Desperation

 

Pastor Jon,
    Recently I was diagnosed with a rare genetic defect. "finally!" I thought to myself: "A name to my strange reality!" The label was the direct result of 10 years of tedious testing in some of the largest medical centers in Ohio. The combined efforts of OSU Wexner medical center specialists, Dayton children's, good Samaritan hospital, and extensive testing (nerve biopsies etc) at Cleveland clinic; led neurologists to the conclusion that I was a HSAN (hereditary sensory autonomic neuropathy).

        HSAN is sometimes callously and colloquially referred to as "pain insensitivity". The latter is ridiculously inaccurate for persons who actually have the disorder, we are very emotionally sensitive and often have a rich inner life that is difficult to translate to the outside world. 

    HSAN literally means I was the recipient of 2 recessive mutant genes, 1 from each parent, that left me dominant and defective. My odd mutation, which had remained dormant in my family bloodlines untill now, makes me unable to develop small fiber nerves properly.

     I register pain, just my interpretation registers a little differently than the majority of our species. I'm missing the ability to maintain stable body temperatures, regulate my vital organs properly (ie my heart is sometimes too dumb to know when to beat, my stomach to digest, my lungs to breath...). My nervous system or communications superhighway, so to speak, is mutated and doesn't always allow messages to go from my brain to my body parts.
 
       I often am in danger because I can't tell if outside temperatures are dangerously low, or water temperatures are too hot, so I count on machines heavily to help me. I have an inability to know if I'm injured or am suffering infection until my condition reaches critical mass.

      HSAN is a crazy strange disorder because most sufferers don't "look sick". In fact to an outsider not paying close enough attention, we may appear uber tough or even invincible.

    Appearance can be deceptive. HSAN's penetration is always complete, but it's expression is variable. The rare defect effects every organ and part of a sufferers body, without exception. HSAN deformities are irreversible and can not be corrected. Treatment is symptom based, and most HSAN kids die young.
 
       That being said, I'm 32 years old. I have reflexes and can feel some pressure. I am hyper fast and rather coordinated. I was a high level athlete for years and a college graduate. I suffered from scoliosis and tmj as a child.

     My brain seems to have had mild prenatal damage and rewired itself, to insure my survival. The rewiring is called Aspergers high functioning autism. 

   I have POTS (postural orthastatic tachycardia syndrome) which is a common dysautonomia where the vagal nerve in the heart has gravity adjusting problems when body position is altered. When I stand up, blood flow to my brain is drastically altered and the lack of blood flow can cause syncope convulsions (a violent occurrence that appears worse than grand mal seizures, I am told).

     I have chronic migraines and tremors. I have no pinprick perception which means I can not feel gentle touch. I have tonic pupils, which cause an unprecedented amount of drug tests, and unwarranted accusations on the part of medical practitioners. I'm lacking proper taste buds as well. My endocrine, gastrointestinal, reproductive systems are all dysfunctional.

     Because I often don't" look sick", I am recurrently denied basic medical care. I get turned away from local ER rooms and hospitals, in spite of severe medical distress. The combination of apathy coupled by personal attacks often leave me without simple things like antibiotics for infections. I've had teeth abscesses that lasted 6 months before I could receive 1st treatments. Although anaesthetic is not necessary for stitches, root canals or teeth extractions... I still am often denied treatment.

      I am disabled and on Ohio medicaid. The mandatory managed care company, that has been assigned to me, managed to force me to go 11 months with a 0% ejection fracture-- not working because blocked completely by gall stones--gallbladder. If OSU surgeons had not intervened on my behalf, I would still be frivolously arguing in state hearing to get the emergency surgery.

    My HMO, Care Source, refuses to pay all bills. The company intervenes to try to ensure I don't receive medications, tests or procedures. Care Source states that there is no "medical necessity", and denies me any and all treatments. I have to wait many months for state hearings at Ohio Job and Family Services, just to receive medications.

    I have nutritional deficiencies and am financially strapped to the max; barely able to afford shelter and food. The local antipoverty place: Sources; was recently caught "misappropriating funds" (Ohio way of saying they stole millions of tax payer dollars and refused to give it to the intended).

     So, I am left in a community without programs or resources. There is no public transportation in this part of Ohio. And because I have large student loans looming over my head, and collections agencies attacking me on AT&T's behalf, I have been applying everywhere locally for work. No one will hire me.

     I am stressed and dont know where to turn. My mom feeds me each day, because I can't afford a full month of food. She helps me get to doctors appointments, because I can't afford a vehicle. I don't know where to turn, and often feel my struggles and sufferings are futile. I am sick and sad. Have had vomiting and diahrea for over a year now. Changing my situation is beginning to seem hopeless.

      With the extreme Ohio heat beginning, the specialists at OSU are warning me that I am a high risk for suffering hyperthermia. The doctors are estimating, that post vassal nerve functioning becoming dependent on medication stimulation, that... I may have 15 minutes of over 75°, before heat stroke sets in. I have been informed that I must purchase a medical ice cooling vest (non evaporative). The latter costs in excess of $200. I don't have the money and don't know where to turn.

    Two federal government rare disorders agencies won't help me because I live here in Ohio. Care Source, my Ohio medicaid insurance company, outright refuses any funding. I tried the Ohio Ability center in Toledo, and Mercer Job and Family... both said there is no funding. I tried Red Cross who informed me, that they don't help people like me, with genetic medical conditions. I contacted United Way, their closest chapter is in Auglaize County, the woman apologized, but couldn't assist a Mercer County resident. Sources has apparently stole all the funding and has nothing left.

      I have tried social workers all over the state, Foundations included. The Celina mayor got told there are no programs for disabled, other than disability and food stamps. Bob Nude got told all disability funding in Mercer county was shifted to Gateway and was converted to support the local drug addiction problem. Local legal aid informed me that there is a plethora of criminals that require and demand their immediate attention... AKA they coped out and won't help. Our Home, turned me away stating medical needs is not pertinent to their organizations cause.
 
      I have contacted Ohio Representatives, and Senators. The Attorney General and the Governor's office; all of which yielded them to apparently have  heated conversations with Care Source and Job and Family Services. Care Source is now sending me six rejection letters refusing medical treatment in one envelope, to conserve on money expenditures. Job and Family lowered my monthly food allowance to $129 a month (and dropping). My efforts seems circular and to lead nowhere.

     I've written letters to politicians, including Michele Obama. I have emailed TV talk show hosts, reporters and newscasters, begging media for some help as to where to turn. Tim? The pastor in Celina who funds Call Ministries, gave me all of my furniture for my apartment. He took pity on me and gave me a mattress to sleep on, I was sleeping with blankets on the floor.

     I have contacted NYU, Vanderbilt, Mayo Clinic and numerous other medical centers looking for research programs to enroll in, but nothing worked out.

    I've been trying desperately, Jon. Everyone has informed me that they are very sorry. Apathy doesn't provide me with food or necessary medical equipment. I have been trying to make due with creations that almost mimic medical gear, but I need help. I just don't know where to turn. I need a medical ice vest, and have no resources. Are there any programs that I might have missed or overlooked? I feel like I've tried everything, to no avail. Any ideas?

     I am frustrated. I feel like I have suffered so long, and yet people are relentless and show no remorse or willingness to actually help. Has god left us?

   Has he abandoned his children in need? Did he escape the narcissistic people, leaving the self absorbed to destroy all that was left of loving human life?

    I feel alone and scared. Even the former pope said he thought God had been sleeping for the last 8 years. Is there somewhere to take refuge and find hope, from men who hoard resources? In need, heat is extreme. I think when I die, God and I are going to have a serious talk about this!

Sherry

Thank you to Jon and Steve from Wayne Street Church. The congregation answered my pleas to them. My need for a medical cooling vest was met by the extreme kindness and compassion of the church and its practitioners. I appreciate their help immensely and am eternally greatful.