In Destiny's own words:
"So here's what's up: A long while ago I was diagnosed with rare autoimmune disease- Beceht's, and along with it, conditions related or caused by the disease. So I'm very sick and deal with chronic pain all day every day from the disease and related conditions. My Beceht's comes with neurologic involvement that has damaged nerves, creating more and different pain, constant migraines, sometimes seizures, aphasia, etc...
I had to go into the emergency room two weeks ago because I was not able to pass water for over 8 hours and my heart was hurting. I figured the tachycardia I was experiencing and super high blood pressure was all due to pain. After I signed my name in the ER they admitted me on the spot, catheterized me, drained off over 2 liters of fluids, did the EKG, and found out why I've had trouble urinating for the past 2 years, and that something more was up with my heart. They admitted me to their ICU unit.
Apparently, my uterus is the size of a watermelon, and has every kind of fibroid growing within and on the outside. It's also twisted, moving my cervix to an unnatural location, along with stretching and moving my bladder to the top of my uterus, squashing it and cutting some circulation to my intestines so that I have to be catheterized till a bit after the surgery, and possibly forever. We have our fingers crossed that after the surgery and I get my first follow up that this won't be the case.
Anyway they said it all needs to come out immediately. This was a huge shock. Worse that Blue Cross Blue Shield considers a hysterectomy an elective surgery. Even though it's mortally interfering with other organs, and all the Docs agree I need surgery immediately
The insurance companies now supersede any and all my Doctor's knowledge and expertise.
While in the hospital, my heart continued to have 3 episodes ,one lasting from midnight to 6:30 am where I had 7 emergency staff hovering waiting to dive in if I went into cardiac arrest. The entire time I had someone always an arms length away doing tests, pushing pain meds, fluids, and all the regular heart drugs you get when your heart doesn't want to cooperate.
In addition, my body is really not making the white blood cells so in the hospital and at home everyone around me needs to have and wear a mask and constantly hand-sanitize and wear gloves when touching me. So I'm like the girl version of John Travolta in the "Bubble Boy" movie.
Anyway, I'm still sporting my summer accessories: the catheter and foley bag. Awaiting results on recent biopsies, hoping they'll be cancer-free so that it'll be the OBGYN doing the surgery instead of Oncology. After the surgery, it will be 6 weeks bed rest with constant care, and a total of 6 months to heal. They have some other things to figure out...my heart for instance, what to do about my ever-plunging white blood count that makes it unsafe for me to be outside the house around people, my body's inability to naturally absorb nutrients. Until the big surgery day, I'm doing what I'm supposed to be doing, trying not to stress, staying in bed resting, watching horrible things on TV, thinking and envisioning a positive happy future. Planning to be able to take in some of summer life. Having faith in the stars above that things will work out all across the board and I'll be back to doing some of what I love in life... teaching, painting, being in nature( without a chateter )laughing and being around and apart of the lives of people I adore.
I'll try to do a brief update after my follow up, depending on the results. I'll have Neal (Wilson) https://www.facebook.com/neal.wilson.79 post on surgery day.
If you want to help, I can use it. Just reach out to me or Neal. I haven't been awake a lot in the last few days so if you're reaching out please understand if responses are delayed. Everything is taking extraordinary effort and energy for me: moving, walking,eating, writing... I was supposed have home nurse care but my insurance isn't coving that or PT, not now or after surgery. So often it's just me doing my best to get around and waiting on Neal to help when he gets home. Not the "grownup" life we envision for ourselves.
I'm sending you all thanks, love, and happy healthy times for you and your loved ones. Thanks for being there."
- Scott Miller
- Rob Cash
- Stephen Walker
- Ann & John Rogers
Organizer and beneficiary
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