Where do I begin this post? If there is one I would like you to read, it’s this one because it’s going to set the stage for what’s been happening and what’s to come. It started around this time last year but REALLY hit me when I was running the marathon in January. I trained so I knew I was ready but how the hell was I already dying at mile 2?! There was no way. I refused to believe that there was something wrong. I had everything going against me. There was a downpour, temp dropped, then the sun came out and temps went up all in a matter of hours. I thought it was my Fibromyalgia flaring up but this did not feel like it. The pain and everything I was experiencing was sooo different. I called McFly and my best friend because they are my voice of reason and they helped me finish.
Once I recovered I immediately went to the doctor to see what was going on because my body was ringing some alarm bells and they were loud! Long story short, I was diagnosed with Sjogren’s Disease (Sjodren’s Syndrome) What the hell is that?!? Let’s go over that and rewind back to February. Sjogren’s (SHOW-grins) is an autoimmune disorder where the immune system attacks healthy tissues. Normally, the immune system protects the body from infection and disease. This is a chronic (long-lasting) autoimmune disorder and the immune system attacks the glands that make moisture in the eyes, mouth, and other parts of the body. The main symptoms are dry eyes and mouth, with many reporting fatigue and joint and muscle pain. In addition, the disease can damage the lungs, kidneys, and nervous system. Sjogren’s disease can occur by itself or alongside other autoimmune conditions such as rheumatoid arthritis, lupus, or Raynaud’s.
Sjogren’s disease may have different effects on the body, and the symptoms vary from person to person. In some people, symptoms cycle between mild and severe.
Common symptoms include:
- Dry eyes. Your eyes may burn, itch, or feel like they have sand in them. Sometimes, the dryness causes blurry vision or sensitivity to bright light. Some of it is due to inflammation.
- Dry mouth. Your mouth may feel chalky, and you may have trouble swallowing, speaking, and tasting. Because you lack the protective effects of saliva, you may develop more dental decay (cavities) and mouth infections, such as candidiasis (also called thrush).
Sjogren’s affects other tissues and organs and has more widespread effects on the body that cause: Fatigue, joint pain, dry skin, muscle aches and weakness, skin rashes, poor concentration and memory problems, numbness weakness and tingling especially in extremities…just to name a few.
With many autoimmune diseases, no two cases are alike. I was not showing the typical dry eye and dry mouth symptoms. My muscles were getting weaker and my joints hurting like hell and swelling. I was having a lot of trouble walking. So it was hard to pinpoint exactly what it was until they did a full work up. And after my doing 4 different blood tests to make sure, this was my diagnosis with a few other nuts and bolts to make it more interesting.
I was lost, confused, had no idea what this was and refused to accept it because…Aries
I was determined to overcome this. But as time went on, my symptoms only got worse, and quick! Apparently, I was too complicated for my rheumatologist and needed help and guidance. By this point I am in so much pain collapsing onto the floor at the stores and at home because my muscles were giving up and I couldn’t handle the joint pain. My brain fog was getting worse and not during a migraine attack or a fibro flare. My allodynia was getting worse and I couldn’t stand pretty much anything brushing up against me so it was getting new everything from sheets, towels, shirts, and pretty much living in sweaters in the dead Summer heat. My skin was suddenly breaking out into these rashes all over and my hands and feet were turning white and purple. It started to affect my hair and nails and my sense of taste was affected. Me having an altered taste to my food especially dessert is a major malfunction.
I was freaking out. I was getting no help and my specialist has pretty much washed her hands with me. Time to call on the big guns. AKA the only doctors that actually help, my neurologist, dermatologist and my primary care doc. Between them they have been switching and trying what meds work best so I can breathe and walk as comfortably as possible. This path hasn’t been easy for me, as open as I am with you all, writing this isn’t easy. But I’m being really brave.
The reason I am writing everything from the beginning to now is because of awareness and loneliness. I don’t want someone else to go through what I am experiencing. This road has by far been the toughest, and most painful with no end because yet again, I picked up another incurable illness. I did join several support groups because my rheumotologist was no help and there I did find I wasn’t the only one not getting much guidance. I also found out that many were embarrassed to talk or mention they were diagnosed with this disease mainly due to the primary symptoms. I understand the discomfort because there are some who don’t even mention they battle with migraine disease so I 100% get it. But again, with these rare and misunderstood diseases, if we don’t talk about them, how are we to understand, find cures, find better treatments, or live a better life with them?
I can’t really talk about those who I have talked to because their symptoms are so dissimilar to mine, but my life has been completely turned upside down. I thought I wasn’t sure how I’d wake up with migraine, now I REALLY don’t know how I wake up because it’s either the pain in my arms is so intense I can’t move, or my throat is so dry I can’t even swallow, my saliva gets so slimy it’s cakey, my legs are so weak I buckle all day, I genuinely feel like Mr. Glass from Unbreakable(just minus the insane part though I wouldn’t mind his Comicbook collection) I have to use eye drops to moisten my eyes and if I have to use them too often I will need Sjogren’s eye therapy! What!? That’s a thing!?!
Every day I either find a new symptom or put two and two together. I sometimes feel like I am the only one who has it this bad. I feel alone at times because it’s hard for me to describe the excruciating pains. It’s like I’m battling Wanda Maximoff’s power of energy manipulation where she would have electricity running through her fingertips and how she controls electromagnetism….yes? no? Read that Comicbook? Well that is the best way for me to describe the way the pain travels through my muscles and weakens them. I feel like she has a hold on my body and isn’t letting go.
The take away is this, no matter how prepared you think you are for what life throws at you, you will never be ready. You can obe willing to keep fighting and keep standing tall no matter how many times you are blown back against the wall or how many times you’ve fallen on the ground that you are starting to leave a dent. There is ALWAYS something positive in every situation. I promise you. Surround yourself with those that are willing to be the light when you can only see the dark and those who will answer with “What can I do to help” and not the ever so annoying “You go this, you are so strong” card. Life already sucks, but if you stop and focus on that alone you are going to be miserable. Find the humor, it’s there. If not come find me. Last of all….YOU ARE NOT ALONE. EVER. Because I am sure there is a ghost right beside you. heehee
Thank you for coming to my TedTalk
-gelcys
Empire Unleashed 
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