March 2, 2018
I’m so very scared
A silent foe lies in wait
Within my soul
I slowly die inside
Wrought with agony and pain
Scared for tomorrow
Will I make it to that day?
Or just fade away……
Absolutely no way!
I continue to fight and vibe on my way
When we face our shadows
They all fall away
And we are like the stars shining so brightly, nothing can ever take that away
Now I feel hope and resilience
In the face of my fate ~Jennifer Steen
10 days was all it took. From ER to truly the sickest I had ever been up until this point. It started with a headache that never went away……to save considerable time I am going to list the symptoms that followed, I wrote this list while in the waiting room at BSA
*excessive underarm sweating and dark spots
*dizziness and light headed which led to numerous black outs and a nasty concussion
*foggy memory and forgetfulness
*neck stiffness, swollen throat
*deep painful all over body ache(like a full blown flu)
*tingling hands and feet
*on and off fever
*trouble falling asleep
*sensitive to meds
*heart racing feeling with sweating and chills
*rapid weight loss
*skin changes on my face and legs, large red patches that burn when exposed to sun or lotion
Six weeks. That is how long I lived like this. In a blur, a realistic soul sucking abyss.
“Yet out of darkness was this gift, of vibes and rythmes. Of sight you can not see and words which you can not hear. Touch that you can not feel yet moments that came alive”. ~Jenn
So you can see while reliving the memories, I have gained perspective on the situation. Makes it tolerable to endure when something hopeful and optimistic can come from it.
They ended up telling me what I already suspected, it was an endocrine issue and there was nothing they could do, they tried giving me morphine but I had a horrible reaction to it and thus solidifying that I would no longer take prescription meds to handle my pain. My body was shutting down slowly and it was only a matter of time, I knew if I did not figure out what was wrong that I would not make it at the rate I was going. It was time for a change and to get down to the bottom of what was happening and why.
I was referred to an endocrinologist and that is where I started to get some answers. He originally thought I had Addison’s disease but turns out I have something even more rare. Hyporeninemic Hypoaldosteronism, meaning my kidneys do not make enough of an enzymes called renin which decreases the aldosterone in my adreanal glands. This disease is seen in people with chronic kidney failure and end stage cancer, I have neither. Leave it to me to be difficult huh? I have had numerous scans and tests and so far nothing else has came up. I take a steroid twice a day and it has helped thank goodness! Hoping after my neurologist visit, I can find a functional medicine doctor to run more extensive tests. I have chronic kidney stones and rashes that pop up and then go away. I tested negative for lupus. So far no thyroid disease put I do have a goiter on my right thyroid gland. I have also been experiencing slurred speech, balance and memory issues, and stomach problems. I am still fatigued and sick often but it is getting better with proper rest, food, and a positive mindset!
I will be coming back and updating as I get information and of course I will share how I am feeling from time to time. The support and love for me and my family has been a blessing to us and we will never forget it, thank you all so much!!