Advocacy: Lets Help Amanda Baggs

Long ago when I first started this blog I received comments from several people. It startled me. THe idea people would read this blog. Then I had to put it away and found out people didn’t quit following. So with that in mind I am writing the first advocacy post in two years. A great deal of what I learned about advocacy I learned from Amanda Baggs. She was kind enough to email with me for a short period when I had just survived my exhusband and I found comfort in her words. I was able to keep going because I did not feel alone. I didn’t feel trapped by all the things in my mind or the way I see and think anymore. Amanda is one of the most powerful advocates I have met, not in the sense others see power but in her effect that I can see.

These links are PTSD trigger alerts. Simply put, Amanda has been tortured by the hospital that should have helped her and is being bullied into a dangerous and potentially deadly situation. Here are the links and they do include how you can help. Sharing this post or these links will also help.

http://paulacdurbinwestbyautisticblog.blogspot.com/2013/04/no-anesthesia-for-disabled-woman.html

http://webmuskie.tumblr.com/ This tumblr has an entire series of documentation posts about the event. This is the first hand source of the info.

Please do what you can to help Amanda get her needs met and not be punished for the malpractice of her medical team. I am going to go curse into a corner and figure out how to make the calls around my brain tomorrow.

Update: I redid the links to the blogs, they should both be working now. I am not sure why they weren’t since the links are the exact same. If issues persist please let me know.

 

Little Flickers of the Candle

I mean for this to be a short post though often that is my intention and I have yet to muster one of those. I am listening to Sprite who is so soft and I am in that just woke up from my nap space still. I am making morbid associations that I can normally shunt away, I find it a bit fascinating. These are the little flickers of the mind’s candle. They are the sudden illuminations that can lead to a gasping breath as the ideas start to coalesce or clot together.

I am wondering if Sprite, who doesn’t actually like the traditional pet bed but who at the vet’s office when Nymph’s time came climbed in first, then settled down and waited with the little one actually understood that the bed was for Ny’s comfort? She has had them offered at various vets, and shunned them each time. She has her own of a sorts, it’s a lot more cloud like, a dark color, coated in catnip and she has yet to touch it. Though she was staring at it in her basket with this great look of melancholy. That or the cleaning of the basket and the addition of padding instead of a blanket is no longer “right” because it now holds no scent of the little paws and bright eyes she and I love.

There are now no hidden corners in which she can rest and inhale the warm scents, if now a bit musty, of Nymph. There are now no spaces or places in which to hide, really. Those were either changed, destroyed, or moved. This was necessary so that she can be healthy and whomever comes to live with us too. Yet I see the flickers of sorrow in her at this. Her pain is great. Not that mine isn’t but I feel hers is greater. She has never been this sad to be away from other cats.

Not Thor, whom she had wrapped around her tail and was her loyal male slave like creature. Not a lover, but instead the fetcher of toys and the kneeling footman awaiting instruction with the flick of her tail. She didn’t like his companion Mid-Knight much at all but was sorry he fell ill, Mid-Knight seemed to resent her more than she didn’t care too much about him. It was all her playfulness and rejuvinating his once quiet friend. This darned female had gotten Thor up to running up trees, despite being declawed. I always worried about Thor being allowed outside with his defenses gone, but he was not my cat. I could barely keep her in once we discovered her allergy there.

William Shakespurr, whose perfect owner is now dead as Craigslist displayed while I was companion hunting, he was not mourned for even an hour. The atmosphere was celebratory for both of us. His blundering forcefulness while endearing left us both with literal wounds and literal scars. My nearly dying at the hands of this cat was just too much to bear.

No, it was Nymph who wooed and won us. In fact I was unaware how much her presence had changed me. My doctor’s visit today helped showcase some of that. As she commented on the change and just how much cleaner things were, despite the layers of cat clothes which had been left to dry overnight on every available surface, I told her why there was so much cleaning. In fact the only real thing that needed a good scrub in general was my carpet but it looks so much nicer that it IS worth commenting on. Cat vomit stains are gone. I am doubly sold now on a carpet cleaner for myself. Yes, when I told her she was very sad. Then she looked a bit worried, and told me why she was worried

Nymph had been medicinally good for me. My blood pressure went back to normal, I had quite a long year of moderately high blood pressure. Normal for most people is high for me. I wasn’t as pale and pasty, though I am pasty again it isn’t the loss of Nymph but again, uterine dynamighting. She saw both Sprite and myself “blossom”. We became ourselves, as if the missing piece was found. That’s how it had felt with Nymphy too. That little sadness that is there is a ghost of the flickers of her candle. It’s her shadows, her scent. The ghost isn’t something Sprite or myself wanted gone either. Nymph smelled like chocolate to me. Sprite smells like sugar cookies (gluten free of course).

Thor smelled like grass. Mid-Knight’s scent was very gross, though that may have been the impending illness there waiting to be noticed. William Shakespurr smelled like pee, because he would roll in the litterbox after peeing. Very disgusting cat that one. Yet when I would lay with Sprite and Nymph on me I would smell them both and it was better than eating a chocolate chip cookie (dark chocolate chunks).

So as I wake up, via writing, I am left with the rest of the thoughts of her visit. She doesn’t think I am any more depressed than I was a few months ago. Grieving? Yes. Depressed? No. I am always a bit depressed but I didn’t lose any ability to the depression except that one hour a few months ago, before Nymph, when I had to choose to get out of bed because laying there was just being depressive and I didn’t let me. I’ve felt consistently good. Most of the time I am happy. I am death obsessed but, that’s par for the course given my life. My doctor says so. The amount of death I have dealt with outweighs most average US Citizen’s experiences. I think those studies (she could cite them, it was funny) are a bit focused on middle class white people but I could be wrong.

My exhaustion is definately a side effect of the gouts of blood. My blood tests show I actually have been cycling. My uterus is trying to WORK. My ovaries too. Damn them. She was relieved I refused birth control, and having had an anaphalactic response to Yazmin, I plan to continue to do so. That won’t stop this kind of bleeding as my blood is blood not a mix of fleshy bits that pass for blood to the unaware mind and eye. The color is wrong, there is no fade in or fade out as my body tries to get “things done”. I don’t have Cushings Disease, as was a concern for a long time. Yay, no need for Brain Surgery.

The thing is, she also is worried that my current doctor is ignoring the issue. She recommended I sue and move to … California! The fact that my best medical option is moving out of state irks me to a degree. She doesn’t think a hysterectomy is the right answer for me, sure it will fix the bleeding issue but it doesn’t tell us why I am bleeding, is invasive, potentially deadly especially in my case, and could screw me up if I don’t have an answer. It could be cancer but she still thinks, as I have said myself, that it isn’t likely. Not because I don’t have a higher risk or symptoms but because there are less deadly scary things that could be wrong. My hypothesis about Ehlers-Danlos Syndrome causing tears is the most likely. In that case, I have no clue what the treatment will be but I have guesses.

It was good to affirm what I already knew. I am fine, in fact I am hardly a flickering candle most of the time and feeling this weak is very annoying. I am not sure I am able to sue at this moment because of lawyers fees etc but I do like that she has some similar ideas on California’s climate. SHe specified LA, which is my aimed at city. I have a fantastic doctor.

I also started the process for a cat interview with Sprite, so maybe by Monday there will be another cat living here. The cat is a bit older than Ny, but then I thought Ny was too young. I am not going to age discriminate against cats at all. I just hope this set up works out. If not, then the cat’s previous owner/mother will regain property of said feline and that will be that. We’ll just try again. Sprite’s gotten down to sulking most hours because she is lonely and sad. I think another cat around to at least fight with a bit will do her wonders.

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.

Tick Dock Here Comes the Doc

Sometimes things that you don’t think you need can be amazing. I have a new doctor, who can come to me. I didn’t expect to like her but Sprite rolled belly up. If I didn’t know her so well I would presume she loved everyone. She may allow some who are only moderately okay to pet her but no, she’s in adoration of the home healthcare doctor. This doctor has a blood pressure cuff for the wrist that is accurate and also doesn’t leave me bruised. That’s  right, accurate and no bruised. It’s great. I can have an Xray in my house, she thinks my jaw is not broken (yay) but that I damaged the tissues around it. This has caused some funny inflammation. My medications that aren’t morphine (I can get that easily from my pain meds doctor and that won’t change) have been denied. Need an inhaler? Not without going into the office. Not an issue now.

The only issue was trying to remember everything that’s wrong with me. I only forgot six, and remembered by the time we were done. I used my white board to write things down when the words didn’t come. She handled the Autistic things I was troubled by today well. I was unable to make eye contact or even fake it for more than five seconds. I also ate my brunch infront of her and she left with the recipe for Meat Cake. Sprite even wants Meat Cake but I will not share.

There was no judgement, just a bit of surprise at some of what challenges me and a reminder that I only have to go to the ER for emergencies and to call the office first because most of the time someone can come to me. No more immune system challenges! I feel relief honestly, and joy.

Oh hey look two posts about good things in a row! Scary isn’t it? Oogah boogah!

The Chronic Life Style

When you live with one or two or even more chronic illnesses your life changes. You lose something. Life becomes medicalized. You are removed from society, even if society doesn’t see it. Some conditions are blatantly obvious, but others may be hidden by clothing, misinformation, or even great efforts by the patient. You become a patient. Likely you also lose patience with the practice of medicine. Depending on the rarity of your disease or diseases you rapidly eschew laymen’s terms, having to research so that you can teach your doctor about the latest treatments.

It may feel like you should give up on doctors, but you may need medicine in order to have any sort of quality of life. Painful procedures including biopsies may become a regular requirement for treatment. You will have a team of doctors, none of whom communicate with one another. The coordination of this team depends on you. Most doctors will try treatments that do not corelate, and many will eventually give up on you. They want to treat you with a cookie cutter treatment, though for most rare conditions these do not exist because the pharmacutical company cannot make enough money and doesn’t really care if you are in pain.

You spend most of your life in a waiting room, and once you have a doctor in a room with you there is often a fight to get them to listen to you. Eventually, you learn how to make them listen, though this comes with practice. You are known by your first name by a pharmacist if they care. You learn to count your painmeds at the counter if they don’t. Sometimes they pretend to care just to steal your medicine.

Your doctors all want you to take dozens of pills, and often put you at risk for an overdose if you do not know why you are taking other things or their side effects. This burden can be very heavy if the pain is effecting your cognitive function. Some doctors will ignore what you want, they will ignore your chart and may prescribe drugs that you are allergic to. They then get offended when you point out that the medication will harm you. You don’t matter to these doctors and they are often specialists. You learn soon too, that you want a doctor freshly out of med school, because they are open minded and are often the ones who remember the names of rare diseases, but you want the experience of a doctor who has been at this for years.

There is no option for both, you can either have inexperience and passion or the doctor who has been dulled by years in the system. If you go to a hospital with even one medical student you will be shown off like a side show freak, because you are rare and fascinating. They will prod you, even if your condition has nothing to do with your visit. If you have an ear ache, they will still want you to flex your joints or to poke your skin to see it’s odd reactions. They all want to interview you or treat you so that they can write a paper on your condition. None of them keep in mind the humiliation that some of their questions can cause. Some doctors do not ask permission before telling these students about you, violating your HIPPA rights.

At other hospitals the internists may be in the same position as medical students, though they are much rarer. Often the internists will arrive and will ask permission. The curiosity still gleams in their eyes but they are not going to ask the questions with as much bluntness, a sign of mental maturation. Still, even if you are a small child, you forget to have a childhood. Doctor’s don’t really seem to understand that you lose your personal life.

The condition may have treatments, but many of them might be surgical. You could have a few conditions that cancel out the treatment options of others. The horrible sensation of turning into a grotesque monster may hit you. At this point, or even before, many with Chronic conditions turn to thoughts of suicide. Some even commit suicide, abandoning their families and lives. Some choose this route because they were abandoned instead. All Chronic Illnesses come with a side risk of severe and Chronic depression.

You might start laughing at every new diagnosis. You might hear the words “rare” or “genetic” and burst into giggles. They aren’t sounds of joy but it is really a mask for your horror. Each diagnosis has the same grief process. Sometimes you may be able to skip denial but you can never skip over the tears that you cry when you are alone. Even when you have a support system, they can’t always help you to feel better.

As your condition progresses you forget to do things such as buying groceries, or you have to choose between the medication that is vital to you and your pain medication. Many people with chronic conditions are looked down on if they need a handicapped space to make it through their shopping. Some careen through the store in a rush trying to get everything done before the pain overwhelms them, or the fatigue. Others use a motor cart provided by the store, praying that some little old lady doesn’t see them. They might feel guilt the first few times, but the ability to buy groceries with diminished pain is such a huge relief that they continue to use the carts.

At this point some continue to work, though others may lose their jobs. Not only are most people with Chronic conditions, even those which are supposedly pain free, fighting depression but the treatments may cost them their ability to work. If, as with Hidradenitis Supprativa, there is no treatment beyond surgery the patient will likely wait until the condition has debilitated them completely depriving them of their livelihoods. Some of these conditions are listed in the government’s database of conditions which need expeditious approval for a Disability claim.

Due to the listing in the Disability Database, the patient may run across a person who desires their disease or at least the diagnosis. This can be in the waiting room of the doctor, in line at the Social Security Administration Office, and even online, when seeking information and hope. This can often prevent a patient from seeing this doctor again. The patient might notify their doctor or the receptionist about the conversation. Instead they likely are too ashamed by what they have heard. Usually the person who has stated they desire this horrible condition believes it is truly painless, and considers it the easy way out. They are unaware of the detrimnetal effect that their words might have.

The patient with disability still faces the cyclic visitations to a doctor that the patient who has retained work or has made the choice to try and deny the need for Disability Benefits does. No chronic patient is exempt, though there may be enough relief from their condition to give them the sense of remission. Sadly due to the Chronic nature of any Chronic condition, there is no truth to this and they face the risk of a deepening depression or the onset of depression depending on their personality.

It is recommended by most physicians that patients seek therapy, although the psychiatric community eschews supporting most pain patients, preferring to tell them that their condition is in their head. The patient likely has spent years fighting for a diagnosis and will often have trouble with the notion of seeing a therapist again due to the traumatic treatment recieved before. This is not universal, though it is more common than a happy history with a therapist. This does not mean that therapy is not a good choice, as the state of mind can effect the reception of treatment by a medical physician.

Many patients will seek a support group before seeking out a therapist. With the advent of the Internet there has been an upsurge in email groups. Some patients may struggle with finding a group where they “mesh”. This struggle can be due to race, religion, or even prejudice faced against certain conditions. The rampant discrimination with in the chronic illness community can at times push people back into the mental distress mentioned previously. Many support groups try to modify the twelve step system or insist on a certain religious belief. Some members of support groups may be religious centric, focusing on prayer. Not every chronic patient wants to pray constantly. Many have had crisis of religion and are also seeking out their beliefs. This means that the religious patients who have turned to god may agitate their mental stress further.

This does not mean that any of these groups should disband, it merely means that a further support structure must be created and maintained by the patient. The patient has at this point forgotten that they can be more than a last name in a waiting room, or a first name if their last name is moderately difficult to pronounce. The patient may have had multiple personal crisis, and many years may have passed. Each patient progresses through various points in this article, and perhaps all of them. Some may be exceedingly lucky and find the perfect doctor, therapist, and have the perfect family who supports them unconditionally. These patients are rare. They also live with Unicorns.

Depending on the condition and the level of gore that the patient faces romantic interludes might be impinged. It may become difficult to hold their children, or to touch their pets. Fear may also be an issue with the patient’s spouse. Sadly, many chronic pain patients face marital crisis though a significant number of these crisis actually strengthen the relationships. Chronic Illness does not preclude the patient from desiring romance, love, or affection despite the potential for an increased level of anger as a side effect for the pain. The patient might begin to display outbursts of rage, instead of depression. They may also seem to mirror the bipolar patient (if this is not their chronic condition) with Mood Swings.

Some of these emotional reactions are the natural response to the brain altering it’s function to try and work around chronic pain. Others may be a response or side effect to treatment. Some medications excaserbate depression, others may mask the symptoms but only for short periods of time. The end of the masking period will be followed by a worsening of the condition.

With patients who have only surgery as an option there is the risk of being scammed by snake oil salesmen, untrained herbalists, and finks. A patient must research every medication, doctor, and treatment. It has become the patient who knows more than the doctor.

In order to return to being a person instead of the patient, a patient may tell their doctor to sod off. This is otherwise known as firing the incompetent buffoon. This is not always effective, as the medicalization of their humanity may have progressed rapidly and with great depth. The patient has found that resistance is futile. It appears that the Chronic Life Style is much like that of the Borg, as the patient has lost personal identity with in their medical file, beyond DNA evidence. The patient has discovered the medical hive mind, and thus their own knowledge has given them the ability to connect to it.

Published By Dr. Sarc A. Sim in the American Muddicle Association Joynal.

Author’s Note:

This was my attempt to try and vent. I spent last night trying to find out if I needed surgery for a very painful abscess that stayed hidden in my flesh for a good while. The cavernous hole was larger than a baseball, and showed up only as a small spot. The current treatment prescribed was oral antibiotics, which I stopped this morning. They made my stomach hurt and effected my reactions to the sun too much to continue.

The incompetent dermatologist I wrote about before prescribed this and a topical antibiotic that I used last night. I am now being forced to choose between improvement in the skin itself with the sensation of being burned alive or a faster progression of this illness that has no real treatment besides surgery and skin grafts. I haven’t decided yet. I am not sure I can handle that much pain.

I also am trying to get over the feeling of being alone. I wrote before about my rejection of mainstream religion, and all of the HS groups I could find last night seemed to talk about how prayer is the only treatment. This left me feeling as if I should just go to sleep and never wake up. This is a step away from suicidal thoughts for me, but is very close. The urge to give up is universal, with any challenge.

The final nail in my emotional coffin was seeing pictures of the treatment for HS. My skin is unable to hold a stitch, which means that where someone else could have the skin literally cut out completely and grafted over I could not. I did determine, as my doctor never knows and I have yet to find a Dermatologist willing to treat me more than once that I likely do not need surgery as long as I drain the abscess hourly. I am doing this and the wound is already shrunk down to the size of a golf ball.

I know I have support here, and someone else who is reading this probably found out they aren’t alone. I am considering doing something that feels drastic. I am considering building a website to host an email support group, a forum to discuss medical things, and a place to discuss non medical things. This would be a place to congregate. There would be a selection for those with the need to talk about their religious choices, but it would be seperate from the main support group as those persons are more likely to find a support group that fits them. I hope that it is clear that I am not judging anyone based on their religious choices with this, yet I want to make a place where you do not have to be religious, of the same religion, or can be an athiest without being judged.

I dislike reading about how once someone started praying, eating parsley, and did penance they realized they are marked as a sinner and that is the end cause. Yes, this is an extreme form of self belief, yet with the more untreatable conditions, of which I have many, that this form of extremism is more prevalent. I believe that some persons who happen to believe in the more widely accepted religions just as the less widely accepted religions may go to extremes but the main groups do not.

I feel that this all needed explanation as some people may be offended by my words, and that is the last thing I want. However, I needed to vent my emotions in order to subvert the depression that is trying to take over my mind.

If you would be willing to help create a system as described, please either use the contact form and drop me a line or post in the comments section. I cannot do it alone, and I do not have enough time to make this a reality at this time. This of course is logical as any group needs more than one person. I am looking at the Yahoo Groups System, as well as some of the free services for a website.

Sharing the Dream

I have a dream. It started small, with the idea of teaching other women with disabilities how to get their doctor to adapt to their needs, to make certain that they have proper medical care and it grew. A part of this is the rumor that in California there are accessible facilities for medical care. This access should be for all women and men with disabilities as well as those who are aging. A second portion is a discussion I recently spent two weeks taking part in. The third part is my own experience and the frustration that is omnipresent with my current medical needs.

I am sharing this dream with you for two reasons. The first is that I want your input. I am not an expert on all disabilities and I want to make this dream a reality. The other is that this will be my platform when I make my run for Ms Wheelchair USA. So, here it is, my dream.

I want to create not just an accessible doctor’s office but an accessible facility that has several purposes. First and foremost I want an accessible mammogram, one where you do not have to call, beg, and push to get access but where it is expected that you will need access. This will be furthered by a program to teach you how to adapt to your bodily changes and limitations while being able to fulfill the self exam for breast health. If you cannot adapt, either due to paralysis or other limitations then I want to offer the option of having a doctor or nurse perform your exam for you. Breast cancer risk does not magically vanish the minute you are suddenly disabled. It often goes up!

This goes further, I want accessible exam tables and facilities to offer every woman regardless of function and mobility a pap smear. I have an annual cancer scare, something tries to trick us into thinking it is cancer yearly. This year’s cancer scare surrounds my pap and it’s abnormal results and other tests that scream, “You might have cancer!” I am more worried about the high table, embarrassing lack of hospital gowns that actually fit, and my physical issues hampering the test than the actual possibility of cancer. I am loathing the idea of half climbing half being shoved up on that table, half naked and without any chance at privacy because I need help at times to even move my hips. There are accessible tables. Other forms of accesibility will be needed. I want to hear from any persons of short stature, what are the needs you face in the doctor’s office that are not being met? Even the most accessible table for a tall person will fail you, so please tell me what you need so that you are not excluded from my dream.

I want accessible facilities for rape victims with either severe injuries due to the actual rape or a previous disability. Writing these words has me panting with fear, but, how many women could be protected with evidence that is not obtained? There is enough of a violation with in rape itself, but being violated and treated like you do not matter after is a crime as well. This alone could be my platform focus, this alone could impact the lives of countless women. Accessible rape kit access with proper training for those taking the kit is a must. this is the part of my dream that is frightening, this is the part of my dream that feels the most out of reach. I must reach this goal however, for every victim and survivor that exists now or may exist.

I also want a center for adaptation. The Center for Adaptation would include a kitchen, a bathroom, and other areas that the once-abled take for granted. I still have not managed to cook a meal without harming myself in years, but a place where I had the safety to learn without being in danger of literally killing myself would help. This adaptation center must include potential assistive devices so that before the money is spent by the individual they know if the device will work. I wasted so much money on items that I cannot even use. Everyone does. Most persons with disabilities or freshly disabled persons have a very limited income, therefore this is a key component to creating universal access. Imagine learning how to cook around your limited energy, ability, and strength? Imagine learning how to clean again, and imagine too learning other things such as crafts, or finding ways to adapt so that you can create art? Dream with me and see it, a place of learning for all levels of ability.

Not just learning but socialization. I want people of all ability levels to commune together. There need to be varying support groups, socialization groups, and even a place to coordinate activities for the single individual and the couples. There needs to be a safe place to discuss sex with in ability, there needs to be a safe place where intersetion occurs. If you are gay, bisexual, a lesbian, or a transgendered person with a disability you deserve this just as much as someone who does not overlap two subgroups with in the realm of minority. The able bodied need to be welcomed here too, so that they can learn, assist, and so that there is a lack of segregation.

There needs too, to be a place to work with Service Animals. This facet will have to have answers to questions about the legalities of service animals in the given area, certification challenges, and training suggestions. Although it will not be a place to get a service dog, there needs to be a place where safe support can be found easily. Safe support that can come and help you advocate, safe support that teaches you to self advocate, and safe support for the process of accepting your animal partner.

Less medicalization of life needs to happen, and the focus on that aspect is a place to find good fashion, perhaps this could even become the funding source for my facility. The fashion needs to be adaptable to the wheelchair users needs, most likely this will require custom tailoring. The clothing needs to be affordable but also fashionable. Persons who have disabilities cover all age groups and the institutionalization of clothing is unacceptable. The clothing must also be in a broad range of sizes. Just as wheelchairs need to fit everyone from the small child up to the very large adults, the clothing must as well. Giving a place to access good, quality, stylish clothing for men and women with varying abilities will be a huge part of this, simply out of my own desires. I desire affordable clothing that works with my ability. I do not want to trip over skirts that are too long, I do not want to have my sleeves caught in my wheels if I use a manual chair, and I am presuming this is a universal frustration.

There need to be classes as well to train those with degenerative conditions to adapt, or those with compound disabilities to adapt. Perhaps the adaptation center is a new spin on the idea of an accessible home to learn in, yet, the focus on this portion includes teaching skills you might not have. What brought this to mind is my own degeneration. I lost my ability to walk and my sight is endangered. What adaptation can I have if I cannot see to drive my chair? I must learn and there needs to be a safe place for this. There needs to be a place where it is safe to feel the fear, the hope, and a place where there is hope. There is too little hope for the disabled demographic in this world.

A part of preventative care is dentistry, though I have yet to find a dentist who can work with my limitations. There needs to be a facility for dental care. I have a cavity I cannot get tended due to my combination of allergies and inability to bend backwards in their chairs. This cannot be. This is discrimination, yet to stamp out discrimination there needs to be action. If the facility cannot have a dentist, then it needs to have an office where accessible vision and dental care is listed, where referrals can be given, and it needs to be a place where there is acceptance that every body has a different need.

Disaster Safety is also a concern. During the disasters that hit the world, such as Hurricane Katrina, the disabled are often left behind. Their families may stay so that their loved ones do not die alone, and therefore these devalued people are murdered. It is murder to leave someone behind because it might be hard to deal with their wheelchair. A part of this facility needs to house a program that teaches people how to advocate, adapt, and prepare for emergencies. This program also needs to teach FEMA and other rescue organizations how to rescue the disabled. We are people, we deserve life, and being abandoned because of a wheelchair or cognitive disability is murder. It can be helped, it can be changed.

A lot of the focus here is on prevention and adaptation. My focus is not to cure disability, to wipe it out. That is impossible and I have gained from my own limitations. I cannot imagine a world without Autism as being beautiful, for without it I would not exist. Therefore the focus needs to be on preventative medicine, there needs to be a focus with in the facility on adaptive medicine, and there needs to be a focus on demedicalizing the bodies that have limitations. There needs to be a personalization of existence. I exist beyond my disabilities, though they are a part of me. We need to foster acceptance of self, of difference, and we need to offer a safe harbor for all people with all abilities to commune.

A lot of people are unable to work, are fighting for government assistance, and are dying without durable medical equipment. I want to offer rentals, loaners, and at times even the purchase of needed medical equipment such as CPAP machines, wheelchairs, and walkers. These are just examples. There would be a qualification process, and yet the freedom I felt that first time I sat in a manual chair and had more than three hours of coherent function haunts me. I have nightmares of being trapped without my chair now, I have nightmares that others feel that same terror. Those nightmares are realities. This program could use older equipment that was donated, purchased equipment, and could perhaps eventually include low interest/zero interest loans with minimal payments to allow people to obtain equipment. This could help those with a copay and a minuscule income to make ends meet. This could help someone who is choosing between homelessness and a wheelchair to get the chair and keep their home.

A second facet on employment is access to workforce training. There are already facilities yet at times access is denied based on a lack of visible potential, so, I want to coordinate with them to try and educate and prepare those who want to work but are being told they aren’t worth the training. An entire segment of this facility needs to be coordination with existing organizations to get people what they need, to get people connected with the programs that exist. A lot of people who ask me for help do so because they cannot find programs that fit their needs, even when they exist. A hub in the network could make their impact broader, while in a way delegating some of my dream over to their offices. I know one facility cannot possibly do it all.

This is my dream, this is also why I was so quiet this past week. I was dreaming, trying to put into a coherent idea what is needed. This facility will need funding but the insured can be charged. I do not see this as a fee free environment but money should not cause a person to not be able to participate. If a person can pay, or if their insurance can allow coverage then they should pay. Much of what is offered should be covered under Medicaid/Medicare and other insurances without issue. The rest could be funded via donations and grants. I have no idea what I would call this facility yet, but, that is not the most important focus at this time. Branding must come after a plan for action is laid out.

Share the dream. Share what you see as a need. Please feel free to pass links to this post around, I want to offer a taste of freedom to a set of people that anyone can join, to the only equal opportunity minority. If we band together, we can change the world and create universal access. This plan is flawed, this dream is imperfect yet it is merely a start.

Spiderweb has no Spider

March is Brain Injury Awareness month. I have brain damage in my fine little skull, all from untreated concussions, working through the pain, toughing it out and yet, I am never certain what issues spring from what challenges. Since I have autism and brain damage, as well as visual and hearing ailments, what causes what?

Too, when I sit out in the sun for five minutes and note my pustules later, reacting to the presence of the very thing that makes food grow and light fill our world, I have to guess, is this exact blister from Hidradenitis Supprativa, a side effect of Ehlers-Danlos Syndrome, an actual pimple, sun poiosning as my mother calls it or is it still something else.

Then, with the issues with walking. It could be a side effect of the Ehlers-Danlos Syndrome, the Spinal Cord Injury, or just a minor pelvic dislocation, but is it something else? Did falling through that chair do more damage elsewhere that no one can see?

Multiple disabilities are a huge challenge. When i thought I had a single disability, I had unanswered questions. When I thought I had two, I thought the world was ending. Then with three, it all began to feel alright, but with four I was once more mourning, and with five I became angry. With six, I felt as if i should just die. With seven, I just stopped caring about how many I had, and began to fight to thrive. With eight, I found it status quo, with Nine, Ten, Eleven, I began to count it all over again.

I am a spider’s web, everything is connect, everything has always been here it just has a label. The labels are flies, sticking in my webiness, wiggling and shaking things up. So far, the labels have done very little to better my life. Usually they complicate it. If I tell a doctor about more than one disability, they usually give up on me. What right does that give them to deny me a quality of life?

I want to see, I want to hear, I want to live in a world without fear, I want to dance, I want to be just me, yet me is not without disability. I no longer believe in a cure for any of my ailments, except the spinal cord injury. I do not want them. I fear the changes to personality that treatment could’ve brought. Sure, I might not have had it as hard as I have. I might have had more than just a single man to teach me how to be a person. I might have had friends.

Or I might have been worse off. I get tired of able bodied people, those in denial of disability, or those who think we are all cookie cutter identical creatures telling me what works for their disabilities.

I have tried experimental treatments, mostly for my PTSD and they made it worse every time. EMDR, I have no idea what the letters mean but I remember the treatment. It worked for every other patient, so I was just a failure for not becoming magically better. Penicillin allergy even has an example, a doctor wanting to see just how allergic I was, because of course it costs more money to have another medication and money has more value than the patient.

When I was younger, long before my autism diagnosis I had an Occupational Therapist funded by the school. She did teach some neat things, we worked on my fine motor skills, which still suffer, and made earrings. We did all types of activities, molding things in clay, dancing. This was what I did for recess, another bit of isolation granted by my abnormalities. I was lonely, until this program came forth however. There I met the other kids who were a little like me. This woman decided to have my mother take a rubber brush to rub all over me, to try and desensitize me to the world. She did not ask me, she just called my mother in and during school one day she grabbed my arm, while talking to my mother and began to scrub my flesh.

This worked on the other children, so it had to work on me. I started screaming. It felt as if she was pealing off my skin, I screamed, and screamed. She told me to shut up, it would all get better. My mother took the brush out of her hands and asked why she would do that, when I was sobbing. I don’t know the end result of the conversation, but we took that brush home. It was just like the ones sold to wash dishes with, and that is what my mother did with it. I think she chose to lie to this therapist. I do not remember because I went into my head, flashing back to times when my father did try and peal away my flesh.

The sensory overload pains me to ever remember, it wasn’t just a sensory overload it was a flash back and a denial of my right to unique treatment. I never accepted the treatment of this OT again, I went, but I became surly because she wanted me to be like the others. She wanted to scrub me, until I just didn’t care. It did not matter to her that it hurt. I still have nightmares from her scrubbing.

I wish I could say it never happened again, but, she would scrub me herself, at times using this as a punishment. Too often the medical community does this, forgetting that each body has a unique chemistry, each brain a unique perspective. Now I fire doctors who do not listen, they get one shot and that is it with me. I have to be harsh like that to survive.

My cat William, the one with brain damage, has a similar problem. Touching his paws hurts him. He has dangerously sharp claws, cutting me when he doesn’t mean to, but to trim them means to cause him that same sort of pain. I figured this out after I had used our PetoFiler nail trimmer on him, it vibrates, rotates and basically sands down the nails. Sprite loves it. William was in pain for days and I barely tipped the claws off.

Each method for a traditional manicure fails him, I have yet to find out how to protect us both, but knowing what it is like to be tortured by someone thinking they know what is best, I back off. I would rather have cuts than send him into a world of pain. If you are a doctor, reading this, try and remember your patient might feel pain differently than you do. Sometimes I have to go naked because the pain from cloth rubbing against my flesh is as potent as that scrubbing brush.

It was yellow, it was multi-textured, and it is one of my worst nightmares. Those moments are on par with time spent in the care of a diagnosed psychopath. Do not traumatize your patients by thinking you know it all, or that every treatment should work for them. Humanity is full of individual people, not a bunch of identical organisms.

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