When the Doctor is Afraid

Ah the joys of seeing Specialists. My dermatologist today was afraid to treat me. It took me a while to realize what he had done. “Everything looks normal.” Patches of flesh, pustules, moles that look like the poster children for little melanoma and the remnants of the allergic reaction to Sunblock… all are normal?

He barely skimmed my chart, he didn’t want to touch me or look at me. Instead he said, “In Six months, when the insurance covers another visit come back and see the new dermatological plastic surgeon. He can take care of those moles.” Moles he had declared normal.

I did get a new prescription to try for the Hidradenitis Supprativa. A topical antibiotic and an oral antibiotic. I am about to take the first dose. I had to drain the blisters first. It wasn’t until I was leaving the hospital pharmacy that I snapped onto the problem. It took the strangest behavior I have seen at a hospital for me to click that the entire experience belonged in the Twlight Zone.

I was the invisible doorstop, a woman tried to shoved past me with a cigarette in hand and I blocked her. I didn’t have to move an inch to perform the act, I just had the entire width of the chair. I can’t suck it in, and as I choked on the smoke of her freshly lighted cigarette I let myself snarl. “Put that damned cigarette out. Are you insane? Taking a lighted cigarette into the hospital could be considered assault.” I didn’t have to think about my words, I just let them flow freely as my mind snapped the puzzle pieces into place.

The world had gone mad! The madwoman did thank me for stopping her. She stubbed the cigarette into her hand and continued her journey inside. I shuddered while seeing the odd spiderweb connections between her obvious challenges and the doctor.

I have three rare skin conditions, additional sensitivities, and other conditions that are also genetic and rare which can change how my skin reacts. I understand the doctor not wanting to treat me. I just wish he had been more direct about it. I am not afraid about the moles he left alone, but, I do find it odd he insists I see a plastic surgeon turned dermatologist. I will obediently have the mole cut off by the better man, but, what if he has the same hesitant fear?

I have run into this a few times. This is the cause of my high Doctor Turn Over Rate. They quit working and usually I fire them. They either run out of coping ability, they run out of knowledge, and they stop working. This one at least offered some suggestions but all were redundant, stymied by my allergies. He didn’t even try.

It is disappointing but I have my vanity for a bit longer. After the appointment my Person and I went to see why his check was short and as a result I wound up getting to eat a bit of fast food (yay Del Taco being Gluten Free) and a pair of clip on earrings to supplement my new ear needs. The dermatologist seemed competent but more comfortable with the able bodied woman or man who doesn’t know much about their flesh. He spent most of the appointment condescending about how Moles don’t exist. I let him, and when given the option of having him cut my head-mole down a peg or waiting six months to have it done right? I chose to wait.

What can we do when our doctors fail us in this manner? Sometimes we have to let them fail. He gave up the option of learning, of trying, and now if my head-mole turns out to be an extensive tumor as the one on my face was, the glory of removing a rare and still unnamed type of tissue is not his. It goes to the next doctor. That is a bit of comfort, as not every doctor is emotionally qualified to take on the harder cases.

He only failed me by not being upfront with his comfort level. When a doctor is afraid, it’s okay to let them go. I forget this at times. I forget that a doctor passing up the golden opportunity of treating me can be a good thing. If your doctor is too afraid, they will make more errors. They will take longer to find answers. I know, as you journey from doctor to doctor hunting for answers this feels painful. It is still better to let some doctors pass and to have other doctors treat you. I would rather have a wait of six months than permanent scarring with recurrent surgery because my doctor did not make the right choice.

For the comments section, feel free to add your own experiences with doctors who are afraid and doctors who fail.

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.

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