• 

  The look changes. The diseases do not. On the left, in my natural habitat. On the right, after spending energy to “clean up”. Oh, and sunglasses hide a lot. 😉

  Rheumatoid Arthritis is one of 100+ types of arthritis.

• But it’s also not “arthritis”, as I knew it pre-diagnosis.
• Yes, it’s joint inflammation, immobility, and deformity.
• But it is not cartilage degeneration, like osteoarthritis.
• Which is common starting in middle age.
• RA is an autoimmune disease.
• This means my body is attacking itself.
• Specifically, the lining of my joints.
• RA can be systemic, which means it shows itself well beyond the joints.
• My eyes, lungs, heart, and autonomic functions are all impacted.
• And RA affects people in every age group.
• Including over 300,000 kids in the US.
• I’m always in pain. Like, 24/7.
• But the fatigue, both from RA and fibromyalgia, is sometimes just as hard to handle.
• My outward appearance generally doesn’t match how I feel.
• I evaluate every task, every day, to determine whether to perform as normal, perform with modifications, or skip.
• Yes, this includes showers, which zap my energy.
• Some days, I can manage a short one in the evening before bed.
• Some days, I can’t.
• I contemplate my toothbrush twice a day.
• Sometimes, I can’t manage the back and forth motion required for my manual brush.
• Other times, the vibration of my electric toothbrush is unbearable.
• This constant evaluation is mentally exhausting.
• Fatigue does not mean “in need of a nap”.
• It’s limb heaviness.
• It’s brain fog.
• It’s like having a bad flu, constantly.
• At least once a day, I break down in tears because of the pain.
• Pain keeps me from sleep 3-5 nights a week.
• Opioids do not take it away.
• Most days, they dull the pain.
• And are necessary for me to function at all.
• I use them in combination with other therapies and treatments.
• So don’t be surprised if I smell like menthol.
• It’s just the Bio-Freeze.
• Medical marijuana is not legal where I live.
• But it’s on the ballot again.
• I’m scared that millions of chronic pain patients like me are getting lost.
• While we debate the serious and separate issue of opioid addiction.
• I have a permanent disabled parking permit.
• Which I only use when I need it.
• I have received angry stares and comments because I don’t “look” sick enough to have one.
• If you have heard about a treatment, I have tried it.
• Yes, this includes medications, alternative therapies, diets, protein shakes, vitamins, balms, and yoga.
• Even if it worked for your mother/sister/uncle/grandpa/spouse/roommate, autoimmune disease affects everyone differently.
• And though I use some of them, my diseases continue to be mostly unresponsive to treatment.
• Save the unconditional love and support of my wife and son, a treatment that work wonders.
• Despite all of these challenges, I try to stay positive, especially online.
• I share photos of wonderful vacations I take with my wife and son.
• But I don’t share the activities I skip to rest in bed.
• Or the number of days I cannot even bear to get out of my pajamas.
• The same goes for work, entertaining, date nights, soccer matches, and well, everything.
• Many days, my bed is both my office and my dinner table.
• And my computer and TV are my views to the outside world.
• So I often feel apart and alone.
• If I cancel plans we’ve made, it’s because I’m in really bad shape.
• It is never because you are not important to me.
• And it breaks my heart that you might think otherwise.
• That you might stop inviting, stop calling, stop writing…
• I want to do everything I could do before I was diagnosed.
• But I can’t.
• And resetting my own expectations is the hardest task of all.
• I often feel guilty saying “no”.
• I often feel like a failure when I can’t do what others can do.
• Seven years in, I’m starting to accept that I need a different balance.
• “No” allows me to be better in control of my chronic life.
• So my disease no longer controls me.
• It’s hard, and I’m far from perfect.
• But no matter what comes, I plan on enjoying the hell out of this crazy, beautiful life.
• As it is, not as I wish it was.
• For as long as possible.

Thank you for listening. Namaste.