*This is just an introduction piece I wrote for another site and I’m posting it here as well.
At age 33, I fell quite suddenly ill, not long after my happily ever after wedding to my amazing husband.
After some really tough years of a bad situation, I had gotten out, moved on, met my forever, we had just bought our first house. . .
I was also incredibly active and healthy, a nurse since 2003 and a mother of three and a marathoner to boot.
And. Suddenly. I. Could. Not. Breathe.
Granted, I had been in bed for a few days with some sort of flu-y exhausted thing prior to this (with my fabulous nurse immune system at that time, I was NEVER sick).
But still. . .
At that point, I finally went to the Emergency Room, only to discover I was so profoundly anemic that it was causing me to have a low oxygen saturation. I was in total disbelief.
When all was said and done and sorted out, I had a GI bleed. And the GI bleed was caused by Celiac Disease that had likely gone undetected for a very long time. I was both shocked and relieved. It seemed simple at least. I changed my diet and began improving.
My improvement was short-lived however.
By the next year, I began having tremendous burning in my knees, difficulty with my hands, and severe fatigue. I worked at an Urgent Care at the time and the physician I worked for began running labs and giving me steroid injections as well as oral steroids, basically to keep me moving. Assessing my symptoms and labs, he felt strongly that I had Lupus.
I was eventually sent to my Rheumatologist who added MANY medications as well as a diagnosis of Rheumatoid Arthritis. But we were never able to stop the prednisone.
And, over the years, the symptoms continued to worsen.
Hands, spine, right hip, knees, feet. . .
Then hell broke loose. . .
In January of 2017, I experienced my first stress fracture in my left foot from the years of prednisone. Off I went to the orthopedist. We reasonably expected it to heal – as stress fractures usually do. But it didn’t.
And then my feet began to crumble. One metatarsal after the other it seemed. By July of 2017, between my broken feet and my worsening RA, my Rheumatologist told me my nursing days were over.
I was devastated.
I was fortunate, however, to be able to go to Integrative Nutrition school online for a year then – which fulfilled a dream of mine and saved my sanity as well – as I certainly was not expecting the homebound life at 38.
The summer of 2018 saw me with three non-healing stress fractures in the metatarsals of each foot – and I am considered a “poor surgical candidate” so there is nothing to do but live with them.
I recall thinking, “This is the absolute worst.” That was a mistake.
It turned out worse was waiting in the form of a monstrously swollen left foot, the worst pain I had ever experienced in my life radiating up my leg, and skin so sensitive that even wind and slight cold couldn’t touch it.
I literally laid down for a nap in my usual state of health and woke up in that condition.
Welcome to early December 2018.
My husband rushed me to the Emergency Room, crying hysterically (of note, I didn’t even cry in childbirth with my third child, so nothing about this was normal), and they immediately gave me IV Morphine, which didn’t touch it. Then I was terrified. After about seven hours, the immediate horrific pain flare subsided but it was still a 7/10 on the pain scale.
It took weeks – and much guinea pigging by doctors – but I was eventually officially diagnosed with Complex Regional Pain Syndrome (CRPS).
It is still new to me. And it is still doing new things, like moving to my right foot and up my left leg and affecting my eyes.
And I am trying to adjust.
This is, by far, the most frightening of the things to me.
Celiac and RA are fairly predictable, even if RA is painful and difficult to control.
As a nurse, I understand those at least I think?
CRPS? It does whatever it wants.
My doctors are looking for answers and treatments and I am open to trying them all.
That is all there is right now.
And I am doing all of the things I know to do: praying, breathing, meditating, reading, writing, lots of self care.
I am profoundly grateful for the many good things that I have.
My husband and daughter are amazing and always look after me. I have an emotional support rescue weenie dog, Henry, who is always with me and I love him so. My bestie lives a few miles away and I am so thankful for her. Our family is absolutely wonderful. I always dreamed of being a writer and now I am able to do so and that is truly a gift. I have my faith and I hold on to it for dear life.
I cling to the good. Especially on the bad days.
I’ll be 40 in 7 days.
I’m still here.
I’m still fighting.
I still have much to do.
So, no matter what, forward.