With the exception of choosing my Medicare Part D (drug) plan, all other decisions are on hold until Tuesday. Medicare's open enrollment ends tomorrow so I finally made that decision.
It's frightening having to rely on Medicare for medications and medical needs. The coverage is both expensive and bare bones. Medicare pays up to 80% for most things and less than that for others. So, if I need an MRI, or other tests I'll have a big out of pocket expense.
I need to make other decisions concerning the house and other things but at the urging of my sister am shelving those until after my colonoscopy Tuesday. I've been having some alarming GI symptoms that began over a year ago but have gotten worse over the past several weeks. It's unrelated to stress. I've had a change in bowel habits, pencil thin stools, along with random bleeding.
Upon moving I started seeing a different GI doctor. He has been excellent. He is not only kind but is able to explain things that even a cognitively challenged person like me can understand. As an added bonus he also knows about dysautonomia including POTS so I haven't had to convince him of what I need in terms of prep for the colonoscopy.
The reason I've delayed getting a colonoscopy is the prep along with the fasting can cause my blood sugar to go really low. Also, with the POTS I'm easily dehydrated. Both can contribute to a fainting episode. When I had my endoscopy I was so dehydrated the nurse couldn't find a vein to use. I had to talk her into giving me an IV. She kindly did so but was later reprimanded by the doctor. I was thankful she did because I was feeling faint even lying down.
I'm still nervous about the prep and fainting but I need to get this done. My new gastroenterologist told me upon my arrival they would start an IV containing glucose. I'm grateful to him that I don't have to go through a long explanation that gets met with raised eyebrows as if I were exaggerating or being a hypochondriac.
The GI doc believes my mom likely died of colon cancer. It's not the first time I've heard this. Apparently it's common for colon cancer metastasize to the liver. Her oncologist at the time said my mom had a very aggressive form of cancer.
Also, I did not know that colon cancer, ovarian cancer, breast and prostate cancer all share the same gene which means my sisters' and I are all at high risk of developing any of the above with the exception of prostate cancer. Anyone with a family history of colon cancer should get a colonoscopy 10 years prior to the recommended age of 50.
Once I get the results back I can continue with making decisions and transitioning to living in poverty. I can't wait. That is a really hard pill to swallow. No matter how much I try to figure out what to sacrifice I still do not have the money to pay for rent whether its a share or on my own. Then there is the added burden of people who do not want to share a place with someone is disabled. I don't blame them. I don't want to live with someone who is home all the time either.
In order to be able to afford to live anywhere I'll have to use about $400 per month in savings. That will last less than 1 year. I have to buy a bed, pay first and last month's rent plus a pet deposit, buy sheets, lamps, etc...and I'll have to pay moving expenses.
And then the medical expenses. If I see a doctor who charges $300 per visit, I have to pay $60. It all seems insurmountable. I have a car that needs repair. I'm already dipping into my savings to pay for the crown. I used up the flexplan and still owe the dentist $448. And, I need to get glasses.
I won't have dental care or vision coverage because I can not afford to pay the high cost of a Medicare Advantage plan.
The hardest part of my day is waking up to this reality. It's like I have to get used to it over and over again. I spend a few hours each day looking at my expenses as if some new figure will suddenly pop up. Or trying to decide what else I can sacrifice. I will already be going without a landline and cable but I do need the internet. I can't go without food. And the rest of my check is taken up with a student loan and Medicare costs.
I might qualify for food stamps which would help. I'm going to apply for any aid I potentially qualify for.
And I'm grieving.
But there are moments like last week when I was able to drive 4 miles to and from the lab to get my blood drawn and then again to the dentist. I had a great time. Or when my nephew asked if I wanted to watch a Harry Potter movie with him. Or seeing his face light up upon opening his birthday gift. Or hearing my niece play the piano. She's a natural. I am so grateful for these sorts of moments and experiences. That is the one positive outcome of this disease is the ability to find joy in small things as well as the ability to feel grateful for those things.
One of the most striking things about the ME community is the ability to make sacred the small things in life. I think of all the books published by ME patients. And all the artwork. It's inspiring.
So I'm holding onto experiences as mentioned above. They get me through to the next moment or hour or day.