I have talked about this many times. I would like to take Paratransit to my doctor appointments, but it’s $4 each way. The Department of Health kept sending me a punch card for the regular bus….but my Paratransit pass already lets me take the bus or TRAX for free….it just doesn’t let me take Paratransit for free.

I don’t have enough money to pay $8 for transportation each time I go to a doctor, test or procedure. I tried cancelling the health department bus pass several times. It just keeps coming in the mail each month. And each time I asked Medicaid I was told to ask Paratransit….while Paratransit said to ask Medicaid for the free Paratransit rides. Many, many times I was told there was no such program for Paratransit, just for the bus.

Yesterday the Paratransit driver was confused about why I was only going to the hospital, but not home again. I told her I couldn’t afford it. She told me about “Medicaid stickers”. All this time NO ONE had ever said there was such a thing.

Oh. My. Gosh!!!!! Yesterday I called the number listed in my Medicaid handbook for transportation. They told me to call UTA…the operators of TRAX, buses and Paratransit. Before 8 this morning, I was woken up from a deep sleep by UTA calling me back to say no, call Medicaid. I went around and around for hours between different offices. Each place said the other place would help me.

FINALLY, I got a woman with compassion. She said she would make calls for me. She got ahold of a woman who both called UTA to confirm my eligibility and then authorized the stickers. Breaking through the bureaucracy was like going on a secret spy mission. It took days and hours….and the last year.

When I think about all the times I struggled through snow, ice, wind, sun and extreme heat to get to and from appointments, I am absolutely livid. When I think about how much easier it’s going to be now, I am ecstatic. What good are these programs if nobody knows they exist?

My next challenge is to have my Paratransit pass changed from temporarily unrestricted access to full access. Now it has to be above 80 or below 40 degrees or with snow and ice. My neuro got me full access until the end of July. It’s surprising how many really hot days start cool. If my trip originates before it gets to 80 degrees, I cannot book a trip. Just like everything to do with UTA, the rules are very convoluted. Sigh…..

Ha! I thought that was the highlight of my day. Late this afternoon I got a 4 page pdf from my neurologist. He outlined my past with other docs and my present with him. He talked about my MG crisis and he told the judge I have MG and need IVIg because it’s the most appropriate treatment for me. He politely discounted the insurance and hospital that are trying to say I have conversion disorder, not MG. I thought it was a great document in support. If the judge believes the corrupt corporations over the solid medical documents, I will be totally convinced the system is evil. Next week will seal my fate in Utah. Kind of nerve-wracking!

It’s a full time job to be disabled. When I called the health department today, the woman said I was due to answer a questionaire. It was both sad and pathetic to hear my answers to things like….have you been hospitalized in the last year? Have you seen a doc more than 6 times in a year? Would you describe your health as poor? And a bunch about specific diseases….most of which I have. I put in way more hours feeling awful, visiting docs, going to the hospital, filling out paperwork and all that jazz than doing 2 full time jobs. It would be sooooooo much easier to be healthy and work for a living! I am tired of being disabled.