How Not to Let Chronic Illness Suck the Life Out of You: Part 1 of 3
7 ways to manage the frustrations of living with chronic illness
Updated a link to Part 3 April 27/22
Dear Readers,
Do you or someone you know experience a chronic illness?
If yes, you may relate to this story. If not, you may find the information helpful and applicable to any stressful situation.
Read on if you are curious.
Part 1 of a 3-part story on how I survived the frustrations of living with a debilitating chronic autoimmune illness called rheumatoid arthritis (RA).
But first, the disclaimer. This story is my personal experience only and not intended as medical advice.
Okay, so let’s get on to it.
For readers who don’t know, RA is one of over seventy-six autoimmune conditions affecting 4.5% of the world population, according to a detailed analysis report published in 2012.
That’s 35 million people worldwide. The sad part is autoimmune cases are rising between 3–9% per year.
Wow! Big Pharma must be in their glory, followed by Big Food. And we don’t even mention the vaccine subject.
Whatever makes the world go ‘round. It’s okay. We all have choices…I think.
I digress.
RA is an autoimmune condition causing the body’s immune system to be in a continual revved-up mode — as if it’s fighting a 24/7 invading agent — a bacteria, virus, or some foreign object that has entered the body.
The problem is researchers have not identified the invading agent yet, so they have decided that the body, for no apparent reason, is turning against itself — attacking its tissue, bone, organs, nerves, muscles, etc.
Luckily, immunosuppressant pharmaceuticals dampen this so-called body attack on itself, but there is a price.
Side-effects.
I was diagnosed roughly twenty-three years ago after experiencing a sudden onset of red hot swollen joints. Blood tests, a nuclear bone scan, and the swollen joints pointed to rheumatoid arthritis.
It was during a highly stressful second marriage divorce the symptoms appeared.
I’m not blaming the ex-husband, just stating the facts.
I remember being at the shopping mall (I wouldn’t say I like to shop, it must have been necessary that day).
I could feel my feet burning, hurting with each step I took. When I went to open a door, I couldn’t. My right hand was so painful, weak, and red hot.
When I got into my car, I couldn’t use the gear shift. My hand was screaming pain. It was like I had a nasty sprain.
Something was wrong.
The diagnosis took several months of tests and waiting time for an appointment with a specialist.
The rheumatologist prescribed one of the first-line RA treatment medications. A rash developed all over my body within days.
Onto a new medication.
The rheumatologist prescribed Minocycline, an antibiotic, explaining studies showed positive effects in the treatment of RA. I was already taking an antibiotic for skin flare-ups, and the Minocycline took care of two problems at once.
Four months into the treatment, I almost gave up. Complaining to the pharmacist one day about the stomach pain it caused and how I didn’t think the med was helping, the pharmacist said studies showed benefits occurred around the six-month mark.
He recommended staying with it, warning that Minocycline was less toxic than other RA meds and had fewer side effects.
Yes, but. Do we know the long-term effects of antibiotic use?
I stuck with it anyway.
The immune system quieted. Disease activity settled. I rejoined the gym; began working out again. I took ballroom and jive lessons and joined a singles dance group for fun. It was a wonderful time. I Loved Dancing!
The downside (there is always a downside)? Gas from the Minocycline. Sad, but true.
OMG, did I really say that?
Aside from the constant stomach burn, this gassy dancing gal enjoyed a period of slower progression in RA activity over the next five years.
Fatigue, overall body aches, occasional flare-ups in hands, wrists, and feet happened sporadically. Comparatively, this was good.
A little RA info is next.
RA is a degenerative condition affecting the whole body, including joints, tendons, ligaments, connective tissue, eyes, the organs of the heart, lungs, kidneys, blood vessels, skin, muscles, and nerves.
Before starting on the Minocycline, X-rays of my feet and hands showed aggressive joint damage. The Minocycline slowed it down, giving me five years of increased mobility and less pain.
The American College of Rheumatology and John Hopkins Medicine has more info on this autoimmune condition.
The story continues…
Those five years were the best in all of the twenty-three years living with RA. It sounds like I’m talking about a relationship with a significant other.
Yes, RA is indeed a constant companion, although a frequent archenemy as well, I’d say.
The GI (gastrointestinal) issues from the Minocycline worsened. The rheumatologist nudged me toward the next drug on the RA treatment protocol. Methotrexate.
I rebelled.
Hearing about this so-called ‘toxic’ drug, other patients advised staying away if possible.
The story continues in How Not to Let Chronic Illness Suck the Life Out of You: Part 2 of 3.
Thank you for reading! I appreciate it more than you know.
If you feel inclined, please leave a comment to let me know how this Part 1 reading experience was for you. As a new writer, I would love the feedback.
There are two ways to help support this developing writer if the spirit moves.
1. Read, clap up to 50 times, comment, or share my stories.
2. Become a Medium member through my referral link. $5/month or $50/year
Benefits: Ad-free, full- access to Medium authors and articles. Writers receive a small portion of the fee, helping to support their work.
