For the past few weeks, I have been telling myself that it is time to put up a new blog post. Telling myself that I owed it to the readers of my blog to post much more consistently than I have in the last few months. And there are plenty of reasons that I can come up with for my lack of attention to my blog. I had a whole lot of surgery for a few months there. There were some caregiver issues to deal with and when they are in short supply, the search for more always takes most of my attention.
The truth is, I haven’t felt like writing much. I have been in a really weird place lately. Discouragement has been heavy. I am so tired of living on government benefits and all the rules that come with them. I’m willing to bet that there are tons of people with disabilities in a similar situation that feel the same way I do. Don’t get me wrong. Medicare and Medicaid and other programs I qualify for based on my eligibility for them have saved my life a number of times. I have a myriad of medical problems and I probably would not qualify for any other insurance, at least not without a premium that I could not afford. So I am grateful that the programs exist and that I am eligible for them. Collectively they enable me to get what I need.
Recently I had to switch to another payroll company to get my caregivers paid. I was told that if I wanted to stay on this program under Medicaid, then the switch was not optional. The paperwork was more than challenging and we had to get it done over Christmas break when most of my college student caregivers weren’t in town. Even with this new company, background checks will still take at least four weeks before a new caregiver can start working. And that is only if I can find people I want to hire. Of the seven interviews that I set up last week, three people showed up. The two that I offered the job to never got back to me. I am back at square one.
So these days I am tired. The whole thing gets old and makes me weary. My living on Social Security Disability and being covered by Medicaid was only supposed to be temporary. I signed up for the programs in college because it was not possible for me to get a part-time job at McDonald’s. I am not ashamed of having to utilize government programs in order for my life to work. Nobody should be. The programs are there for the people that need them. Speaking only for myself, I wanted more. When I graduated, the plan was that I have a great career and be able to support myself.
It was not meant to be.
Life and some medical issues got in the way, and here I sit living on the same programs thirty years later.
The thing is, I don’t want this to be all there is for the next thirty years. My hope is that I can make enough money to support myself and pay my caregivers out of pocket. If I could do that, then I can decide if I want a background check conducted when I hire someone. And if I could pay my caregivers more money, then it seems to me they would probably be more likely to stick with me over time.
January is the time when most people make resolutions by asking the question “What do I want to be different in my life?
My answer is that I want to make my own way. To be able to get all my needs met without relying on government programs with all of their stigmas in order to do it.
Will that be possible for me? I am choosing to believe it is.
Someone once told me that when there is a big enough “why” there is always a “how.”
I have explained in the past that I have a really hard time when people take my power away from me and decide what they think is best for me without my input. It makes me crazy. And after so many years of living by the rules of these programs I was starting to doubt that I deserved more, or that things in my life could ever be any different.
Most people know that I recently wrote a book. And at this moment, I know almost nothing about marketing. But I am committed to learning what I need to do to get my book out in front of masses of people. And I am asking for people to hold me accountable. If I am ever going to live without the support of these government programs I am going to need a whole lot of money to cover my expenses and make sure I get everything that I need.
I am going to sell a whole lot of books in 2019.
When there is a big enough “why” there is always a “how.”