The Illusion of Disability

Sometimes I long for the illusions I had as a child about the world. I was well aware of disability, a man my mother dated had MS, and when he needed it he had a fancy chair. He explained to me the rules about wheelchairs and respecting the boundaries that exist. I was very little, six or so, and he would treat me like an adult. He even let me play with his civil war era Bugle, long before  I was a trumpet player.

I remember the day he seemed frustrated by something I couldn’t understand. He was having trouble getting his medicine. In my line of thinking, if you were sick enough to see a doctor, and he saw the doctor a lot, then you could get your medicine and be on your way. When your body stops working you would go to the doctor and come back home with crutches or a wheelchair and live again. It was that simple.

I wonder if some people never grow out of this stage of illusion. In my world there was no need for money, there was no cost involved in having your needs met. After all, if you cannot live without something then it’s the duty of those around you to help right? This was what the Church taught us and at that point i hadn’t developed my ability to question authority. Do unto others in my mind appears as socialized medicine does. I do hope I am not as naieve about the truths and hardships with those programs as I was about disability.

In those foggy memories I remember him telling me that his body ached. He and I had a connection, and I shared with him a secret that everyone does. I remember the look in his eyes, he looked so sad. He told me that wasn’t true but I said, with the facts I had making me believe this absolutely, “Everyone hurts all the time. I do. I think my mommy does because she always cries when she thinks no one can see.” He pulled me into his lap, which hurt him a lot. He was the first person I had ever met that didn’t like touch as much as me. He seemed normal to me. He still does. Again the illusion that he would not face discrimination. I had yet to see what that was. That wasn’t coming for a few months.

He didn’t speak, he just looked at me. Then he handed me the bugle and told me to play taps. He never asked me to run outside after that. He didn’t protest my sitting in his library with the books. I know what changed now. He knew then that my body wasn’t really “right”. I’ve had that moment with others. My niece, she has the same genetic challenges I do. I wish I could tell her it isn’t normal to hurt. It is for me, and that maybe is an advantage. I have been in pain since birth. This man of shadows and sorrow, he was not born this way. Does Muscular Dystrophy hurt before it develops? Is it genetic? I should look into this but right now I am running on my own shadows and sorrow.

Being unable to go outside because of the damaged chair has left me fighting that sucking sensation called depression. It got worse as my mic died, so my creative outlets with sound went away. I already lost my visual creativity due to my disabilities. Even typing this I feel trapped. I am in a prison. I wonder, was this man in a prison? I remember his hands shaking as he ate. I remember thinking that it must be sad to shake. Now I do. I just wanted to make him happy. I didn’t ever want to cure his illness, as I didn’t understand cure then. I just liked it better when he would smile.

I held my illusion that disability would not be so bad, if I had what I needed, I held it until I could no longer believe this was true. The first time I gave in and asked for assistance with mobility came after a  year of struggle. It came after I nearly died from dehydration and from passing out in the hot hot sun. It lead to my discovery that I  am literally allergic to the sun. I had dropped out of school and I was no longer doing anything. My doctor told me, “I am not sure we can give you a walker, you may stop moving.” It’s the same line. It doesn’t matter the disability, the same line is used to save the insurance people money or to save the doctor paperwork.

Here is a list of costs incurred by my government by not giving me what I needed in the last 365 days. I suspect this list is common more than rare.

Item                                   Average Cost in USD ($)     Quantity

Emergency Room Visits  $500 just to enter               10

Ambulence Rides              $700                                       10

Tests in ER (xrays etc)    $100-900    (visit total)      40 (guestimation, likely higher. Averaged 4 blood tests per visit and 5 xrays per visit.)

Medicine related to ER visit $50-$200                       13 (prescriptions total, not pills. Average pill total was 90.)

Casting, braces, etc             $500                                      2

Food                                        $75                                         1 (One meal in hospital, the administrator complained in person about my dietary needs)

Total: 30875 * quantities over 1 were averaged between the numbers above

I got the numbers off of the bills the insurance rejected, to try and force me to pay. I did not include visits that were not preventable. Those are just the falls. JUST the falls. This means when I had pneumonia, when I had the anthrax infection, when I had allergic reactions I did not count those above. I fall at least once every two hours that I am awake. I also happen to be having to pee every two hours. I stand up, I walk and I fall. Sometimes I fall enroute and on my return trip. (Pun SO not intended).

The cost of the wheelchair I have been prescribed is listed at just under $7000. I am fighting to save the insurance people money. I never dreamed disability was preventable. I was always aware that pain existed and sometimes you needed help with pain. I never cared about that, until I found out that you don’t get the help you need without a screaming fight that lasts as long as you live.

I am tired of being told I will be less mobile because of a wheelchair. I sit as still as I can so I do not fall off of my couch. With a proper chair, I won’t just be able to go outside, or go pee without falling… I can move, I can wiggle, I can fidget. I may even be able to arrange to go swimming. Swimming hurts as bad as bathing but I love it. I can move freely as if my spine wasn’t slowly being severed by my own body. How can I move, dear scientists turned beurocrats if my legs do not get the signals? Have you found a way to repair my spine without KILLING ME? Or At all? Since nerves once severed do not regrow… why don’t you just give in?

Insurance company, preventative care is cheaper. I wouldn’t need the wheelchair in the first place if you had actually approved preventative care. You are costing you money not me. The true financial burden to the citizens who work (some of whom are disabled thank you) is not me. It is your ineptitude. No, not every ER visit would be suddenly gone, but on average for the last five years I would have only gone FOUR times. Three of those allergies, once for Domestic violence issues.

I miss the illusion that should I ever be in need of anything, it would be there. I miss the idea that I could rest at night without this unabiding terror that should something break like, a wheelchair or my computer, I will not suddenly be cut off fromt he world, trapped in my own home. Even with my computer I feel trapped. The same feeling would be there without my computer and with a working wheelchair. I know this. It terrifies me.

Right now, I am once again suicidal. I already got the help I need to make it until morning. M talked me back to a safe point. Still, insurance people, you should stop trying to murder people by denying them their needs. Stop pushing the idea that an increase in quality of life does not matter. When you or someone you love is suddenly in this minority, you may still be clueless… but I will fight for you, if my hands aren’t full fighting for my right to live.

Denying me a wheelchair is denying my right to live.

The Generic Title that Misses the Feeling

How can I title this blog post? There is no title sufficient for what it is that I am getting to write about. I am home. I am free. I am safe.  No, it is not perfect but a perfect life was not what I pursued. A safe home was. I am sitting on my couch, in my living room, looking at my cats and the art on my walls and all I feel is this burning sensation that is a mixture of relief, joy, and grief.

I grieve for what was lost. The sanctity of love itself is no longer something I can cherish. I may find it again but I will never truly heal from the betrayal of my heart. In fact, this betrayal has given me new layers to my PTSD. Simple things, as those of you who have PTSD know, can trigger it and I must learn my new triggers. Foam Cups. They make me curl into myself and want to scream. I know the reason but that doesn’t make it any better. Time sheets. This one is a problem as I cannot escape time sheets even though I can escape foam cups. I will adapt, I will heal, and I will grow.

I do not know how to explain it but the grief shrinks by the second. William has not run into a wall once here. He did attack the cable guy, who rolled the attack off without harming William and with a smile. I really had a most amazing cable guy. He was patient, he didn’t make me feel unsafe, and the cats response to him was something he found amusing instead of upsetting. He even moved a piece of furniture so it was out of my way. Not his job, he just wanted to.

I have my ramp already too. The last place fought me tooth and nail and refused to put it in. They won, as far as the ramp goes. Little do they know that there will still be an investigation by the Fair Housing people. I may be moved but the investigation will reveal much. The ramp was put in last night, and this means I can go out and in. Right now using the manual chair is hard but it is freedom. There is so much to say. I spent the last week without anything to do, my mind is in a frenzy to be used for more than imagination and organization.

I even dreamed nonsense happy dreams. No nightmares. I actually slept more than five hours, despite my bed not making the trip in one piece. I have crashed on the couch and I do mean crashed. Until two days ago the instant I was alone I would fall asleep. I am still exhausted, the bone deep type that seeps into your marrow and leaves you loathing the waking world for having energy. My bed will be put up tonight. My friend M replaced the mold filled mattress and broken bits, my mother is bringing some strong young people with her and they will fix it.

My mother has come through for me, in such a way that it surprises me. I wonder now if the Zillas our mutual attempts to communicate, or if I am setting myself up for heart break. I think it is both. I cannot however turn down much needed help. Nor will I. My mother’s own trials continue and I can help her if she will allow it. There are specific ways too. I have not fought my last battle either, the place I am living may have fair housing violations, though I managed to get what I needed. If there is discrimination it is based on Race, and I suspect this has been confirmed by my needs being met and others who happen to be another color being denied. It is sad, but, I am the ally of the truth. The truth will come forth, and that is the best that can happen.

I am bouncing from topic to topic again, my poor mother didn’t believe me about the mold inside my waterbed, and her work crew tried to siphon out the water, and now one of their number who sucked that moldy water into his mouth is very sick. I feel sad for him but I am surprised that there is no guilt. I did tell them so. They wound up dragging the mattress outside and cut it open to find it was worse than what I had suspected. I wasn’t there for that but each of them was made sick by the smell. My new water-bed is going to be treated with care, so that it lasts forever. The mattress isn’t gold this time either but is green. I look forward to sleeping on it. No pressure on my body just the softness of a warm cloud. That’s what a good water-bed feels like to me, my pain may even vanish for the first few nights. Perhaps it will vanish forever, as the bed will not harden with mold. The mold had almost burst the other mattress, it was that bad.

I am eating real food too, not just making ends meet. My foodstamps card arrives any day now, perhaps even Monday. My mom brought me Bacon when she heard me mention how that was the first thing I would buy, so now, I am free. As my house comes together I find that my sense of tension is receding, more so now that I have an outlet for my mind. That was a slow torture, I tried to hold it back but when my book reader broke, I was suddenly trapped with just a cellphone for the world. Still, most of what helped was the fact that I could sit outside. No sunshade, a bit risky for my health but, I needed some sun. It’s been five months since I could just be outside without an excuse or worse was trapped exclusively inside.

My mom promised to help me get my garden set up in the Spring. My rosebush and tree need some love, but they will be well tended. I am also going to grow my own strawberries and I was considering pansies. There is much to do before Spring is here but I can dream about it, little flowers all in a bright display right there just for me.

Too this is the start of preparations for Halloween. Today I bought shoes for Winter, I found an amazing two pairs of shoes that fit and then went to the Dollar Tree, a true dollar store, that carries the same stuff as Walmart. There I bought a few decorations for my favorite Holiday. My faith also allows for Halloween to be a very special day. I am going as Snow White. There will be pictures. I can also get my corset now that I am moved, and curtains. I also have enough room in my living room and bedroom for more art. I am going to someday get Nene Thomas’ art for my home. She’s my favorite Artist, I found her work when I was younger and was hooked. I have other favorites but she is the foremost, and her work is also not all that expensive. Some artists want 100 dollars for a print, but I can get small prints for five or ten dollars. How smashing is that? Something that if I budget wisely I can afford.

I have an electric bill now too. I have bills. I cannot hold back the glee that bubbles in me. I have bills! I have almost everything I need and there is little that I want truly. My wishlists already seem outdated and overly full. I need a blender, I should get a recliner that helps me stand (replacing my couch that broke last night) and maybe another book shelf. That is it, excluding wheelchairs.

I even have a big screen TV, it was here when I moved in. I found a windchime in my boxes of stuff too, one I thought long broken, and so I even have music in the wind. There is so much that I am getting rid of, I may be able to cover the blender after that sale.

I will write more later, I have to write a How To with caregivers, as there is some information there. I am changing agencies, and that will be the source of more knowledge. K my wonderful caregiver and I exited the honeymoon period. The change of Agencies shouldn’t cause me to lose her however. We worked out the really minor issues and the main stress with having a caregiver has to do with the paperwork and scheduling. That means I can leave that over with someone else and be much calmer.

Now I plant the seeds in my soul, for my soul and heart are entering a glorious spring after their long winter. The seeds will grow into happiness, joy, and a further understanding. I will share the fruits that come from these with the world as I have shared all I am and know. The changes that he wrought will only make me stronger and my inner garden more beautiful.

Firing your Doctor

I followed a link in a blog and it lead me to Alas, a Blog. I found there a well written essay on undiagnosed chronic pain. The focus is on women and is intersectional because it deals with discrimination and medicine. As any disabled person knows, doctors do not always listen. It is easier to get a diagnosis when they are fresh out of Med School, but that diagnosis can be wrong via wrote of inexperience. I have written two other How To posts, and this is the third. How do you fire a doctor?

Step 1. Determine why you do not feel you are recieving adequate care. At times this comes from a doctor being frustrated that you are not magically cured of your congenital issues, and then losing their effectiveness. Other times this comes from sitting in the ER for three days wishing you could just get some help, being told “No drinking or eating, the doctor might need to operate” and being told that they can see nothing wrong with you, without tests.

Lets start with the latter first.

Step 2. Become the Bad Patient, Angry Cripple, or Annoying but Empowered Patient who knows their body better than their doctor. Most people when seeking medical treatment have a vague idea of what is going on already. They know where it hurts, and yet it is not really their job to know why before they get to the doctor. Most people in the Emergency Room are often disoriented, queasy, and focused on a fast cure. That is the tenet of the ER. When you do not get your care you must ask, as calmly and politely as you can, “I want a second opinion, can I please see another doctor?”

Expect anger. No professional wants to be second guessed. None of them like it, but some will gladly send you to see someone else.

Step 3. When they decide to ignore it and try and send you home, you might need to call an advocate. If you are disabled it is easier to find advocates, but if you are able find someone who is coherent to help push for your needs. This step is best done before you are in the ER, but, sometimes you can find a patient who knows how to handle it and is willing to help you. This advocate will help you repeat your request for a second opinion over and over until you finally see another doctor.

Step 4. If you can, remember to breathe between each step, each sentence, to try and retain a claear head. It is horribly annoying but remember losing your temper will make it worse for you, and no one else.

Step 5. IF you are in an Emergency situation and are at risk of death, DO NOT GO HOME. You need to stay there, even if they want to send you home. You might need to sign in right off, after leaving. If you are uninsured this can raise your bills. This is horrible, but, if you are in danger of death money is not an object.

Returning to our first scenario, firing your Primary Care Physician:

Step 2. Write a letter to your doctor, you are not sending this letter but you are detailing out why you do not want them to see you any longer. If you are insured you might need to write a letter to your insurance explaining these very things. You will have to explain to your new doctor why you left your previous PCP (Primary Care Physician) or Specialist if they are in the same health care system. In many cities one stands above the rest for their level of care, my personal choice is to stay with in the system I know and trust may differ from yours.

Step 3. Try and find a list of approved doctors with in your insurance, if you have insurance. If not, then, this step still applies. Find a list of doctors. Depending on how you work you might want to contact your local medical review board for a list of physicians with complaints against them. In America this is legal, if you are not in the US, you can still find this information. Some of it is available on the internet. If you still trust your previous doctor, try asking for a recommendation.

Step 4. Write a list of your known medical complaints, when and where you were diagnosed, if you have any preexisting conditions, and write a list of expectations for your doctor. Remember to stay reasonable, you cannot expect your doctor to do anything that goes against their personal morals or professional morals.

Step 5. Make the appointment. If you do not feel safe, do not stay in the appointment. You have freedom, you can leave at anytime. IF this is the case, start at step three.

There are other times you might need to fire a doctor. Very rarely have I said to a doctor, “You are fired.” I have however, said it most in the ER. Remember, firing a doctor does not black list you from treatment. It does not preclude you from proper care, and it does sometimes make a difference.

Your pain is not in your head. You can find an answer, do not give up. Remember, there is no such thing as Hypochondria. You have the right to proper medical care. If you are uninsured most hospitals have payment programs, or will even waive the cost if you are unemployed or low income. No money is not an excuse for a lack of care. In the US (sorry I just do not know the other countries laws well enough) you are guaranteed medical care in an emergency, and can often obtain it outside of one.

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