Blog: The Happy Lab Rat (HIV-medicine free)
by mysogood1031

Bleeding to death...

Would you tell an ER that you have tested HIV positive?

Date:   2/17/2014 4:50:56 PM   ( 6 y ) ... viewed 1377 times

The past two weeks were crazy. The first week just felt like everything was falling apart: my beautiful brand new bike got stolen while it was locked up outside of a store (in a matter of seconds, most likely), I kept breaking random things around the house, I allowed myself to get scammed into a new phone company's evil clutches and may have lost a lot of money already from their 'oversights' that they have yet to correct, suddenly I couldn't find my driver's license.... One of those weeks where I am left thinking, "Are we about finished yet?!" But... nope. The next week proved to be much more eventful.
First, a little backstory. When I was a teenager, I had to get my wisdom teeth pulled at a younger age than most people. They came in early, probably because I was so wise. I had all four done at once. I was sedated, so that part wasn't traumatic at all, but by the time I got home, I was bleeding profusely from all four sites. I remember it still as one of the worst nights of my life - choking on blood every time I drifted off, replacing the gauze every five or ten minutes, being so tired and just wishing it would stop. It kind of bothers me now that there wasn't anyone around to tend to me, but my father wasn't the nurturing type, and I imagine he was probably working that night anyway. Whatever, it was a long time ago. Fast forward over twenty years, and you have a grown woman who has not ONCE set food in a dentist's office since then. I had sort of a "ain't broke, don't fix it" philosophy with my teeth, as I do with a lot of factors in my life. And my teeth have always been nice, I take care of them pretty well and floss more than the average American does, I'm sure. But one molar in the back had started to become sensitive, and I finally went in a few weeks ago for an exam.
"So, when was your last visit?" they asked. Um... yeah. About that. Well, the diagnosis was bad but not terrible, and they recommended that the sensitive back molar be pulled, because it would need a lot of work soon even if they tried to save it. And I needed a deep cleaning, because... well, because it had been twenty damn years. I won't drag you through much more unnecessary detail, but here is what happened: I almost died. Not "I almost died of embarrassment". I honestly almost died.
Last week was my appointment to get the extraction and deep cleaning. It was horrible in the way that going to the dentist is - all the crazy scraping and loud noises and two people's hands in or near your mouth while you just lay there helplessly praying they don't gouge you with a sharp tool or drill into your sensitive gums. The extraction was something I hope to never have to go through again. And then the same thing happened from twenty years earlier: the blood wouldn't stop. Maybe I was bleeding like a normal person when I left the office, but it just kept gushing as the minutes went on. I was out of my hometown, and knew immediately that I wouldn't be able to drive home. I drove about ten minutes and got a room, writing everything down that I needed to say at the front desk because if I opened my mouth, blood would pour out. I bought two boxes of gauze and got settled in to my room for the night. I didn't remember how long I had bled the first time that this has happened (when I was sixteen), but it seemed like it had stopped at some point during the night, so I was hoping that would be the case again. I seem to have thin blood anyway, not to mention all the garlic/ginger/vitamin C/cayenne and God-knows-what-else that I take daily that are blood thinners.
Again, I won't make you endure the awful, bloody details. Actually, yes I will. I finished the two boxes and graduated to towels. I just kept throwing them away. The room began to look like a murder scene. I couldn't sleep, or the blood would fill my mouth and throat. I cried, I prayed, I shoved more towels in my mouth. Finally, around seven-thirty in the morning, I called 911. An ambulance came to get me, I spent two days in the hospital and had to get a blood transfusion. No joke. It turns out that I have a genetic bleeding disorder called Von Willebrand. I have a mild type of the disease that may only show up when there is trauma, such as having a tooth pulled. I haven't researched it much yet, but it isn't something that will affect my life much, obviously, if I don't have a reason to bleed profusely.
What is becoming interesting to me is that with all the very specific and in-depth bloodwork I have had done over the years, this has never come up. I have a theory or two about why no doctor has ever noticed that I have a missing factor in my blood.
When a person is diagnosed with HIV, every ailment that affects them is from then on considered "HIV-related". I've never had an open-minded doctor, so I suppose there must be some out there who treat ailments independently, without putting the HIV stamp on them and sending the patient on their way, 'lucky to be alive'. Ohhh, I feel a tangent coming on. Here we go.
You know, I can only speak from my own experience. But I would bet money that there are hundreds of thousands of people who have tested positive that would be nodding their heads in agreement. If a 'healthy' person came to their doctor with, say, unusual bruising, that doctor might run a series of tests to find out what the problem could be. But me? It's to be expected. Like weird skin issues or diarrhea or a f***ing billion other symptoms that are warning signs of a billion other maladies. I could have a food allergy, a vitamin deficiency, a lack of probiotics in my intestines, ANOTHER BOOD DISORDER THAT IS COMPLETELY UNRELATED, but I may never know because my doctor throws a big blanket (with HIV embroidered across it) to cover the symptoms.
I had a viscous internal debate on whether to tell my status to the hospital while on the way there. Part of me felt that it was my social obligation. The other part knew what would happen if I did. The truth is that it is not my obligation to disclose to ANYONE other than a potential lover and possibly certain work-related persons, depending on the state that I live in. And hospitals deal with blood every day, and the staff are trained to protect themselves. I wanted to be treated like any person who had come in after having a tooth pulled and needed help to stop the bleeding. Call it intuitive or call it logical, but I knew that it couldn't just be from having stopped taking my meds almost a year ago. I didn't have HIV when I got my wisdom teeth pulled. There had to be a different reason. I am SO glad I kept it to myself. They took a lot of blood for testing purposes (nothing is quite as ironic as filling a trash can with dripping, bloody gauze as vile after vile of blood is being pulled from your arm). No one mentioned my HIV status, even after all the tests came back. But they talked a lot about the blood disorder, and my family confirmed that there were several cases of it on my mother's side.
Now that I am home, I can't shake the feeling that had I been under the care of my own physician who thinks that I must have a death wish to have chosen to stop taking the HIV meds, things would have turned out very differently. I would very likely still be in the hospital, or would have been practically forced to restart the meds before I was released. For anyone who has not been through this, it may sound like I am making a bigger deal out of this that is necessary. But in my own life, these situations are very real. My doctor is not a mean person - she's actually very kind. Her worry about me comes from a genuine place - she has seen too many people become sick and eventually die. I believe that. She thinks that I am naïve and uneducated, I'm sure, or that I think I can just take a few herbs and I will be magically cured. I hope from my posts here that it is relatively obvious that I am very realistic about the severity of what I'm doing. This isn't a game to me. I know what I am dealing with here. It's a f***ed-up, burly, selfish virus that is extremely intelligent and adaptable. Well, I am all of those things and more.
I take back what I said. Maybe this is a game. And I'm going to win.

P.S. I just started the MMS internally today. I'm calling it my Chemo, not because it is anywhere as deadly and horrible as chemotherapy, but because it is powerful and I am making it my focus for the next few weeks while I keep increasing my dosage. Topically it has already worked wonders on my skin issues. As in, I don't have any skin issues at all right now. My skin looks amazing.
More about MMS in the next (probably many) blogs!

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