The Good The Bad and the Medical Drama

(This is the third time, my internet ate this twice now)
ahhahahaaa Woh woh woh… (theme to the Good the Bad and the Ugly)

Woh woh woh woh….

For those of you who have either never heard this before or just want to hear this while reading here is a video. For the hearing impaired the them is pretty much what I wrote above.

Today I saw the gynecologist about the font of blood issue and the discussion was as I expected. Though to get there I had to nagivate the world and I woke up feeling a bit fired up. I was going to make them see me even if they tried to screw up. I was prepared. So I donned my hat, today’s selection is my black riverboat gambler hat (the bad guy’s hats in every western or gambling movie) I put on make up so I could try and feel at least a little okay, a barrier between all the crap and myself, and went out. I had to take the sunshade off because the transport vans are too short for it, so I was hiding under the hat and sleeves. The ride was okay but the driver was obnoxious, though I enjoyed making him squirm with my honest answers to his invasive questions including, “Oh crap was that rude of me?” I also explained the ADA to him in detail and by the end of the half an hour journey he was very quiet and thanked me for not being mean about his questions. I shouldn’t have enjoyed that as much as I did but I was being straight forward and honest. He did ask me if I thought all technology exists because of disability and I said at least most of the things he takes for granted such as automatic doors and some things on his computer do.

I went into the hospital and popped into the elevator, went up and was immediately surprised that they had renovated the floor plan. So, I turn around and there’s a receptionist waiting to answer my questions. She is here as her first day and doesn’t know where I am going but goes to ask, returns and leads me as far as she can, I read the sign on the door about an alarm and go to back track but a tech saw me and was surprised I didn’t ignore the sign and make loud sounds. I pointed out there is a sign on the door and she said “Well in the two years since they installed that alarm you are the first person to read it.” The last time I came this door was pinned open. I am sure other people read it but they didn’t care about how it would effect other people. I sign in, noting that in this room there are children and pregnant women. One of the little girls is scared, and I am instantly triggered because there is really only one reason I know of for a five year old to be in that office. Heart broken I scribble my information, my eyes letting me read paper today.

I sit and turn my music on loudly, drowning out all but the barest sounds of the room. I don’t want to hear the joys of the pregnant women, nor do I want to hear the sorrows of this child or the frustration of the teenager who doesn’t understand why just because she had sex she has to go in. I did anyway but I tried to be respectful of them because my brain would leap and bound and I will never forget their secrets. Ever. I will try but I know that next time I see a little girl of similar appearance I will think of that girl who looked so much like I did. I think that was what startled me the most. No one, as usual, could tell that something was wrong. That’s what I want. I want people to not be aware that my brain has me in a tail spin where I suddenly connect the new changes in my dreams of demons because of a child’s words in pain, pain she should not feel.

I am pulled out of the dark thoughts by a little boy, I didn’t hear the door and that’s the point of the headphones. Doors make me jumpy and I had parked with my back towards it because that was the best spot for me. I needed to point away from people so I could focus. “What’s that mommy?” “It’s not nice to stare, that’s a wheelchair.” A few moments passed and he was there beside me, “Are you a cowboy?” Not the question I expected. I look up and I can tell his mother is tense, her body is tight and she seems upset. I may have misread this but I instead told her son, “Nope, are you?” He shook his head and rattled of historical details, I could match him and we had a geek fest in the corner. His mother,who I am still watching comes over and asks me why I am willing to talk to him, as if there is something wrong with her son. “Well he started it.” She seems confused by my answer and asks him why he was willing to talk to me. He shrugs, “She’s nice.” His mother now seems worried and tells me he is Autistic, I tell her that’s why he is willing to talk. I am too. I doubt she got why he could talk to me. She seemed stuck on his idea that I am nice and safe when he doesn’t know me. All black head to toe is threatening to the Nuerotypicals, and heavy eyeliner? Crazy goth wheelchair lady appearance doesn’t get nice from them.

I am called in, I wave goodbye to the future cowboy and go into the back. I am lead down a yellow corridor, I am sure there are pictures but I only see yellow, it’s not a bad shade but it is not a pleasing shade at all. It stabs the eye like sandpaper with it’s shade. I had scheduled a specific room because of my disability, and this was not the room we entered. This room was tiny, the door opened and would hit the patient if said patient were on the table which also doubles as Mount Everest. The nurse is confused by the idea of closing the door behind me since I stopped in the middle and look at her and tell her, “This isn’t the right room. I am supposed to be in the procedure room.” It was supposed to be written down but Dr. Receptionist didn’t do this either. I feel frustration, but I am trying to work with people. She goes to check. I try and find a way to park my chair, visualizing first for safety and no, there is no way this room can fit me and a doctor and I won’t park in the yellow hall. That’s not safe for my equipment which I need for daily living.

The nurse comes back and says that they are waiting on a call in to the patient scheduled in that room in a half an hour but leads me to it, because there is no other way. Which is why I specified when I called in, and asked for the accommodation again. There is no other way even with an army of nurses that room will work and the others are full. The procedure room is used for the disabled and cancer diagnosis. It’s no a pleasant room and it effects the nurse. I can tell this. That’s not good but I noticed this last time. There is trepidation with this room. I don’t understand that, because cancer diagnosis can save a life that is lost without it so it’s good. The cancer is the bad.

I am told I can change, the patient isn’t here yet and said it was fine with her to wait. I am honored by this because waiting to know if you have cancer is tense, scary and I have done that a few times. I trade pants for a sheet and perch on this table, which is a safe distance from the ground so if I bungle this? I am okay. The doctor comes in. I find her oddly short. She is kind and we discuss my symptoms and she agrees with my theory that the lining of my uterus got to be too thick and tore things that shouldn’t tear. So we proceed with the testing.

I hate this part because it’s awkward, I feel self conscious and they poke you with sticks. I don’t know of any procedures for men that include as many sticks as when I see a gynecologist. Q-tips are sticks. The biopsy which they attempted to perform includes more sticks. The tool is a stick that sucks things into itself, which is better than cutting. The biopsy failed because my uterus just wouldn’t let anyone in. I did tell her I was having cramps still, and she warned me they would be worse and even the attempt at the biopsy causes bleeding. Which I knew going in, from the last time. It was unpleasant but instead of a hysterectomy there is one thing to try before we go that route. This is good.

Provera and Metformin are both known to force a period in women with my conditions. I cannot take metformin, so we will try provera when I don’t have a period by January. She says if. I know better. I don’t have a minimum of two periods a year and that is part of the issue. My body will let itself go for years, a part of me is fine with this for obvious reasons but the side effects are bad. If I didn’t eat a diet of meat and meat with a side of meat, I would have needed a blood transfusion in the ER from blood loss and my doctor was upset that they did not run all the tests they should have including an ultrasound. I will be getting one of those for my birthday, as three days before said birthday next month I have the appointment. More unpleasantness but I’ve been there before. The worst part is having to pee while they use more sticks to figure out what your guts look like.

I should have been admitted in the ER, at least for observation but I think that was clear from my symptoms. The doctor asked if I was considering suing, and I did not answer. I know I can and I am going to try working with the hospital first to prevent more bungling idiocies in their future. I don’t know that this is possible. I have to try.

I am still stunned at the differences in level of care, but at least in the last ten years there has been a shot at a treatment. For ten days in January I will take provera, this will trigger a period. IF it fails to do so then I get the scissors treatment. I think I know what will happen, and it ends in snips. However, I could be wrong. That feeling in my bones could just be my frustration and tiredness. I am tired of being tired. I am tired of not being able to eat food. The good news is having a period every six months should reduce my acne, abnormal body hair issues and may stop my voice from dropping anymore. I used to sing soprano and now I am an alto. Even when I speak my voice is lower. The one bonus is also a curse in some ways as I have a “male” sex drive, as in the way I desire sex has altered itself. There isn’t a slow cooking of want and thought, there is instead a visual and then an instant need. We discussed this too, I don’t know that I want the ease of pleasure to go away but cancer is bad. Especially cancer in your body where they would have to cut you wide like a fish. If we do a preventative hysterectomy my chances of healing are better. So that’s the plan, if this drug fails then we cut out my sugar and spice. Well at least the sugar. Spice and everything nice should remain, as will at least a remnant of a puppy dog tail.

I have been preparing over the last six months for surgery. Not a specific one but there are several broken things which the only fix is to either leave it be and suffer which won’t work forever or surgery. I have three potential surgeries. My jaw, my uterus, and my spine. Someday they might want to cut around there. So I am gathering things to keep me going when the time comes. The fact that I have avoided most major surgeries until this point is quite amazing medically speaking, because of how much of my body works “correctly”.

I am even working on a plan for Sprite and Nymph. My fear is Sprite’s needs not being met. My having been away for hours today has her draped over my knee, a white hot sleepy kitty. She needs me. I need her. My doctor having anaphalactic reactions to cats doesn’t help things either. I am not resigned to surgery but would rather that the provera works however that is not what my body tells me. At this point I hope that sense is wrong but it has yet to be wrong. I will know before this time next year if it was right and that is enough for me, at least for now.

I will not miss having a goatee if I don’t shave. I will not miss cramping even after the period is over. Both of those should go away with a “withdrawal period” as the forced period is called. My doctor was shocked and called it malpractice that no one had even tried anything in the last ten years because both of the aforementioned drugs are not that new, sometime with in the last five years they should’ve been brought up. Metformin was tried for a non uterus related ailment. Doctors are so tiresome at times. If all doctors followed their own protocols so much would be better. They are simple little things that are ignored and often make the difference.

I am too tired to be angry but I am very disappointed. There is a sense of betrayal here with in me. I trust these people to protect me from my body but they do not. Yet this is what I expect of them too. I have that sense of wanting to just flee this state again. If I could land safely anywhere I would go right now. I wonder if that urge comes from the growing knowledge of just how broken this state and it’s systems are? I am not sure. I just know that my future isn’t set in stone and I am hoping that no one tries to argue with me about having a kid first. I am sterile anyway, but I was told today that medicaid will pay for me to get my eggs scraped. Since that’s just what medicaid should be covering? I almost cursed.

The doctor as she poked me with sticks, for some reason female medicine is an endless line of sticks, she brought it up. She said she has to make the offer. She didn’t seem shocked at my scoffing at the idea. I don’t understand this however. I also am left trying to imagine medicine for women if we were men. There are similar men’s issues to my problems but they have all sorts of treatments from the physical non surgical to a myriad of drugs. Why is it that my medicine for my body has to be archaic because I have a vagina? This is illogical nonsense. The patriarchy just screwed me vaginally, that was my literal thought when I had that revelation. If in ten years the only thing is another form of BIRTH CONTROL? That’s IT? No one tried some sort of other thing? I have ideas that could help medically I think but I don’t have the science to know if I am right.

Once more they have me wanting to go to school. Once more they have me feeling frustrated. I was triggered and in pain and again had people questioning if I hurt as bad as I say I do because I am not screaming. It is exhausting navigating around these iron poles of nuerotypicality. How do they expect me to react? Does everyone have to scream and cry like a baby?

Oh yes and I had an allergic reaction to betadyne in my cunt. That’s not pleasant but not as bad as latex. Turns out that the ER should have also asked if I am allergic to shellfish, and as I haven’t used betadyne in years and always was sick anyway when doing so I didn’t know. The reaction is minor, just a rash and my doctor was very quick to treat it and change the sterilization stuffs but still. Why wasn’t that question ever asked before? I know that shellfish and eggs now have to go on my allergies list for the short list or I am screwed and rashy.

I am going to cuddle this ball of fur named Sprite, she’s currently in her dreams but her body is adorable and soft. Her paws are hanging off into space, her body is curled against my leg and between the two of them and she looks like she is smiling. She isn’t snoring yet but I am going to hold her for a while. I haven’t been able to do so for the last month due to cramping but she is worth it and I think I need her too. After all she always treats me as a person and loves me, with her I don’t have to be stunned at the rarity of a doctor or nurse who realizes I am competent and independent. Even if that happens only once they realize I got to the table my self, without their help. I changed and did it all because I can do it on my own mostly, and the nurses weren’t willing to assist me so I dealt with it to get on with my day.

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3 Comments

  1. It’s strange but those symptoms you’ve mentioned sound a lot like something my Mother ans Sister have. I don’t fully understand it but it has something to do with getting male hormones as well as female ones (I think?). It’s called Polycystic Ovary Syndrome. They also get hairs in strange places (they’re more likely to have mustaches), weird period times and another symptom is also gaining weight.

  2. Right I mentioned that diagnosis above and it’s listed on my page of diagnosises. However these symptoms also over lap other disorders and therefore I have to persue every option and make certain if there are new treatments I get them, if there is no treatment then I get what I need there and if it is something else or a secondary disorder on top of that, then we can treat that. Knowing is very important even if I cannot do a thing.

  3. Sorry, I guess I didn’t read it properly.

    I agree though that knowing is important even if you can’t do anything. The doctors took years (about 5) to diagnose me with IBS and it’s a relief to find out what you have, even though I couldn’t have any medicine to help it.

    I really hope you find out what you have as well as be able to get the proper medication for it.


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