Tuesday, December 6, 2011

On Hold and Holding On

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.

7 comments:

  1. Terri, I cannot believe all that you are going through. It is more than one person should have to cope with. You are in my thoughts and prayers.

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  2. Hi there,
    I recently moved home to Australia from the US and but for the fact that I had somewhere to go I would be in the same boat as you. As it is I have many economic challenges here but at least my medical care is free and my medications are sponsored. I really feel for you in this situation and I wish I had something positive to suggest.. All I can do is tell you I am thinking of you and hoping some little ray of hope comes to you. Good luck!

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  3. Dont know what to say except that I hear you and hold you in my thoughts (*)

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  4. Hi Terri,

    Thanks for catching us up on how things are going. We all care for you so much. I hope the tests go well. You're right to not be doing anything but concentrating on the medical stuff right now. I'll be thinking of you.

    Love,
    Toni

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  5. Hi Terri,

    One of my old posts (one on dysautonomia) has been getting newer visitors and I came across your name in the blog comments. So, I wanted to stop over and say hello. :)

    I'm sorry you are dealing with so much right now and I know it's scary.

    I think your sister is on the right track with encouraging you to focus on the colonoscopy for now. I've had 4 colonoscopies (and had a foot of my colon removed in 1996).

    Also, I've had to do bowel preps for other things (mostly surgeries). So, I know preps can be challenging. I've written about this on my blog since my bowel prep experiences have varied wildly over the years as the type of preps has improved.

    That is awesome that your GI is kind and knowledgeable about POTS.

    I hope your prep goes well. I understand your apprehension. Hopefully, things will go well. I'm glad you like your gastroenterologist too. Another plus.

    I'm sorry that you lost your mom. It must be frightening that she is suspected to have had colon cancer.

    My husband has colon, ovarian, and prostate cancer in his family.

    Due to the number of relatives who were diagnosed with various cancers within a short time of one another, several members of his extended family (his father, aunt, uncle, etc.) have had genetic testing done (BRCA1 and BRCA2 genes).

    My father-in-law has pressured my husband to have such testing. However, my husband hasn't done so because:

    (1) He was afraid that a positive test result might give insurance companies an excuse to discriminate against him.

    (2) My husband is aware that he may be at greater risk without the test. So, he sees no point in risking discrimination (i.e. pre-existing condition).

    (3) A positive test result would just confirm that he has reason to be concerned - which could cause him emotional stress. He can make lifestyle changes under the assumption that he is positive for the genetic issue without a test.

    --

    So, he hasn't had a test. While the types of cancer you mentioned can (in some cases) all be traced back to a BRCA gene issue, there are other causes for those cancers too. (So, it's possible for someone to have relatives with the cancers you mentioned and not have BRCA gene issues behind it).

    Due to the BRCA testing that my FIL and my husband's aunt and uncle had done (i.e. my FIL's siblings), we know they all tested positive for BRCA gene issues.

    My husband is having a colonoscopy 12/15. He's 46 but with his symptoms and the fact that his grandfather died from colon cancer (plus his grandfather had prostate cancer too), they are going to check him out.

    I hope everything goes smoothly with your housing situation. I know dental and vision expenses on top of medical are overwhelming. Hang in there. I think you're smart to apply for any aid you potentially qualify for.

    You have a great deal on your plate. I am sure it must be overwhelming and even scary. Hang in there.

    I'm glad the Harry Potter movie with your nephew and hearing your niece play the piano lifted you up. I know Harry Potter and piano are infamous in my house for giving people a lift. :)

    The small moments really do matter. Those special moments really do help brighten the day and make it easier to cope with losses, pain, grief, and frustration.

    I'm sending positive energy your way!

    Take care,

    Jeanne

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  6. Terri,
    I'm sorry all this is piling up on you right now. Please try to find an advocate who can "do" lots of the hard work for you. If you are on disablilty then there are "senior and disability workers" who will assist you with all kinds of things. If not, INS may have someone who could help. Don't hesitate to ask around:) We all need help now and again.

    Again, I'm so sorry for all your troubles!

    Lifting you up in prayers and sending you blessings.

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  7. Re: student loans. If you are retired on Social Security (or even before) you can ask to have your student loans cancelled That's what I had to do. They send you a form - and your doctor has to certify that you are disabled. I really hope you see this comment and that you can do this! We are in the same boat - keep rowing..... Kendra

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