Heart To Heart Thoughts From Inside My Chronic Life

  • bedvsout-selfie

    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.

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6 thoughts on “Heart To Heart Thoughts From Inside My Chronic Life

  1. Rochelle says:

    Amazing to show and provide people insight on what this disease does to effect your every day life. You are incredible and I’m in awe of what an amazing mom, wife and friend you are. We all love you and know that sometimes daily life is a struggle. But even a low end day for you my friend is still full of life and energy for others in what you bring. Love you! Rochelle

  2. Johnny says:

    As someone dealing with the daily battle of Rheumatoid & Psoriatic Arthritis myself, I wanted to let you know how much I appreciate this articulate description of the challenge that we face every day. Leading with “RA is not Arthritis” was one of the most impactful statements to me. I don’t know how often I have been asked if my arthritis was caused by the fact that I am overweight and “causing the additional wear on my joints.” While I recognize that any weight loss will certainly help with general health, this mischaracterization of what causes my symptoms is frustrating. It’s my body attacking itself not the kind of arthritis from years of wear and tear on the joints.

    The other point in your post that hit home was around the looks you get from others when you use your handicap spot. I see that often when I need to sit down in a crowded space where there are not enough seats. As a male, if I take a seat when there is a female left standing, I am viewed as disrespectful and not chivalrous. The reality is that I pride myself on my kindness and consideration to everyone and I feel guilty taking this selfish stance (or seat in this case)…but sometimes I just have to do that.

    Thanks again for these great words and the reminder of how many other suffer from this gnarly disease. May you find extra spoons each and every day, my friend!

    • Johnny, you are one of the kindest, most caring people I know. Sending you lots of hugs and spoons, today and every day. Thanks so much for reading, and for adding your thoughts! ❤

  3. EM Talbott says:

    You’ve encapsulated so much of our shared Disease perfectly! I was visiting my parents recently and my own mother dismissed RD, saying that ‘everyone had it’. Ugh.

    Thank you! 💜

    • Thanks so much for reading! That is so tough. I know people generally mean well, but I wish they’d ask questions and try to understand, versus making assumptions. And that’s my goal with this blog…raising awareness. I hope today is a good day for you…sending extra spoons!

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