I talked to my shrink about Michigan Rehabilitation Services. I told him that I suspected he was confusing it with something else because they seemed to be focused on getting handicapped people into the workforce. He assured me he wasn’t and that they define “handicapped” very loosely and that my long-tern depression could make me an excellent candidate for them and that they would love to place someone with as many skills as I have. Cool. I said they might want documentation of my depression and he said no problem. Woo hoo! My sucky moods could be a boon.
I also decided to use Duolingo to get a little Greek back into me. I spent three years in a Greek Orthodox church learning Greek from an actual Greek lady, Zana. She’s a hoot. Once, at the bookstore, we were all sitting around the table and people were asking where each other were from. One girl was from Traverse City, which is up by the tip of the pinky finger, where she pointed to on the top of her left hand. Everyone was pointing to the anatomical area they were from. Zana was highly confused, started pointing to her left hand wildly and saying, “Why everyone keep doing this?” Someone went to the atlas section, came back, and opened it up to Michigan. I pointed to the Flint area and added, “Yes, we really do call this the ‘thumb’.” Zana Litos is also a PhD and teaches at LCC. She was always frustrated with her American students who don’t know basic world history, like where Mesopotamia is. In Greek, “meso” means between and “potamia” means rivers; hence, “Mesopotamia” is between the rivers. What rivers? The Tigris and Euphrates, of course. I always knew it was in the Middle East around Iraq, but had never thought of it from the Greek perspective. To her, it was obvious. She thinks American students are slow. And, for the most part, she is right.
I am looking forward to knowing if MRS can do anything for me. And I have figured out how to change my keyboard to Greek at will. Οπα!
A couple days ago, a hospice worker came in. Barry doesn’t qualify yet, but I feel so much better. I walked around the mall wondering why I would feel so much better without Barry qualifying.
I think it’s because I know what the next step is. And the next. I feel like I am not so alone.
The weather also may play a factor. A couple weekends ago, it actually snowed. Lake effect, of course. Yesterday, it was in the low 80s. The first blush of dandelions was everywhere. And the grass is suddenly green. We still have standing water everywhere, but it has been breezy, which helps dry things out.
I may be feeling hope now. I see the next phase. My shrink recommended Michigan Rehabilitation Services because they help people get back into the workforce. I have an orientation next month. Because I now have some help with Barry, I can get a job. I won’t be sitting around the apartment waiting for one of us to die. I hate feeling like a vulture. He is not going to like any of the upcoming appointments, but there’s not much I can do about that.
Another reason for the feeling of new beginnings is yesterday was Holy Saturday, when I was chrismated 14 years ago. Today is Pascha (Eastern Orthodox Easter). I don’t care about any of it anymore. I thought I would miss it more than I really do. I am celebrating my independence from everyone’s opinions. It feels like freedom.
I’ve had a cold for the past week. I am starting to feel a little better.
What happened was that one of Barry’s AA friends said she would take him to his Sunday meeting for the next couple months until they moved up north. Then she reneged. I had gotten my hopes up, told my friends I was getting more help with Barry, and looked forward to having the apartment to myself (however briefly). Then she wrote a letter, saying it was God’s sense of humor. People wonder why I’m not a Christian anymore. She doesn’t want to know what I think of her god.
Anyhow, my body can’t tolerate the up-and-down cycles of disappointment/hope.
On the upside, my shrink is looking for the name of some agency that helps place people like myself in jobs. That would be super cool. I just don’t want to get my hopes up again.
I’m getting Barry used to other people taking care of him. It’s all coming out of pocket for the first twenty days of service. The insurance company does everything within its power to make using their policy just not worth your time. It’s like having a $2000 deductible.
Once I get into the new swing of things, I will know what my availability for work will be. I’m sure someone will want my skills.
For now, I’m drinking lots of fluids and taking plenty of vitamin C.
I am excited. Monday is the first day of the home care worker coming in and watching Barry.
I finally have a “next.” I feel a need to update my resume and try soon to get a weenie job. Is this what hope feels like?
My urgency comes from becoming fifty this year and having wasted so many years concerned with fulfilling societal expectations. I need to be intentional regarding everything and not allowing myself to “go with the flow” (which always goes downhill). My life is more than half over and I have never had a career. I have been too busy wasting my life and trying to be a good girl.
I am learning to manifest what I want and need. Persistence is the name of the game. I wish I could “trust the universe” to give me what I need, but I have wasted far too much time trusting others to meet my needs. Somehow, being female, I end up being expected to meet everyone else’s needs while mine go unmet. For example, I believe that workplace equality will always be a joke as long as women are simply expected as a matter of course to be the family caretakers. That’s just the way it is and, as long as women continue to play that role willingly, that is the way it always will be.
I have certain goals. One plan is to get more current on human resource laws. I have renewed my SHRM membership. Another is to rest up and get clearer regarding what I want. My life has not been about me in years and I am exhausted. I can’t sit around watching mind-numbing TV and figure out where I am going, all at the same time. I have been deliberately not sitting with Barry while he watches endless TV. He and I are on separate journeys. I am not planning on going to the grave with him. Many caretakers do not outlive their patients, but it is now looking like I just might. This is new.
I kept calling the insurance company. Last Thursday, I called and actually talked to the Care Manager. I asked about the status of the claim. She told me that Dr. Thompson’s office still had not returned the information. I informed her that that was false. I knew for a fact that they had and had even attempted to get verification of what had been faxed to the insurance company and were told that receipt of the fax could not be guaranteed for 24-72 hours. Do not lie to me! Again! OMG. I told her to look again. She said that it did look like they had returned the information (Gee. Ya think?) and she was unsure of why eligibility had not been determined. I said that she didn’t seem to have much relevant information for me. I exasperated her to the point where she gave me the phone number to the claim department. Now we are getting somewhere. I called them and left a message.
I called the claim department yesterday and was told that Barry was determined to be eligible and that we should have gotten a call from the Care Manager informing us of that. I said that we had not received any such call and that I had been calling and inquiring for weeks. The claims person said that there was no such record of me calling repeatedly. I informed her that their records were inadequate. She said that a letter was sent out on Thursday the 23rd.
Today I got the call from the Care Manager saying Barry had been approved and got some instruction on what I will need to do to get the ball rolling. Yea.
I feel like I am at the Oscars, receiving a trophy, and realizing that I have received zero support and assistance. I would like to thank me, myself, and I. I did this. Alone. Unless you count the spiritual assistance I (literally) conjured up to bind the insurance company. I have thanked them. I believe in giving credit where credit is due and in not giving credit where it is not due. I believe it was my calling repeatedly and asking for information from the insurance company and the lawyer calling them and me going to the doctors’ office and calling them repeatedly that have achieved this. They did not do this out of the goodness of their cold, little, shriveled hearts.
The idea that the rest of my life is going to be like this is exhausting. Everyone has always given me the impression that life has its own momentum. I have absolutely never found that to be the case. Bad stuff happens spontaneously. Good stuff requires a ridiculous amount of discipline and perseverance to achieve. Nothing good occurs without me making some huge sacrifice of time, energy, and/or money. The cost is often so high that I seriously question whether the sacrifices are worth it. I have had many Pyrrhic victories. Good things happen because I take full 100% responsibility and make them happen. The only exception to this I can think of is when my parents gave me their car. I will be eternally grateful for that.
Anyhow, before I receive any assistance form the insurance company, I have to use 20 days of services before they pay for the 21st and onward. Because I saw a potential legal hassle in front of me, I have been putting off paying for assistance and getting a new routine going. So I have an appointment for an in-home visit scheduled to have the potential provider do an evaluation. One thing at a time.
Barry is not going to like the next phase of things. But it’s not as if I thought he would. Part of me is still disbelieving my own self. After all, I still have yet to receive the letter of eligibility. But he is about to start getting baby-sat. Once I get a schedule going, I can maybe get a weenie part-time job and start looking at beginning (not “re-starting”) a career.
Everything will still revolve around Barry, but not as much as for the past five years. This is the bare-bones beginning of me being able to work. To me, holding down a job is a major commitment and I won’t make a commitment I can’t keep, if I can at all help it. I want to be a real employee, even if not much of one.
On to the next phase.
I have been having moving spiritual warmth for the past six months or so. The natural assumption is that they are hot flashes due to menopause. What made me never believe that hypothesis was the mobile aspect of them. They seemed to prefer the left side of my body and they regularly violated ordinary expectations, doing things like making my feet hot in the dead of winter or going down the leg sticking out from under the covers.
This past week, I developed some level of conscious control over it. I was amazed. I was able to move the heat up my legs into my torso and into my arms. This is new. I think it might be kundalini because it gets more intense the more I meditate.
I am working on developing spiritual power and this is a great encouragement. I never got any real-life encouragement as a christian. This stuff actually works.
Talking to a friend (my one that left MI and moved to MD), I knew what I needed to do: get still regarding an issue and just listen, for as long as it takes, until some new insight or information arises to tip the balance one way or the other.
I believe that was Thursday. Friday, I got the results of Barry’s blood tests. The tests were ordered because of the whole process of elimination of possibilities for explaining Barry’s cognitive impairment (as if the Huntington’s was insufficient). At least, that is my understanding. I think four tests were ordered and I got the results of two: the B12 level and the folate level. The B12 was in the mid-500s, smack-dab in the middle of the 200-900 range. The folate level came back as >24. The normal range is 2 to 7.
My problem with “>24” is that it is not an actual measurement or quantity. “Greater than 24” can mean 24.1 or 68.9, or 156.2. It literally has no meaning whatsoever. What it says is, “Our chart only goes up to 24 because so few people have levels that high. This level is literally ‘off the chart.'”
So what does it mean? As far as I can tell, it is likely an indicator of advancing prostate cancer. It would make sense given the blood-in-the-urine incident from two years ago. I could be wrong. If Barry’s B12 was low, it would be a sign of pernicious anemia. So that is not it.
I wanted some new information. I believe I have it now. I emailed the physician’s assistant asking if the test should be redone. It would be nice to have an actual diagnosis, for purposes of me receiving help, but Barry has steadfastly refused to have a biopsy done. Given how painful I have heard they are, I can’t say I blame him.
I now suspect the reason the insurance company is dragging its feet is because they are waiting for Barry to die. I think someone looked at the “aspiration” diagnosis and realized that we are now talking about mid- to late-stage Huntington’s.
I believe things are speeding up and I will need to land on my feet when he passes. The time for diddling around is over.