Diagnosis Not Unknown

If you are here, you either know me or you know my mission – my mission being an advocate for women’s health and self-care practices.

Because of my activist-heart, I work daily to be transparent. Sometimes, my husband has to pull me from the depths of my habitual “overdoing” to do so – as I have the pattern of breaking before I remember to bend. I share the story that never ends. It is a story of being a woman and a mother who has fought for her health almost twenty years with more “possible diagnoses” than even I can count.

As I child, I had intense pains in my joints. It was labeled as juvenile arthritis and spondyloarthopy. In college, I caught a virus. Most likely it was mono or the like. I slept for a good month, but certain strange events happened as I healed. The most memorable being that every time I sat up from bed, I would black out. A year or so later, I was having regular bouts of pain, fatigue, nerve changes, dizzy spells – the list went on and on. At various points, I was diagnosed with seronegative rheumatoid, lupus, and often told that I had a high likelihood of a muscle or neurological disease like multiple sclerosis.

In January, after a decade crashes (or flares as I’ve called them) and easier times over and over again, I claimed Fearless Health. This would be my year of healing. And, well, I guess it has just recently become that! I was blessed to be one of 4 appointments a year that Mayo Rheumatology would consult on. Additionally, I was given consults with Integrative Medicine, Physical Therapy, and Podiatry.

Round 1. I don’t have any of the markers for a rheumatologic disease. I cry (again) because it sucks not knowing why you feel so awful. I am sent to Physical Therapy as they note I have severe hypermobility which has caused some osteoarthritis in my hands, knees, and ankles.

Round 2. Physical therapy is AMAZING. But more exhausting than I ever thought that it would be. Like crazy exhausting, where the next day I can’t function. Apparently, that’s not normal. I cry some more. I am HUGELY blessed to work from home with an incredibly supportive spouse – but I want a normal life. The normal life a post-postpartum depression and anxiety mama craves. Who doesn’t want a normal life?!

P.S. PT says I should fully recover mobility (like long walks and strength training) once we build enough muscle to support all of my hypermobile joints. That’s pretty cool… but…

Round 3. My world is turned upside down. All of my decade-long symptoms are read. Diagnosis is officially made through Mayo’s specialty departments. I am told that I have SEID or Systemic Exersion Intolerance Disease, formerly known as Chronic Fatigue, and now recognized as a neuroimmune disease. I’m not just tired.

The condition, which can render people housebound or bedridden and unable to work or go to school, is believed to affect between 860,000 and 2.5 million Americans.

The symptoms and signs of systemic exertion intolerance disease are relatively specific:

increased malaise (extreme exhaustion and sickness) following physical activity or mental exertionproblems with sleep, difficulties with memory and concentration, persistent muscle pain, joint pain (without redness or swelling), headaches, tender lymph nodes in the neck or armpit, sore throat, brain fog (feeling like you’re in a mental fog), difficulty maintaining an upright position, dizziness, balance problems or fainting, allergies or sensitivities to foods, odors, chemicals, medications, or noise, irritable bowel, chills and night sweats, visual disturbances (sensitivity to light, blurring, eye pain)depression or mood problems (irritability, mood swings, anxiety, panic attacks)

CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD), and similar chronic conditions. For most patients, CFS significantly limits their work, school, and family activities for periods of time.

Welcome to my world.

A decade of symptoms and shame.

Ten + doctors.

Four states.

One diagnosis – NOT unknown.

I am pretty teary today… for so many reasons: I’m TIRED (let’s laugh about that symptom, for real!); I am thankful that I work on my time and not on someone else’s; and for the first time in my adult life… I know why I feel pretty dang awful. I am teary because of all the moment’s that I have been made to feel less than (by others and by myself – let’s give credit where it’s due) for my inability to do as much as they could. I am also teary because I know that God’s got this. He’s known all along how my body works and He asks me to pause time and again – which I childishly ignore. (I think I’m going to listen now – in case you are wondering.)

And finally, I am teary because I know that if God’s got this – I’ve got this. I have work to do. Big work on me and my relationship with life, big work to spread the message that we are ALL worthy of healing, and big work to teach that a “new normal” is OKAY. Actually, I bet it can be downright amazing.

Thank you for listening. I know that this is long. I also know that I couldn’t keep it in… how can you celebrate a moment this big (Diagnosis Not Unknown) if those you love aren’t celebrating it with you?

So, if you feel the spark… celebrate with me today. I’m not the only one out there on this road, and I pray to not be the only one spreading awareness either.


Mama J.

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