I had somebody reach out to me recently, for that I am very grateful. She reached out to me because she is at her wits end. I mean that. She has Crohn's disease, has had two massive heart attacks, lost all of her teeth due to prescription medication and treatments she has received. She's incapacitated and alone. The one thing that helps ease the pain from Crohn's disease is cannabis. She lives in a non-medical marijuana State and is not able to get it legally. Her family was helping her get it, but has stopped. The only way I thought I could help is by giving her voice here. So, I asked to write what she's going through. I felt that it not only might be therapeutic for her, but maybe she can get the medical help she so desperately needs.
My story: At 24 my doctors were negligent of months-years of constipation, nothing could end it, which ultimately led to many dismissals from the ER until I came in with a rising temp of 104°. I was finally kept overnight where they streamlined soap suds enemas into me, and around 3Am, "something" happened. The "look and see" peek through the belly button, trying to keep it simple, was not scheduled until close to noon the next day. Sigh. When that time came, "a peek," took 9 hours. They weren't expecting what they found. Findings included 5 rock hard fecaloma, otherwise known as stool balls, so black and rock hard, unable to be sliced with a knife.. Calcification from them was spreading through my organs.. I went septic. Oh, and I got a lovely parting gift! A reversible colostomy (scares me to say a thing about) that I'm still waiting on reversal because I'm too complicated for one, still. Why? The last to work on me in this Hell Hole of a town could not give my parents any hope, yet had compassion enough to make a call. He had an "in" with UPMC Presby ICU. 13 minutes in a helicopter, while they discussed which organs could go if needed, and I was there. I'm quite small, but nothing really sedated me or eases pain. WHY? I'd like to have that studied! So while there, they tried, but everything that could go wrong did. All disease and virus, infections, such to where I could not be touched or moved because I'd code. My stomach could not be flushed with pure saline etc., enough, so I was there on respirators in a semi lucid coma for 7 months. 30some chest tubes in and out and belly drains.. Out of body roaming, in my body without being able to speak, and watching it. Center for Disease Control used up all they had in stock and everyone told my parents they could not give false hope. This is hard to "type" about. I went in 2004, and woke 2005, confused. I could move my head a bit but I could not speak because of a trache. Supposedly at signs of my waking, they hurried to transfer me from a masked respirator and gave a trache so I'd not wake with the scary mask. I had been put on a special machine to try to help. It was an oscillator, oscillating ventilator. Mainly for babies yet never used, they thought that the 560 breaths in AND out in a MINUTE might work like butterfly wing contractions, such is what occurs before their wings open.. So to open my lungs. I laid on a flat table vibrating. X-rays of lungs showed NO viable traces of tissue, and that was it. So to continue when I woke, I was freaked out. Someone could read lips, and I asked how my dog was. Gone, but only because YOU WERE A VERY SICK YOUNG LADY<- All I ever heard. And I had rescued him but he listened to no other but they found a great home eventually, thank God. Loudly and slowly, I was told where I was, and my parents' faces had me concerned. Enough! I told the nurse that I would like to rest, please. She got rid of people and turned the lights off, though I thought I was moved into another room, and she put on music because she said I liked it. Comfortably Numb by Pink Floyd began to play, and I turned my head to the wall in fits of tortured crying. I was thinking tivmyself, I finally get it now. Turns out that the medications alone were enough to kill me. Coming off of those paralytics etc., answers why my displacement and hallucinations occurred. I should be a vegetable that recognizes nothing. THEN I slowly came to move my right hand, left side, forget it. I was there a few months more before being transferred to an acute living care facility across the way. When I got there, my main surgeon who took me had a talk with the admitting nurse. I heard words like, "due to a stroking," and was like, WHAT!? I'd volunteered with a woman who had suffered strokes but she walked and did have her problems, but nothing to where I WOULD EVER THINK OF IT! I asked my surgeon to please stop and answer a question. Did I have a.. A STROKE? I could faintly be heard as I progressed traches, but I could talk at last. He shook his head and asked me that, I didn't know? My parents didn't tell me? TELL ME WHAT?! He was too solemn of tears and said, "yes." He was sorry. I was in shock with words for my parents in the morning! No one yet knew what I witnessed on my end... Today, reasons and exact time are still an enigma. SO a colostomy, a skin graft holding my belly together, looking like a freak with alien pregnant belly, in which the graft site was from a leg that is STILL NOT HEALED TODAY and SO awful that no one will touch it, and not only was I was emaciating, but had tragic bed wounds unlikely to heal that did, but still hurt along with exceptionally sensitive skin and sensitive EVERYTHING! I woke from death, was told I'd never be off a respirator, then never off oxygen, and actually had TWO strokes. A massive and another one. Learning what that meant, as years passed, scared me. My lungs regenerated by themselves, no respirator or oxygen. I had a second birthday, was a freak visited by those witnessing a miracle, yet all went wrong. I have no immune system, I'm sick all the time, blacklisted from trying a malpractice suit and yet I go forward. I've taught myself to walk, as rehab was abusive, and their only problem was finding anything to challenge my cognitive skills! I was beyond them! I even figured how to get my left side back though it is quite weak and more sore at some times more than others, and from infections in the teeth from too many medications, I had to had all teeth removed I'm now waiting for hope I can finally have surgeries and get better!!! I'm sharing this because no one really wants to deal with my case and I'm scared. Also because it shows miracles DO happen in MANY ways! I've been through Hell in all ways, much I've left out, but I'm trying. I admire you, and felt you deserved to understand whatever.. It is getting harder at 33with no promises, constant pain, yada yada, etcetera. Anyway,if one can find the nerves that trigger movement and hook them to a Tens unit.. It works. I did that. I don't know why I'd be saved to be like this if another Miracle does not happen, lol. But I'm a lucky one. =/ I can't believe I'm telling you this, but I want to. =/ this... couldn't even get to Oprah! But I need help. I help others via Internet as I can, and other ways when well enough as it's all I can do, but I'm tired and really need heard! So I'm terribly anguished to REACH OUT, but I am now REACHING OUT in places with HOPE! No doctors here will SEE ME, I'm not treated fairly! And I want to feel BETTER! What will it take? Too much must be illegal and there HAS TO BE A WAY! Please!?!? That is the condensed version. I've never not done everything for myself, and this is embarrassing. But.. Now you know.. Well, you know some. My left hand's fingers are not reliably tactile, so imagine what it is like daily.. But on a positive note, it has been a bridge. And without it, I'd most probably not have met you, which I'm grateful for.