Sunday, April 3, 2016

Some Days Just Suck

There are days it just gets to me. Being stuck in the apartment all the time, only going out to doctor appointments and occasionally getting to go to Walmart. I have no life. All of my friends are on the internet. I can count on one finger the number of people I ever actually see in person that aren't 1) my mom, who lives with me, or 2) medical related.

I don't really like watching TV. I like Jeopardy, and sometimes documentaries. I read a lot. My brain is turning to mush. It is hard not feeling depressed when you are so isolated and alone.

I am on what is called a Medicaid Waiver program. The program was designed for people with a lot of medical needs to be able to live in a place of their choice, as opposed to being forced to live in a nursing home. Good plan in theory, but has a lot of problems in reality.

I have several medical conditions that I live with. Most stem from having Lupus, in one way or another. I am an autoimmune overloaded mess. My body is attacking its own self. I am almost always in pain. I have seizures frequently, despite being on anticonvulsant drugs. (Seizures also prevent me from driving. Not that I could afford my own car, but still.)

I became completely disabled in November 2002. I was taking a drug called Depakote for seizures. It made me very sick with pancreatitis. While I was in the ICU, actually the very next day, I was put into a medically induced coma and intubated. I developed ARDS, which is really serious and has a 40-50 percent fatality rate, despite nobody ever having heard of it. Jim Henson died of ARDS. Rue McClanahan (of Golden Girls fame) and George Michael both are ARDS survivors.

While I was in the induced coma, at some unknown point I did not get enough oxygen. For a while, I was completely unresponsive, even to pain, and was not expected to survive. Obviously I did survive, but the hypoxia did a lot of damage. This is what originally qualified me for the Medicaid TBI Waiver. (Even though I had a hypoxic brain injury, not from trauma.)

So I have Medicaid, and Medicare, and Social Security, and food stamps, blah blah blah. I also have HUD, which means I pay roughly 30 percent of my income for rent and the rest is subsidized. That is IF you can find a landlord willing to accept it, and IF you can find an apartment in the designated areas with rent below "fair market" value. Basically, a crappy apartment in a crappy neighborhood.

My apartment is totally not accessible. But that is for another day.

So, back to Waiver. NY pays for an aide to help me. Waiver rules say he or she is allowed to drive me places. Waiver States that disabled people should be able to go places besides doctors offices. They give examples of visiting friends, going to the movies, going shopping, etc. Basically, having a social life of some kind.

But none of the home health agencies that provide services to Waiver participants allow their employees to drive clients in their own cars. If I had a car, they could drive it. But then, if I had a car, I probably wouldn't be disabled and even need someone to drive in the first place.

Health aides are allowed to do errands for me. But I can't go.

There is what is called Waiver Transportation. I have to call somebody official three business days ahead of time to request a taxi. Medicaid does pay for it and my aide can go with me. But it is impossible for me to know ahead of time how I am going to feel. Seizure day? Bad pain day? Nope can't go out. And they don't like scheduling and canceling at the last minute. So, I don't go.

This is different from medical transportation.  That is also a taxi, and 3 days ahead, but funded differently, and scheduled from a different place.

You also can go only one place with Waiver transportation. You can't run errands. Can't go to Rite Aid to pick up meds, then the bank, then Walmart, for example. I never know when a good day will happen, so I need to take advantage when it does.

So, I sit at home. I read ebooks. I read about other people's lives on Facebook. Sometimes I watch TV, but after an hour or so I can't stand it anymore. I used to knit.

Before I got sick, I knitted and even designed my own patterns. My brain can't do that anymore, but I could still knit simple things. Until I got DeQuervains tendonitis and had to quit. I want to start again, but could only do 5 or 10 minutes to prevent re-injuring my hand.

This is my life. It sucks. I am bored, frustrated beyond belief. Can't do anything without help, can't get the help I really need. I know people don't purposely post things to be hurtful, but when they post pictures of all the places they travel, all the restaurants they visit, it just hurts. It's hard not to take it personally when relatives especially brag about their wonderful lives and adventures. This week I get to go to a dialysis class (because my kidneys are failing.) Woo hoo great fun.

Waiver is supposed to keep me from being institutionalized, but how is this any better? Before coma, I worked at an ICF level group home. Those residents got new clothes every year, a vacation every year, and got to do tons of recreational activities.

I had a big seizure today, then slept for 8 hours. I am still tired. I can't figure out how to proof read this before posting it, so here it is.


  1. What is the reason you don't go to a home of some sort? Maybe you would enjoy kore of a life - I mean for you. I'm sorry You have to go through this and am humbled by your generosity and love you still show.

  2. Because people don't belong in "homes." They belong in their own home. People have the right to choose where to live, and be a part of their community. People who are institutionalized give up those rights. The Olmstead Act States that people have the right, and should live in the "least restrictive setting." That means, if a person can live in an apartment with help, they should. I have the right to chose what to wear, what to eat, where to shop, when to do things. Etc. People with disabilities are finally getting more say in their lives. Going into "a home of some sort" would be a huge step backwards. For me and other people as well.