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At Least, Now I Know I'm Not Crazy: Trying to Understand Autoimmune Disorders


Over the past several years, I have been to see doctors and have had ER visits that left me feeling perplexed, confused, and perhaps a little short of crazy. I've struggled with unexplained pain, fatigue, and other chronic symptoms for what feels like forever. I'd have good days and bad days, and some days I just didn't know what to expect. And often the bad days arrived with no apparent reason. Many times, labs, x-rays, and other tests came back normal. It seemed like it was all in my head. The problem was, it wasn't.


A few weeks ago, I called to make appointment with my doctor to see about getting a tick panel run. I'd been out in the woods, and it seemed the symptoms that I'd had over the last several years decided to have a party and invite all their friends. I felt horrible. I had nausea, dizzy spells, vertigo, along with severe headaches, chronic fatigue, chills/night sweats, and my body hurt all over. It was most definitely NOT all in my head.


My doctor was booked up. However, the receptionist offered to make me an appointment with a nurse practitioner. I quickly accepted. I needed relief. And answers. She took a bunch of labs, then said, "With all these symptoms you've been having, I want to take an autoimmune marker, just in case." To my knowledge, I've never had anyone check me for an autoimmune disese. I didn't understand a lot about what it was and I didn't think it was anything to be concerned about. So, they took the labs and we waited for the results.


Lab after lab, the results were normal, including the tick panel. Then, the nurse practitioner called. My ANA (antinuclear antibodies) levels were high and my cells showed a homogeneous and speckled pattern. I had know idea what that meant, but in short, it appeared I may actually have an autoimmune disorder.


In that moment, I was a whirlwind of emotions. What exactly did that mean? Why hadn't anyone tested me before? What came next? What it meant and what came next were more labs and a referral to a specialist.


The labs completed at my doctor's office only showed positive results for Sjogren's Syndrome. I didn't know what that was either. According to the Sjogren's Foundation (Sjogrens.org), "Sjögren's is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas." That explained a lot.


While waiting to see the specialist, I researched as much as I could about autoimmune diseses and Sjogren's Syndrome. I wanted to understand why I feel the way I do and what my body is going through. I learned a lot, but want to continue to learn more.


Getting in to see the rheumatologist was quite a process. Between a busy office, paperwork, wrong numbers and doctor canceled appointments, it took nearly forever to get in... Okay, maybe not nearly forever. But, when your body hurts, you can't focus, and on most days little makes sense, it feels like forever!


Once I finally got in to see the doctor, he diagnosed me with fibromyalgia & polyarthralgia. I also knew little about those. Let the research begin! He prescribed me some new medications and also took a bunch of labs. The nurse called yesterday and said they appeared to be normal, but the doctor would discuss more with me at the next visit. For the record, I'm not a superfan of this doctor and would prefer to see a female anyway. Sooo... A doctor change may be in order. I initially requested a female, but he was the only doctor with any openings in the two months following my visit with the nurse practitioner, so I took.what I could get.


Anyway, the meds seem to, or at least initially, help with the pain. The problem is, they also increase the fatigue I have been struggling with. I took one in the morning and one at night. It kept pain levels down, but I was sleeping most of the day away. Who has time for that? Not me.


So, yesterday I skipped the morning pill and was able to push through the pain and get a bit more done. Last night, I took one pill at 7pm and the other at 9pm. The doctor said I could take the morning pill in the evening if it made me to sleepy during the day. My guess is, they countered each other on some level because here I am, awake at 4am, in pain, unable to sleep, writing this blog.


A friend of mine mentioned some patches that are natural and seem to help other people she knows with their autoimmune struggles. Since I prefer natural remedies anyway, I'm going to look into the patches and see if they can help without some of the added side effects of my current medications.


I don't know what tomorrow holds, but I know Who holds tomorrow. This is a new journey for me. It seems scary at times and I often feel overwhelmed. But I am thankful for the friends and family God has brought along side me to help and encourage me as I take life one day at a time, one step at a time, one breath at a time. I've got this! And if I don't, God does!

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