Changes and Medicaid

I should be asleep, I was up at Six AM unable to sleep, my mind entrenched in researching what it will take to get Medicaid to cover a new wheelchair. I just got my scooter but my needs have already changed. This might actually be enough, despite being told by my Wheelchair Provider, “Suck it up, you have to wait five years before they will even consider another chair.” I left feeling anger at the young man, first he failed to repair my chair, then the manufacturer also failed and they gave it back to me running but barely manageable. It doesn’t turn.

How can I function with a chair that won’t go around a corner without a circus routine being thrown in to the mix? I gave up on driving indoors with the one I have a while ago. It is too bulky to fit inside. I didn’t know they should have let me drive it before I was left with the chair, or that I should have known with in a month, by some strange magical process that the chair was wrong for me.

I had an accident, before I started this blog, as well. I sat in a chair, in my own home and due to age and exposure to extreme weight for twenty or more years, it collapsed. It felt like I sat on air, even as the wood cracked like a shot gun. For me, when something frightening happens the world slows down to a snail’s pace. I could see the terror in my friend’s faces, and was glad instantly that the abusive roommate wasn’t out of her room yet.

I felt too, the pain as my body tipped into a position that it no longer could sustain. I knew I was going down. I felt this same slowness when my back broke initially, it took forever. I was actually bored by the time the car finished it’s impact and by the time the chair hit the floor, wanting the pain to come, so that it could be over.

The result of my strange slowdown is two fold. The problem is the anticipation of pain might be either smaller or larger than the actual pain. Anticipating it I may tense up, making the imapct worse. On the flip side I can also work through strategies on how to land, shift position, and protect myself. I also can go through panic by the time I hit the floor. I just hate feeling like I am in a Zack Snyder Film. My least favorite director, his trademark is Super Slow Motion Story Time.

I was lucky, I did not hit my head on the chair. I should have but when I just let myself go, my body relaxing until impact, this changed how I flowed through the air. I was impaled on a wooden stake, and immediately made a Buffy Joke, unaware that the joke was too close to reality. I barely bled. My instinct too is to slow my heart rate, to stop all unnecessary functions. this is fine enough but, also is dangerous. I am not sure where I learned it either, but it might be my Mother. She does it too.

My service cat kicked into action, running first to try and fetch any human left in the house, then, checking to see if I was still breathing, before she called for help via telephone. My Person and my PCA (Personal Care Attendant) were both called. Then I went via ambulance with the nicest and most well informed paramedics. I do not know what these emergency personnel are called in other countries but they are our first responders, along side Firemen, and the police.

They were worried, and told me so, because I was far too calm. I reminded them that panic doesn’t do anything for you and hinders care, and that my friends had panicked enough. I had spent half an hour on the floor, trying to not move. I started shaking violently, having small seizures as my body protested. Finally, my seizing was documented. It is related to my level of pain. They gave me some morphine at the hospital, just before sending me home.

First they did Xrays, nothing appeared to be wrong. It’s been a month, maybe two. I am never really sure how much time passes, a side effect of my childhood mental health care and severe traumas. I am not sure which one caused this, PTSD or too many pills. The Xray tech was a student. He was cute too, though I barely registered that. He and his supervisor had a patient who could not move into their positions for the most part, my body refused and it was unsafe until after xrays due to the existing injury.

I found something new, they accommodated my body and still got the needed film. This is rare. Usually they twist you, ignoring your screams, telling you it will just be a second. Xray time is a form of abject torture. Why? Well, there is not usually much they can do to accommodate, or they forgot how. I had a smart tech and a brilliant student. I told him too, he should stick with it and that if he wanted I would write a personal recommendation. I gave him my email address and telephone number.

I have a trained reflex to try and fix people, and this evolved into making bad jokes and never crying in the ER. I cried that night, and there was blood. I still made bad jokes but, I finally had an ER doctor that knew it was the pain talking. I had to make jokes in order to seem okay. I couldn’t stop. That was when I started trying to make myself accept that I need a therapist. Self defeat is not an option when your body is already falling apart.

You know those toys with strings in them, that when you squish them they collapse? I feel like I am one of those and someone keeps hitting that button. I often look like that when I fall too. The analogy is too close for my Person. He doesn’t mind my jokes usually but sometimes when they are cruel and anti my existence he has to remind me to be gentle with myself.

The hospital I chose was full. It rarely is, and that meant anywhere else I would’ve been worse off. I live right next door too, the Women’s Hospital. A hospital dedicated soley to the health of women! They were the first place to accommodate a need, long ago. They woke me up to being treated like a human by doctors.

As we left my doctor shared a funny story, perhaps to illustrate how unfunny any trauma was, but, it was amusing in it’s tragedy. Here it is paraphrased, beyond this point, if you are squeamish, I would skip the blue text.

You like jokes? Well, I have a sort of funny story for you. Lately we’ve been seeing a new type of meth.” So far not funny.”People are mixing laundry detergent and amonia and injecting this into their bodies. Supposedly the best high yet. We have seen a few who miss the vein.” I am busy imagining what the ammonia is doing to their brains, when my Person shudders and the doctor continues, “Each one had gangrene before coming in. I know this isn’t the funny part. Seeing their flesh cook from the inside out, but, they usually start seeing things. That’s where it gets funny. Blue bunnies, almost all of them see blue bunnies.

I took this attempt at illustrating just how funny it wasn’t to heart. When I was in the ER for my Anaphalactic Shock I did not tell a single joke. Not being able to breathe helped, but, that story echoed in my head. Most of them left before they were fully treated. It too raised the awareness of the scents behind this new Meth. I did not list all of the ingredients here either, but he did. Now, I know, if I smell really clean laundry and it smells like ammonia too, watch out!

Life is full of change. NoneĀ  of it is easy, but, I follow some practices of Dharma with in Buddhism, this doesn’t make me a complete Buddhist, there are more components to my religion. It has helped me however, find some acceptance in being born into this body, in my family, and in the things I believe. Some protest Buddhims as a load of bull because there are aspects that could lead to self blame. I see it merely as another tool for coping with change. Buddhism is a life style, not, a religion.

I go back to the grindstone, trying to find resources to take to my doctor to explain my new needs. Likely I will see another wheelchair doctor, walk my few shaky steps, explain why they are fewer. I get tired of the explanations. Do they ever stop?

Ana Phalaxis- Super Villain!

I made a mistake. I ignored symptoms that could have killed me last week, during an allergic reaction. I have become so used to stifling my own needs through the years of surviving and it nearly killed me. I also have a limited education by my medical staff on how to handle my reactions, most of them writing off my lists of allergies as an attempt to get out of eating food I do not like.

I am not a hypochondriac. I was diagnosed as one when I was a child, because invisible illnesses are very complicated and my mother never told new doctors about the existing diagnoses she had. I have multiple diagnoses that were remade as adults, and only then did she actually believe that these disorders could effect my life.

I was sent to a mental ward for being in pain. This sounds preposterous doesn’t it? Your child is suffering, so, you have her locked up because it must be all in her head. You have her trained in how to lie to herself, so that she will take herself seriously.

I do not personally believe Hypochondria exists. Part of what makes the diagnosis work is that you supposedly get something out of your claims of pain. I never did. I remember telling my mother when my hands hurt, visibly swollen knuckles that would barely bend, and I was told to stop being lazy. This denial and imprisonment escalated changes in my fragile mind, which caused more issues.

Even now, as an adult, I can hardly acknowledge when I need help. I have a caregiver who I still forget to ask to bend and pick things up. I am physically unable to bend over without fainting, yet, I tell myself to not bother him. He is paid for this, which has helped me begin the process of healing, yet, I still hurt myself out of habit.

I did make it do the doctor in time, it took me three days. Three days of being barely able to swallow or breathe, and three days of repeat attacks without exposure. I also could not eat. Then, and only then did I seek medical help. The last time I went to the ER for an allergic reaction was when I was very small, usually I self medicate yet, I also know just how stupid this is.

This time, in the ER I had an experience that woke me up a little. I had a doctor who not only took at least ten minutes of inspecting my body and asking questions about my needs, but, he never once denied that I have severe allergies. Instead, he prescribed the necessary medication to help me heal. He also suggested I try and see an allergist, because the severity of my reaction without eating the food is rare. Most people with food allergies actually have to at least put the food in their mouth or to physically contact the substance.

I have documentation of my reactions changes, and I do not doubt that my primary care physician will send me to an allergist but I do believe that this reaction will change the level of care I receive. Last time I went to an allergist they gave me the blood and skin prick tests, yet they claimed that I did not react to either. Instead of telling me that I do not have allergies, I was told they were merely minor, and nothing to worry about. They took away the epipen, despite my having gone into anaphalactic shock repeatedly in my life. Not once, not twice, but over 20 documented times.

I am only twenty four, and my body rejects so much but, my allergies are not severe? This confused me, yet I did my best to follow orders, though, the doctor turned out to be wrong. There are other tests they could perform to check for allergies, yet, I am hoping this time all it takes is my handing over a list of the foods I react to.

I am still struggling to breathe today, but, I can think once again. My throat is still visibly swollen, but my inhaler for asthma is finally making a difference and I can feel the air in my lungs. The doctors are worried I will develop pneumonia now, though, because my lungs shut down for so long without treatment and even when I went in to see the doctor my heart was responding to the reaction.

I did spend the last few days reading up about allergies, reeducating myself, reinforcing my value and the value of my body and it’s needs. I need to protect myself, I need to love myself, and I need to teach the people around me how to identify anaphalaxis.

Until this experience as an adult, aware that it is not all in my head, I have always thought anaphalaxis meant I had to go to a doctor to survive. My thoughts were wrong. Some people survive anaphalaxis without medical care, though the extreme nature of the reaction does make this often true, there are some reactions that are still Anaphalaxis that do not kill.

In all of the times I have known about being in Anaphalactic shock I did seek doctor’s care, but, the times I have dealt with the symptoms of an attack, the times I have felt my throat starting to swell, my head getting light, and the times that my hives have burned through me, causing fevers and chills? I have no idea how many times I have dealt with that.

I am going to write an educational program with my doctors’ input to teach people about allergies, or I am going to find an existing one and take part in educating myself and others. Education can save myself, and it might make it easier for me to ask for accommodation with my allergies.

I do not want to spend the rest of my life in the apartment, I do not want to have to hide anymore. I have stopped attending too much of life’s fun parts and I miss it.

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