Here’s How I Deal Every Day with an Autoimmune Disease
Hello there. If you clicked on the link you saw on Facebook or Twitter, then you probably have some interest in what I'm about to say. You might even know me and are kind of shocked to learn the following about me. One of my co-workers whom I have known pretty well for six years had no idea I carry a pretty serious medical condition with me. I figured if he didn't know, there's a good reason. And, there are probably a lot of people out there who are looking for the same answers as me, or at least a kindred spirit to make them feel not so alone in this world.
I'm the Digital Managing Editor of Townsquare Media Evansville-Owensboro. I basically help run the radio station websites and provide support to DJs - online, on-air, and on site. Sometimes I share pretty personal stuff on the radio or in blogs, and I'm okay with that. I figure - if I'm going through this, someone else is too. And, in fact, things that we think are weird are sometimes the norm. Why should we all feel weird and alone? That's just stupid!
What prompted me to write this was I had a serious doctor's appointment this week that stressed me out a lot. I went in to find out of if my eyes were under attack. Just the thought of losing my eyesight or the ability to wear contacts frightened me. When the co-worker who has had the office next to mine for the last six years asked about my appointment and I gave him the rundown he said, "Wow, I had no idea you had all that going on. You'd never know..." He's right. You wouldn't know now. I'm a pretty active mom who barely misses work for illness. That wasn't always the case though.
About eleven years ago, I was diagnosed with an Autoimmune Disease. I found out that my immune system - for unknown reasons - thinks of my body as the 'enemy' and attacks parts of me like it would a virus, bacteria, or other foreign object in my body. Autoimmune diseases come in all shapes and sizes - it can attack your skin, joints, muscles, nerves, or even hair follicles! I mean what did a hair follicle ever do to anyone?!
My immune system doesn't discriminate. I was diagnosed with Mixed Connective Tissue Disease. One day, I woke up feeling like I was aching from the flu. But, I never got sick and the aching got worse. I was also tired. Not just 'I need a nap' tired but I am on the brink of death tired ALL THE TIME. I was sleeping 15-18 hours a day. My hands and feet were like ice all the time. I was... sick. Really sick.
I went to the ER where the docs found out that I had an elevated SED rate. It was SERIOUSLY high. After rounds of tests and specialist visits, my former Rheumetoligist diagnosed me with Lupus but I was later updated to MCTD.
Mixed connective tissue disease (MCTD) is a rare autoimmune disorder that is characterized by features commonly seen in three different connective tissue disorders: systemic lupus erythematosus, scleroderma, and polymyositis. Some affected people may also have symptoms of rheumatoid arthritis. Although MCTD can affect people of all ages, it appears to be most common in women under age 30. Signs and symptoms vary but may include Raynaud’s phenomenon; arthritis; heart, lung and skin abnormalities; kidney disease; muscle weakness, and dysfunction of the esophagus. The cause of MCTD is currently unknown. There is no cure but certain medications may help manage the symptoms. -aarda.org
So, my immune system went after my muscles and thyroid first. Left untreated, my immune system could kind of "eat" through them. Gross, huh? I later found out that my achy feeling was called polymyositis. I found relief in high doses of steroids because the steroids suppress my immune system and relieve inflammation. I looked like a puffed up toad. So, what was I to do? I couldn't stay on high doses of steroids for long. Here is my biggest issue - the "treatment" for immune disorders is immune suppression. Guess what happens when you suppress your immune system... it can't fight off all the other illnesses and ailments you run across. So, then your body begins acquiring the mashup of viruses and bacteria that you can't fight; you are forced to add anti-virals and sometimes antibiotics to your already heavy duty "cocktail" of medications.
One might think, since immune diseases affect 50 million Americans, 20 percent of the population or one in five people, there would be more answers about why our immune systems are attacking us. Is it genetics, environment, or both? And, you would think that since autoimmune diseases have been cited in the top ten leading causes of all deaths among U.S. there would be something that could improve or even cure this condition but my doc always assures me that there's not and no miracle drugs are in the works. So far, for me and several people who I've spoken with have only been given immunosuppressive and maintenance medication which means a lifetime of chronic pain lies ahead.
I have been on Prednisone for 11 years now. And, when I accidentally miss a dose, I flair. My whole body goes straight back into that feeling that polymyositis state and I ache all over. And, even when I don't miss a dose, I flair. Life SUCKS during a flair... I hurt ALL OVER, I am so tired, and all I want to do is just fall off the face of the earth. My body is literally attacking me and there's NOTHING I can do about it.
Well, I used to think there wasn't anything I could do about it but I couldn't stand not living my life and I took matters into my own hands. Now, if you have an immune system problem, please talk to your doc about anything I'm about to tell you. These are things that have helped ME. And, I hope they help you too!
Sorry, but if you are eating junk food all the time and using your condition as an excuse to be lazy - STOP it right now! I had to completely overhaul my diet. Whole grains, organic fruits, vegetables, white meats, and healthy oils dominate my diet. At first, it sucks - but it helps.
Don't even try the high impact work out yoga unless you are conditioned. Low impact hot yoga is my favorite. High impact will push me right into a flair. Yoga is a game changer though - it has helped me so much to release toxins and stretch out the tendons that pull on my muscles. Yoga also reduces stress which worsens the immune response. STOP STRESSING!
Drink lots of filtered water and a glass a day of green tea - lay off everything else. #saynotosoftdrinksfriend
Can the weird junk and stick to the basics. I take coconut oil, vitamins C and D, fish oil, and magnesium. They help to reduce inflammation naturally. I'd say these help me as much as my medications - that's how strongly I believe in them.
5. Massage and Chiropractic Care
Learn what types of massage help your condition. I have to use a therapist that has training in muscle diseases but it is so helpful. If she's was too deep, she'd seriously hurt me. And, a trip to Dr. Sanders, my chiropractor during a flair is one of the MOST important things I can do for myself. It's instant relief!
6. Rest but Not Too Much
Before I had a daughter, I allowed myself to sleep as much as I wanted. As a person who has these issues, my body will sleep and sleep and sleep. I have to get a lot of good rest to recuperate (7-9 hours) but I have found anything beyond that works against me.
7. Rest Your Body and Mind
I have to force myself to veg out. Resting my mind keeps me balanced and improves my overall wellbeing.
8. Educate Yourself
Don't rely on your doc to fix you. Don't rely on medications to fix you. You have to work at this every day and educating yourself on everything from nutrition to medical advancements is so important.
9. Just Keep Swimming!!!
This is my mantra. When I get so deep down into the depths I can't see sunlight, I repeat out loud, "Just keep swimming!" I push myself to go into work every day. I push myself to do physical things with my daughter. I push myself to keep "swimming" because there was a time in my life when I didn't and I just fell further and further down. Pulling myself back up is even harder.
And, don't get me wrong, I have bad days. I have days that I have no energy and getting out of bed is painful. Some days, my hip hurts so badly I can barely walk. I am 35-years-old and my hip hurts... so that's really weird and honestly it's depressing. And, I never know what my immune system will attack next. But, I keep swimming! And, I hope you will too!
The Autoimmune Research Network (ARNet) helps empower patients by facilitating their participation in research on autoimmune diseases. ARNet is a program run by the American Autoimmune Related Diseases Association, Inc. (AARDA) in collaboration with the Patient Advocacy Groups (PAGs) like the AARDA. This survey collects information about you and your autoimmune disease(s).
The information you share with the AARDA will be stored securely and no identifying information will be shared with third parties. Only the anonymized data will be made available for researchers to query. You can opt in to participate in research and the AARDA will inform you about opportunities.