy without complications & delivered a whopping 9lb baby boy. However; a few days after delivery, I knew something was not right. I couldn’t put my finger on it, but something was very, very wrong. At first, I chalked it up to the stress of having a new baby at home; I hadn’t had a newborn in nearly 9 years, but as time went on I knew it was something more. First, there was this rash on my hands and face that wouldn’t go away. Then the vertigo spells. I’d be sitting on the couch doing nothing and all of a sudden the room would start to spin around and I’d have to sit there with my eyes closed until it passed which was immediately followed by a trip to the bathroom because it would make me so sick to my stomach that I would have to throw up.
Excusing away the symptoms:
At first, I concluded that it was a hormone imbalance and hoped it would resolve on its own the further I moved away from my delivery (after all, this wasn’t my first time around the block having children), but then the muscle weakness started. I would wake up so sore, as if I had done a strenuous workout the day before, but I hadn’t. I started having trouble getting dressed, climbing stairs, putting dishes away; pretty much anything that required any type of lifting at all. Now, mind you, before I had my son, I was working out 4 days a week, doing a Body Pump class, I was in the best shape of my life really; so when my muscles started to fail me I was extremely scared.
I went to my Endocrinologist, hoping that this had something to do with my thyroid medication needing to be adjusted. He did some blood work and the next day he called me and said nothing was wrong with my thyroid hormone levels; however my CPK levels were very elevated. Basically, it said that my muscles were breaking down faster than my body could repair them and that I needed to find a Rheumatologist right away.
Getting into see a rheumatologist sounds easy; but as I soon discovered this one was 6 months out on a first appointment. My doctor called and made an urgent request on my behalf because he didn’t think I would be able to walk much longer with the rate at which my muscles were deteriorating. After a muscle biopsy it was confirmed that I had Dermatomyositis! An ugly word that I had never heard before (could barely pronounce) Most doctors have never had the opportunity to deal with this disease either. I suffered from a very rare autoimmune disease, brought on by an even rarer precursor (when my son’s blood mixed with mine during delivery, my body saw his blood the same way it sees an infection and decided to attack all my voluntary muscles).
LIFE is Being Altered
By this time, my husband had to pick me up out of the bathtub because I could no longer stand up on my own and I was eating only soft foods, because I could no longer swallow solids due to my esophagus being affected. I also couldn’t pick my son. My face and eyes were so swollen, I could barely see. I was unrecognizable. This all happened in a matter of a few months’ time. There were days that I thought, (and I’m sure my family did too) that I was not going to make it. I was going to die of this rare disease that no one had experience treating.
Thankfully, I did make improvements after I started various treatment which consisted of 60MG of Prednisone/day at and then Imuran (which I had to stop taking because all my hair fell out and my WBC dropped below 2.0). I also tried Plaquenil and antibiotic therapy which only worked for a short time.
I am still on the Prednisone, 16MG a day is the lowest I’ve been able taper, and I am currently waiting for insurance to approve an IVIG infusion treatment, which is like a blood transfusion, only it is Immuglobins taken from about 3000 different donors and is slowly infused with my own blood and has been shown to stop further muscle damage in people with Dermatomyositis; DM. I also take a handful of supplements as well. Coconut Oil 2x a day (in pill form); Turmeric 2x a day; Vit D: B12 for energy (because there is never enough of that anymore). I also eat a high protein diet and drink protein shakes (Special K are my fav) in between meals, because my muscles are in a constant state of repair and so I try to give them plenty of support.
So what does a person do when they find themselves in situation like this one? And I say it like that because it was as if I was transported from my life into another foreign place against my will. No amount of pinching was going to wake me up from this nightmare! If you’re like me and brought up in a faith based, God loving home… you pray. You pray a LOT!
I spent a lot of time asking God; why me? And then, you stop feeling sorry for yourself (also with the Lord’s help) and you realize that that you just have to keep going and keep living…. even on the days you don’t want to.
Yes, things are different now; I have had to make adjustments to almost everything I used to do without thinking. My daughters (14 and 11) have to help mom out more than I would like them to, but to my surprise, they don’t seem to mind. I make sure I get in bed early so that I am not exhausted the next day; I still work full time as of right now. Avoid stressful situations if at all possible because stress is a big trigger for most autoimmune suffers. I get in as much one on one time with my son, daughters and husband as I possibly can. I realize now how quickly life can change.
This a blessing of sorts, not a curse. Would I have ever realized how precious life is had this not happened? I am now filled with so much gratitude. I don’t know; but I do know, I won’t give up nor will I go down quietly; and I pray that I can help someone else.
Maybe there is a woman out there right now who is having all kinds of issues and she keeps going to doctor after doctor but finding no relief. Autoimmune Diseases are complicated (understatement of the year); and even though they seem more common than ever, there are still a lot of doctors who have no idea how to treat them or what to do with a patient that has one. I pray for a cure, for all of us who suffer…..A real cure, not just a band aid, as most of the current treatments are; and I pray for strength in the meantime.
Work in Progress
My journey is not over. I’ve determined this disease will not rule my life. I would encourage anyone out there struggling with autoimmune disease (even if you don’t know it) to keep searching. If the doctor you’re seeing can’t give you answers…go to another one, and another until you find one that can help, and is also willing to try to do things at your pace, not just give you and handful of Rx and send you out the door. What works for one person, can have no effect on another and vice versa, so just keep trying different methods until you find what works for you. I’m still looking for that perfect balance myself, and I’ll just keep on ‘keeping on’ until I do.”
September 30, 2016