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.

Ability and the Computer

My eyes are crapping out. I have a hole in the retina of one eye and neither can focus on anything near or far. I haven’t been able to read paper without great pain, and sometimes not at all, for over a year. Last time I saw an eye doctor she sent me to a specialist who ignored me, hurt me, and told me nothing was wrong and to ignore my degeneration.

The computer is a bastion of information for me. I have not seen the TV in a long time. When I really like a show I will risk the headache from eyestrain. Usually, it isn’t worth it. Even the computer is starting to fail me. Thanks to William Shakespurr, who turned out to be a Special Needs Kitty, I discovered a new command on my keyboard. I am sure everyone else knew about this but, hitting control and moving the mouse scroll button (that wheely thing in the middle) changes the text size in Firefox. Sweet heaven! I can actually SEE what I want to see. Not only does this magnify the text, without the annoying magnifier that Windows has Built In, but it magnifies the images too. Often without over pixelization, unlike the Magnifier.

If only I could do this to my TV. I am wanting to save for a huuuuge HD screen but, that is unreasonable at this time. My Person and I discussed it, yet with the economy he is having trouble finding a second job. My income does ascertain the rent but it is still $20 short. Without his work we do not eat. Without his work we do not have shelter. I hate SSI. They tell me I should be able to live just fine on it, but I do not.

My computer has helped me discover things such as, I should have a regular old wheelchair. Electric in my case is regular and old fashioned. I do not like the way scooters work. They are not really the proper adaptation for me. I may have to wait five years to get a proper wheelchair. The scooter turned out to be a good stepping stone.

I only discovered the notion of wheels on my butt when my friend came to town and brought his recently deceased mother’s manual chair and insisted we use it so that I could keep up. I actually did things four days in a row! Sure, I could not push myself, I tried and dislocated both shoulders. I had to be pushed and hated that, but I loved being conscious of my surroundings.

I even had enough mind power to rebudget my cash so I could buy a sword cane. That wasn’t quite enough to win me over. What happened next was a camping event with the SCA. There was no way up the hill to the camp where my friends were, I had to choose between volunteering at the event and actually seeing people I missed. I had to keep my word, and therefore I was stuck working. It was exhausting and I kept wishing for a way up the hill.

Another visit from a friend and we rented a wheelchair, also manual. I never considered the option of a scooter. This one was less comfortable, broke when too much pressure was put on the handles, because of a lack of a curbcut, but, I ran into that energy thing again.

My doctor looked surprised when I broached the topic. It took me almost another year before I had the guts, but I was dragging and my best memories in recent years consisted of rolling. I no longer shopped in stores that did not offer me an electric scooter, and I was missing out. I never did anything. Part of the challenges that would follow retained that sort of reality for me for a long time but I got my scooter. I was allowed to choose my model, and after a month of research on the computer I chose my Legend XL.

Now I miss it, and the computer helped me discover I am not the only one who has had a defective tool. I am working on finding the courage to ask for legislation mandating a quality level in assistive devices. Most are ugly, and most break fast. They are also over priced. Government regulation could make it where insurance isn’t needed for a simple bath chair. They denied me mine, a friend bought it so I could bathe.

I am free of misery now that my quality of life has increased, yet I am finding the loaner scooter painful. It hurts my body often, and has helped me seet he flaws in my legend. It will always be wanted, and if we can repair it the Legend will become a camping Scooter once I get my regular chair but I cannot handle the jerking of the tiller. Often it is torn out of my hands, or my back hurts from leaning forward to reach the supposedly adjustable tiller. It isn’t without great force applied. I do not have great force. The loaner does the jerking thing too, nearly breaking my thumb once. It also doesn’t handle little things like pebbles or cracks in the sidewalk well at all. The seat is the one off of my own scooter, required medically to be transferred. The little loaner scooter also fails to start on cold mornings. I miss my early morning events. I miss doing things because Loaner doesn’t hold a good charge. It almost died during a Toastmasters meeting between the lectern and my spot. Five whole feet.

Thank You is Sometimes All You Can Say.

This feels strange, to write. I am going to go for a crown. It took me a very long time to become aware of my own value, and through the Ms Wheelchair USA program, I can not only show my own skills and confidence but I get to hopefully inspire other women and men to be confidence. I have conversations daily with my friends, sometimes strangers, and every so often in the mirror with myself when my pain has me grasping for strength I am sure I will not find about confidence and value.

I minister aid to those in need. Today I recieved two gifts. One, is the first donation for my campaign towards the Crown, and the other was a bottle of holywater. I will not discuss my religion here, as I do not think that has bearing on who I am or what I am capable of doing, but I see this as a beautiful thing.

The woman who sent me the holy water is one of my strangers. It was just before Christmas and I went with a friend to the bookstore. Meandering we agreed to meet at the coffee shop and I went rolling through the shop. She looked happy, except her eyes. I remember how utterly void of joy they were, and she couldn’t seem to stop staring, so, I struck up a conversation with her about the books on the table. She didn’t take long to open up to me. I remember my utter shock at her telling me she was going to commit suicide. I responded before I thought with, “Why would you want to do a thing like that?” After an h our of conversation we hugged. I rarely hug people because it pains me, but, she needed a hug more than anything else. She told me she wanted to send me a package and after meeting me she couldn’t kill¬† herself. Our conversation touched on the spiritual, but mostly her need to be someone. She had forgotten herself for years to be a mother to a disabled child, and now her own grand child was disabled and she couldn’t fathom happiness for anyone. Today I recieved a thank you card, and the bottle from a local blessed spring. It reminded me of my power to inspire people. I did not need a reminder to know I am good, but, the reminder that I can touch people by being who I am was a surprise.

I then talked with a male friend of mine who often forgets to love himself. For years he has battled this and tonight I shared with him how I learned to love myself. I started telling myself three times a day in the mirror I love you. That was all I saw myself, when washing my hands. Then, I wrote on my stomach, legs and anywhere that was invisible to others, I love me. I love me. Over and over. It took a long time, then I started to believe it. Mike and I met over something daring, I did something that I might be ashamed of now, online as many others do. The evidence is thankfully washed away by server errors and time. I had made myself do something out of character, to see what would happen. I never went back in my shell. I instead became a real girl. No more hiding, no more sorrow. Shortly after this I broke my back, and had to resume chanting how much I love me. I still do some days, to help myself along when the pain burns me through and I forget that I am more than a disabled chick who can barely walk. When homeless Mike fed me, he even helped pay for Sprite the Service Cat’s vet bills. He is amazing, and, I hope that he remembers that. He reminds me of who I used to be, and even admits when he is wrong. A very rare individual whom I appreciate. He is who I turn to when even my well worn tactics fail, he can always make me smile and is the Brother of My Soul. He is greatness himself, and proved to me, before any other male could, that not all men are evil. Without him, I would still be fighting daily to not feel afraid in this world. Instead I feel love and warmth even in my darkest hours.

Then, I went into my favorite IRC, dedicated to graphic programers who make animal skins for IMVU, a 3D Instant messenger and started talking with a brilliant young woman. Her name, posted with Permission, is Weesha. We talk often, though the last few months before I started this blog that contact was rare due to no internet connection. I told her of my discovery, just before the deadline and without enough time, this year, to dedicate to my new goal of Ms Wheelchair USA. We brainstormed for ways that she can help me to spread the word about MWUSA, to reach my goal, and so that people can learn about my Platform. I haven’t finished fine tuning the platform yet, but tonight she spread the word far enough that the first donation was made by Jen, a person of similar interests, taste, and a person who deserves a very special thank you. My wonderful day started off in tears and has blossomed into a garden of delights.

I just want to say thank you, these people are beyond special. May any who read these words have as dear friends and family as I have. They feed my soul, they nourish my dreams, and wish for the dreams of all to come true. They deserve as much as they give. Each one has their hopes and dreams and this, dear readers, is my hope for them.

For Information on Ms Wheelchair USA please visit their website. There you can learn about the current Crown holder Beryl Holzbach.  I saw some of her youtube videos today and was brought to tears, mourning what is, and hoping that her advocacy brings great strides to the medical field.

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