Coping with chronic disease alone

Lets talk about home hemodialysis and how you are coping everyday
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Coping with chronic disease alone

Unread post by majestik » Sat Sep 15, 2018 9:44 pm

Chronic diseases are a burden on their own. I live with failed kidneys and their implications — worsening gastrointestinal diseases, chronic anemia, dialysis and it’s myriads of side effects, but on top of it all, I have to carry this burden, alone.

I wasn’t completely alone when it all started. I was in what I considered a committed relationship. For six great months after my unexpected diagnosis, our relationship was my anchor. And then I lost that. As I look back two years later, I see the inevitability of that ending, but for two years, I have had to bear the burdens alone.

My circumstances are in many ways unique. I do actually have family members, not nuclear any more, but I have siblings, a mother, cousins and others I have come to consider as family over the years. But they all seem to have found good excuses not to be there.

I was always the provider.  There has been some strain on that as I work to put a startup on the map, haven left my safe job just less than eighteen months before I diagnosis. But even then I still tried. For more than eight months post diagnosis, I spent time in and out of hospitals as a results of complications from dialysis, hospital administration issues and search for answer to what really happened to me.

I relocated back from the West coast to the DC region where I lived for more than fifteen years before moving just twenty months before my diagnosis. I moved here because I though I have a root here or at least nearby. Cousins, friends, sibling. I soon found out a few basic truth about life’s tragedy. We have to live through them alone.

My case is even more different. I opted for home hemodialysis and I have no partner. So I prime the machines for treatment, self-cannulate, preform the treatment and get myself off machine at the end of treatments. I have been doing this now for more than fifteen months. Sometimes, I feel so sick post dialysis; very low blood pressure, vomiting, even feverish. And here I am, alone.

Everyday I wake up, I wonder if it was a good thing I did or if I would be better off dead. Every time, I set out to start treatment, I have this background thought about dying during treatment. I do an average of five treatments per week, sometime as many as seven times a week. But through it all, I am alone. For many months post diagnosis, I had something to live for. Initially it was mostly my girlfriend, but also it was my faith in my ability to create solutions that millions will come to depend on. Then I lost my girlfriend, and went into a period of tailspin. As I began to alight from that moment of depression, I was able to put a team together to work on one of the project apps for my startup. Soon, I realized I was being fleeced. And now I am stuck with an incomplete app, the bills and a growing debt. I feel even more alone, but no one to share with. The facts are mucky and complex. Even church did not keep its promise.

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