Saturday, February 2, 2019

Living with an Autoimmune Disease

Hi, friends.  Today's post has nothing to do with teaching, but is a part of me now.  I wrote this post to spread an awareness about Rheumatoid Disease (Rheumatoid Arthritis).  If you also suffer from RA or any other autoimmune disease, please know that you are not alone.  



In June of 2018, I was diagnosed with Rheumatoid Disease. Rheumatoid Disease can also be referred to as Rheumatoid Arthritis.  Rheumatoid Disease is an autoimmune disease that causes chronic inflammation of the joints and sometimes the organs. It happens because your immune system decides to attack the synovium, which is the lining of the joints. It affects any joint in your body: elbows, feet, hips, jaw, knees, neck, ankles, shoulders, and wrists.  As the disease progresses, cartilage and bone are damaged and destroyed.  Eventually the supporting tendons, ligaments, and muscles weaken.  This leads to a limited range of motion and difficulty moving.  In the long term, joints can become deformed. 

There is a lack of understanding about the disease and that is why I am choosing to share my diagnosis and daily experiences with it on here.  When someone hears “Rheumatoid Arthritis,” they think of their grandma’s arthritis which is generally caused by old age and old joints.  However, RA is not just "arthritis."  Arthritis is one symptom of RA.  Approximately 1.5 million Americans of all ages suffer from RA.  It is much more common in women than men.

RA is a very difficult to diagnose and often takes years.  The signs and symptoms mimic other diseases.  The diagnosis involves working with a rheumatologist who takes blood work, X-rays, ultrasounds, and gives a head-to-toe physical exam.  Once diagnosed, the rheumatologist will prescribe a plan for you.  This typically involves the prescription of heavy medicine, similar to those used in chemotherapy.  In June, I was prescribed medicine but declined it.   I would rather fight through the pain and fatigue and risk joint deformity vs. putting such a strong and foreign substance in my body. 

Living with RA is like a roller coaster ride.  Some days I feel pretty good, meaning just one or two joints hurt.  Other days, I experience any or a combination of the following: stiffness, body ache, shortness of breath, pain in specific joints, migraine headaches, swollen and red joints, or extreme fatigue, just to name a few.  Some days I can’t open a bottle of water.  Some days I can.  Some days I can go up and down the stairs in our house just fine and others I literally crawl up them to go to bed because my knees physically won’t work.  Some days I wake up and feel as though I've been beat up in my sleep.  Never do I wake up feeling "refreshed" after sleeping 10-11 hours.  I am always tired, always fatigued.  Some days I can't form a sentence correctly due to brain fog, which is inflammation around my brain.  Other days I am well-spoken.  Sometimes my feet hurt so badly I have to wear flip-flops in single digit temperatures in Ohio.  Most days, I can not bend over to put my shoes and socks on and have to sit down.  Getting dressed now takes me much longer than it used to, due to the stiffness I experience in the mornings.  I can't squat down next to a desk of a first grader.  My knees are in excruciating pain if I do. I also can not sit on the floor with my first graders.  I am physically unable to sit "criss-cross..." my hips simply will not do it.  RA is constant ebbing and flowing.  I never know what I am going to get.  The constant uncertainty takes a toll on my mind.  I never stop thinking about my body.  I’m always “checking in” and am hyper-aware of my joints.  

Anyone that knows me knows that I love to keep busy.  I also like to do everything myself and not ask for help.  This disease has forced me to cut back on blogging and creating things for my Teachers Pay Teachers store, saying no to social events on school nights, and cutting back on extra committees and events at school.  It has forced me to slow down and made me ask for more help at home. It has forced me to prioritize self-care.  My diagnosis was a wake-up call of sorts; I had dedicated my entire, 15 year teaching career to teaching, working almost every evening until dark on things for my students and my classroom.  That has absolutely slowed down and not by choice.

I have always enjoyed exercising, but now it’s more of a prescription than anything else.  I HAVE to exercise to keep my joints lubricated.  Sitting for long periods of time makes things worse.  It’s a catch-22 because when I am tired and fatigued after teaching first grade all day, I want and need to rest, but I also have to keep my joints moving.  I work with a personal trainer to make sure I am doing my weight-lifting exercises correctly, as to not cause further damage.  I attend cycling classes because cycling is great for my joints.  Monthly medical massages are now part of my life.  I go even when I don't want to take the time or spend the money on them.  

Because I have a compromised immune system, I am prone to getting sick more frequently.  It also takes me much longer than an average person to get over an illness.  This is because my body is confused and is attacking itself vs. attacking the infection or virus (flu, cold, etc..) that I have.  I am constantly washing my hands, sanitizing my hands, or wiping something down with a Clorox wipe.

I take more vitamins and supplements than you can imagine, in an effort to help with the pain and fatigue.  Each morning, I take 5 various vitamins and each evening I take 5 more, different vitamins.  I have also had to switch my diet up...limiting my sugar, eliminating red meat, and incorporating anti-inflammatory foods into my meals.  I've had wrist surgery.  I've had shoulder surgery.  I've had injections into my feet and hip due to pain.

Thankfully, Mr. Wheeler has been beyond amazing at home.  He has always been very helpful, but now he assists with even more things for us and I am so grateful for that.  The future is scary but I am taking things one day at a time and trying not to let my mind think about the what-ifs.  

Thanks for taking the time to read this.  I hope that I have given you some knowledge into Rheumatoid Arthritis.  Below are some fast facts about the disease.









xo
Megan

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