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.

How Rare is Rare?

When every medical diagnosis I have is considered rare, I want to know how rare is rare? Ehlers-Danlos Syndrome, Raynaud’s Syndrome, Celiac Sprue… the entire list is much longer than that and as of yesterday has a new contender. I found myself laughing when my doctor said, “Well, It is rare… but there is a name for the skin condition you have.”

I wasn’t even aware I had a skin condition. I always thought I was just dirtier than the other girls, and that my skin just sucked. I used to shower up to six times a day, though that made little to no difference in the quality of skin. I have lesions, blisters, boils and abscesses constantly. I thought this was normal, and that everyone got them at least sometimes. The name of this condition? Hidradenitis Supprativa. This condition is considered an actual disability according to the government.

I know why personally. For one, there are days when I can barely move my arms and walking, beyond the agony of the broken bones and hip issues I already have can be made worse by the damaged skin in my groin. Psychologically some of my most depressive days are the result of being infected, sweaty, and often worrying over spreading infection to others. Now that I know the name of the disease and have some knowledge I am aware that I am not going to infect anyone with it. It is rare. It is genetic.

I want to know what the mortality rate is with this disease. Some might say zero but I remember just wanting to die when I had my first really bad abscess. I was at work, and my nice shirt was ruined by the pus and blood because the boil burst before my break. I hid more shame, and beyond wanting to hide, run, or just cut my breasts off I considered killing myself. The never ending work of trying to get everything done, trying to be clean enough? That day I could not fathom selling anything, hefting the heavy boxes of dishes, and what about the smell?

Infection is not a clean smell. Neither is sweat. Being a teenager I never felt pretty. It took me becoming an adult to start seeing past the little things. Still, attending a friend’s wedding my thoughts were how to make certain my formal wear would not retain the odor of my sweat, on how to make sure that no one could tell. I am now entering the mourning stage of a new diagnosis. I mourn the times when I cut out my own abscesses. I did that last week. I have never once considered seeing a doctor when my breasts split open. It happens so often, that it is normal to me to self care.

This brings me to another point where I was accused of Self Mutilation as a teenager. Beyond having actual issues with that due to the severity of my depression, there were times when I was told I had to have cut myself in order for my body to be so gory. I was sent to a therapist for it. My body has scars, open wounds that have been around longer than some of my siblings, and my mind has been shaped by this disease.

The other effect of more rare diseases that are incurable is this. Can I escape being disabled? How inevitable is it for some of us to wind up with our bodies breaking us down? My body is out to get me. How can I function like this? What is next? Is breathing going to become a forbidden act because of something rare and genetic?

How can something like this really be rare too? Some of the research I did today indicates it is related to acne, though it is not acne. What if it is not as rare as all that? What if more people have it, undiagnosed and are losing out on their quality of life?

At this time there is no treatment. I will be updating my disabilities page, and I will find ways to help others like me. The more people who know, the more the odds of a treatment being created increase. I currently treat the breast area with a steroid cream, though, this is dangerous to do for your genitalia, and therefore half of my effected area is untreatable.

There is nothing that relieves the pressure, beyond bursting the abscesses. There is nothing that relieves the burning sensation, and there is nothing I can use to cut down on the sweat. Sometimes saline solution helps to dry me out, but, there is nothing that has a permanent or even reliable effect. Antibiotics have helped some, during the worst part of the cycle, yet not for me.

I am tired of being rare. I am tired of waking up in the middle of the night and squeezing puss out of my breasts. I am tired of denying myself sex, when I truly want it, because I fear being disgusting or the pain is too great. Sex is important to most people, me included, but my body is attacking itself and eventually my genetalia may be scarred so deeply that I can no longer function sexually.

In a long term relationship, this has an effect. It is not positive. As a woman, I have had a lot of challenges facing my femininity, partly because of this disease, but this adds another facet. If I cannot pleasure my partner, and vice versa, what are the long term side effects psychologically?

I am rare. I am one of the rarest people you will ever meet. My pain is rare. My skin is rare. My eyes and hair, and my entire body is a rare example of surviving despite it all. So is yours. So is the man on the street corner in the business suit. So is the single mother. Rare is not rare at all. For every diagnosis of a rare condition, countless others are never discovered. Statistics are faulty, when not every case is discovered, so how can we truly understand rare?

Info Links on Hidradenitis Supprativa:

http://www.hs-foundation.org

http://www.hs-usa.org

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