Destiny's Medical Fund
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."
I'll be truly glad to never go through that gruesome procedure again!
Today we had a super early appointment, where two very kind a joyful ladies took lots of blood, gave me instructions for the evening before the surgery, and the morning protocol we're to follow before we arrive at 5:30am. Who informed me my surgery might help other women. I'm all for helping people not suffer.
They also gave me a new fancy bracelet that has all my info on it for Monday's surgery that's waterproof and I get to wear everyday till I have the surgery and am discharged.
This morning we had a fiasco as I very painfully pulled the catheter out from myself. So.., Ouch!!!! Your not really supposed to have accidents like that, or do that. Ouch...so we've got some major pain and issues from that region we're dealing with. It's a new adventure everyday!
Besides that,fingers crossed; everything seems to be moving forward.
I'm hoping I can get some sleep the night before. I've been waking every night at 4-5am with night terrors. Trying to not wake Neal so he can get some rest before work.
But your prayers, love and support are all working. We have the Care Calendar up, if you want to sign up to help after the surgery, email Neal and he'll give you a login code.
We still have a lot of funds to raise; the GoFundMe campaign is still up. Every dollar is a huge help, and if you can share the campaign on your page that's a huge help, too.
Neal is talking of holding a benefit concert to help raise what we need. And I have some art I can contribute for an auction, so hopefully that will help get us where we need to be, as there will likely be surgery to follow, a heart specialist among others, with medical equipment and all sorts of things I'd have never guessed. And you all have been amazing, in sharing my story, sending love, and have already done so much to get me almost a quarter of the way there! So a huge thank you, and hugs and kisses for that.
Hello everyone, I've wanted to up date and let everyone know what going on, but so far all I've been able to do it lay here in pain, and fight through nausea.
We've raised the med fund goal as we got the surgeons and operating teams fees for the operation. Their fees stand. So far Kennestone has a fee they require to secure the room for surgery that we have to pay upfront, but the rest they will work will us on the remainder with a payment plan. Besides the help you've all contributed they're the only institution to offer help. We are still waiting a formal denial letter from BCBS, so we personally can appeal. So while they've said no to the hospitals and doctors, we need our letter to take further action.
It's not helped by the fact that the Uterine Torsion I have isn't a listed procedure. It's so rare that from 1867 till now there's only been 200 human cases, mostly with pregnant woman. So it's still in BCBS opinion a straight forward hysterectomy, even though this is actually a life threatening condition. Thanks BCBS.
Anyway more on that later.
You all have been extremely generous in so many ways. If you can share my go fund me campaign, every dollar will help.
If you can lend a hand after the surgery we now have the Care Calendar up.
And if you can only offer prayers and love, that's huge and I need all I can get.
Thank you all so much!
I'm going to leave this here without spellchecking or grammar. I'm sure Neal will come by and spruce it up.
I've realized that for the next 6 months I'll not be able to work, yet the bills keep rolling in, and I've cut all frivolous things that one doesn't need to survive. Sold my clothes, shoes, and purses of worth, sold my art at bargain basement prices (this one is the hardest) at not but a quarter of their worth. And road blocks from the insurance company come in pushing back the surgery. The insurance company stops payment to my two main specialists, and the blood labs the docs order monthly to check on my liver, kidneys, red & white blood count, inflammation levels. These are an insight to how I'm doing or if I need a intervention like a blood transfusion or intravenous food since I can no longer absorb nutrients though eating. These labs that help keep me safe and alive! It's scary and the disease is horribly painful; the uncertainty of so many things causes great anxiety.
That anxiety can be further debilitating and it's useless. So I do one of the few things for myself that I can being stuck in bed, within the same 4 walls... and that's to take stock in what I do have. Even the smallest thing is a blessing... I'm thankful for the hugs I got today, all the love, the dog kisses, the food we ate, and this one is the biggest: I'm still here, there's more time.
I go about my precarious life and circumstances, amid the political climate that threatens ethnic Americans, women, kids and the education they're owed, teachers, elderly Americans, the LGBTQ, healthcare, our environment, people that are ill, our constitution, and so on. I feel it's a sad time in America with our citizens, our friends at odds with each other. It serves as a reminder that it's not us versus them and their ideas... it's only us and our country.
It's a huge gift and blessing to have Neal open up FB and read to me all of your well wishes, the prayers, love, donations of any kind whether it be time, a hand, or anything towards the medical fund. It's been an elixir; it's restored my faith in our country and in people. The huge show of love, support, and compassion, whichever way you've chosen to express it, has been uplifting and deeply felt. There is hope. it's been the greatest unexpected collective gift you've all given me.
Thank you all so very much.
I've been radio silent a few days since this past Friday's hospital visit. Mostly I've been trying to sleep though the pain and endless migraines, and my catheter isn't working properly.
Dana has the care calendar ready to go and we'll put it up as soon as we get a surgery date. My biggest worries are that they keep adding surgeons to the surgery, the cost, and that they'll schedule it to be around the 4th of July holiday and no one will be around to help or join the care calendar. The pain is mounting and the more time that passes I'm getting more ill. So send me some really good vibes that things will hurry along, that it'll work out and I can get to the healing part. I really believe in positivity.
You all have been so amazingly generous: contributing to the medical fund, offering to join the care calendar and sending so much love and blessings. I don't know how things can't get better with such community and spirit. Thank you all immensely! Neal, Mr. Pickles and I are sending you all love!♥️
Please, if you've made a donation include your address so I can thank you. I'm old school that way. When people have been visiting it's both wonderful and exhausting because I'm forever stuck in host mode, even though I can't really host or even do for me right now. A few friends have said this isn't necessary, that just a mass thank you to everyone is fine. So if you don't want a friendly letter in your mail box along with the junk and bills you don't have to include it. I'd love to sell it and say "but it'll be a painted thank you card", but the truth is I can't hold a paint brush steady or sit up long enough. So it'll be a manufactured card but with a sincere thanks inside
I'm still trying to catch up thanking everyone who has sent love and/or contributed to my GoFundMe, but I get tired easily, so if I haven't thanked you yet or if I somehow miss someone, please know you are loved and appreciated!
I didn't know I could update you all from this app. I just downloaded it. I'm going to figure it all out♥️