Diagnosis! Gotta Catch’em all!

I am in an emotional upheaval. I found out today that Block Insurance does not have any non Walmart Eye doctors. All of the numbers they gave me were between disconnected or offices without actual vision care professionals. I also was told to choose between Walmart and Eye Masters which is the Walmart of eye care. Would you go to Walmart for diagnosis and treatment of anything medical? I won’t. I want options. I want to see a doctor I trust, not Mr. Walmart Doctor.

I spent several hours on hold, trying to get an appointment. My right eye has an existing hole in the retinae, but no one wants to treat it. Now that hole has some little friends. I can see them, the spots grow and most of my vision is gone in that eye. I can barely see my monitor, and am defendant on the Windows built in Magnifier to see. I no longer read paper, I can’t see it. I no longer watch TV. I listen to it. I did reach the point of yelling on the phone.

The conversations were comically inept. “Thank you for Calling Block Vision, what can I do for you today?” “Yes, I am calling to try and find a provider. I …” Interrupting me, “Did you use the automated system?” “Yes, and the numbers were either invalid or the offices wanted to charge me despite my qualifying for zero copay. I also am not comfortable with Walmart for my eyecare needs. I have some advanced care issues.” I made a mistake. I admitted I need more than they want to offer.

“Spell your name.” I did. “You can’t spell your name like that.” Since it is my name and has been for a long time, I would not know how to spell my legal name. My last name is the issue of course, not the first. I spell it again, and get the same response. I am done. I want to make this person cry, I want to rain fire down upon them. Instead I take a deep breath. “Could you please transfer me to someone else?” I did not ask for a supervisor yet. “If you cannot calm down I am goin to hang up on you.” “I am calm, I just asked for you to transfer me to someone else, I do not think we are communicating well.”

She hung up. I kept getting the same person too, and after six calls I let go. I was already in tears so I screamed. I cussed. I told her exactly how good she was at her job, and since they claim to record these conversations, I hoped her bosses listened in and fired her. Not my best move, but, being treated like crap gets to me. The last thing I want is to be blind, unable to move, and unable to hear. I am being told that all that I and anyone else who is on Medicaid (mostly children) deserve is WALMART?!

Walmart screws up everything. I want a real doctor. Not some brainless person who barely managed to graduate. I want someone I can put my faith in. Wouldn’t a real doctor be hired somewhere else? I am not saying that every doctor gets the cushy jobs but I want access to the doctor of my choice or at least a variety. I do not want to be told I am insane for desiring trust with my medical professionals. I do not want to be told I have to pay out of pocket because I am low income and have other medical issues. I want medical care.

I want to see. I miss being able to see the faces of my friends clearly. I miss being able to see far enough to give safe directions. I do not drive but, shouldn’t I be able to see the end of the hood? A van doesn’t have a very long hood. I also want to do more than push and push to try and get proper care. I am so tired. I am tired of having to advocate. I have been advocating for people and fighting my entire life. I have always been the caregiver. I want someone else to do it.

This doesn’t work however. I can’t just stop advocating. I can’t because I do not know how. I instead took the time to calm down enough to call the Governor. I left him a voicemail along the lines of this, “Governor Richardson, I am a voter who encourages others to vote, “I always start out with the secret threat that if you do not help me I will not vote for you. “I have been trying to find an eye care provider.I recieve SSI benefits and am on Medicaid via the COOLTS program. You have influence here, the program has farmed out their providership for vision care to Block Vision. Block Vision is only allowing a selection from Walmart and Eyemasters doctors, I cannot get an appointment with them and my vision is degenerating. I need your help to fight for your constituents.” I left my number, and I know I should have been calmer but my voice likely gives away my frustration and the fact that I have been crying for the last few hours.

I cannot see. I am thankfully able to type with my eyes closed but there are errors. What if I wait too long to see someone and wind up unable to save my sight? I am not faithful in the system. Right now I am afraid I will be deaf, blind, immobile, dealing with the Autism, and autoimmune. I have one of every type of disability, it seems. I am losing hope today.

If I want to pay for my eye care out of pocket, I can manage that how? They want more money than I get a month. Why are we choosing between Rent, Medicine, or Dental/Eyecare? Why is it you can eat but not see. Oh wait, I can’t afford food. I am a celiac. Silly me. Bread is at least seven dollars. I don’t buy bread. I don’t buy anything beyond just enough meat to survive. I am HUNGRY but there are no food programs that can accommodate my allergies. I am greedy to want that right? I am greedy to want someone to help me. I am greedy to want a break from advocacy. Right?

No matter how many other advocates there are, I feel alone. I feel as if there is no where to turn. I have to do this alone. I have to do this by myself. Who can I ask for help? What would they suggest that I have not done? I am all alone, as every advocate is at some level. There is only so much you can have someone else do for you.

It isn’t hopeless. I am after the jobs of the employees who hurt me today. That means someone else can be hired if they are fired for their incompetence. This might seem cruel, but, isn’t it just as cruel to mock someone for wanting medical care? It is just as cruel to treat someone like garbage because they are disabled. I have HUMAN rights. I have CIVIL rights. You want to mess with me? Go ahead. I bite.

Edit and End Notes:
I do not care what your God or Bible says about being alone either. I have been preached at, as if somehow my choice to not pray every time some idiot steps on my civil rights is my fault for being a non believer. I do not believe religion has much bearing on the affairs of the state. So, yes, this is a snarly article, and yes I admit I messed up by yelling and plan to keep fighting but leave your god out of my life. I haven’t needed your god to chance things for myself before, I will not need YOUR god now. Thanks for respecting my religion.

It is not religion that is shared when you ask an opinion or vent to me. I offer ideas. I do not expect you to worship me, my gods, nor is this the same as pointing out that I surely would feel better with YOUR God receiving my prayers. Seriously, are your gods somehow starving to death or something? I know plenty of people in those religions who are. So keep religion out of it. You won’t find my religious identity posted clearly anywhere.

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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