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.
I hang out with a New-Agey group. They are wonderful. They are everything that many church people claim to be but often aren’t.
I read a lot of books on spirituality and Buddhism, in particular. If forced to choose a religion, I would choose Buddhism.
However, Buddhism sometimes seems as fantasy-based as the Veggie-Tales theology I ran into as a Protestant. The kind of theology that says that evil is simply the absence of good. And some of my New-Agey friends are into “non-duality,” which says that everything is actually one. Non-duality sounds fabulous. My problem with it is that it denies the realities of evil and separation.
The famous people that practice non-duality seem to live in caves and can devote themselves full-time to developing their spirituality. Must be nice. I often wonder what they would done in my position. They have someone picking up their slack in real life, whereas I am the one picking up the slack for Barry.
I have been reading a lot about kundalini energy lately. I believe that it is part of what I am experiencing physically and spiritually lately. The more I read about it, the more I realize how my life is not conducive to fully processing this energy. There are all sorts of physical effects that go with the physical transformation of this energy that would make me completely non-functional. I do not have the option of taking time off from caring for Barry so I can turn into a puddle of spiritual energy or deal with horrific physical symptoms that would render me useless. I’m really hoping to deal with this energy gradually, in a way where I can function like a normal human. I believe this is why the most spiritually advanced people are often men–they have someone taking care of the real world while they go on retreats or become temporary hermits.
Sometimes, I fantasize about what I will do when Barry is gone. I can devote more of my time to spiritual pursuits. Or maybe I will be too busy trying to pay Sallie Mae back.
It’s easy to believe in non-duality—until you find out that you’ve been lied to by the insurance company or had someone almost hit you when they pull in front of you in traffic. Sometimes others do not care about you, at best, or are actively trying to make sure your needs are not met. I will believe in non-duality when your eating lunch fills my stomach with food. Separation is real. This is where concepts like “justice” come into play. It’s funny how the people espousing non-duality are usually at the top of the food chain, asserting their authority in comfort.
I am done being a good, little victim. I will use whatever powers I deem necessary to get my needs met. I am not into trying to create adversarial relationships, but I am also not into pretending that I am not in one even as I am lied to. I’m interested in what works, not what sounds good. It’s part of why I stopped being a Christian. I am empowered, not meek and mild.
Yesterday I went to Barry’s doctor’s office to apologize and thank them for their efforts and efficiency. I explained to them how the insurance company claimed that they (the doctor’s office) were the roadblock to getting benefits by delaying returning the forms to the insurance company. I explained how this triggered rage in me because it was like Barry’s family, who would say, “If you need anything, just call,” and then,when I would actually need something, say, “Well….Now’s not a good time.” When is it a good time to be in crisis and need help with a disabled husband? It’s an asinine statement. When Barry dies, maybe it won’t be a good time to invite them to the funeral. Sheesh.
Anyhoo…The most helpful person (I think of her as the “cat smock lady”) tells the secretary to find the file online with the fax cover sheets of received faxes. She does so and prints out a copy for me. In the place of “Fax Transmittal Date” is 2/10/17, but anyone can type anything there. At the very top of the sheet, not quite covered with Barry’s name, you can clearly see where the fax machine printed the actual date of transmission, 2/22/27! In other words, the person transmitting the fax pre-dated it by almost two weeks! I am ecstatic. It is not my opinion or assumption they are lying to me. It is a fact I can prove.
It’s not very often that you have tangible proof of someone lying to you. I’m not sure there can be a better definition of “bad faith” than that. If they choose not to give me benefits, I am going to get a big-ass settlement. Mine is a career-making case for some lucky attorney. The questions I am pondering now are “Even if they offer me benefits, should I still take their butts to court for all of the people they lie to and don’t provide paid-for benefits to? Do I just get my own needs met (sure would be nice for once) or do I go after justice?” I’m not sure, but I feel in charge for once.
I went into the doctor’s office with Barry angry because the insurance company told me that the doctor’s office hadn’t returned the forms sent in that the insurers had sent them. I was pissed at the wrong people.
The physician’s assistant gave me a timeline of when they had received the forms and the progress filling them out. I shouldn’t be surprised. She told me that they lie to her all the time, saying they sent forms when they haven’t.
So there was that appointment, which drove Barry crazy, where the physician’s assistant did a mini neuro-psych eval on Barry. Later, we went to the lawyer’s office to redo the POA. Barry’s mood was bad and he was begging to leave like he did at the doctor appointment.
By the time we got home, I was anxious to be anywhere that Barry wasn’t. So I went to Panera and had soup and a salad. I feel bad for Barry, but yesterday was super-happy-fun-time compared to the upcoming attractions of Huntington’s. I am seriously hoping that the new increased stress level kills him before he has to go into a nursing home. If he thought the little doctor’s appointment was bad, he is going to really have a horrible time when I take him to the full-blown neuro-psych eval that still has to be done.
Things are not going to get better. Part of the problem is that I have spent the past eight or nine years doing everything in my power to make him comfortable. It has worked for the most part, but it cannot continue for two reasons: 1. The Huntington’s is too far advanced for me to really make him comfortable anymore and 2. I have to start my life up again. I have put everything on hold for him indefinitely and I am reclaiming my life.
But I don’t want to take out my feelings on the wrong people. The problem is that I have zero emotional reserves and so sometimes it is impossible for me not to over-react to problems. Last week, I actually wondered, if I slit my wrists, how long it would take to bleed out and if I could do it without screaming so I wouldn’t wake Barry up. I went over the edge a long time ago and sometimes I hear myself splat on the ground. It is not pretty.
Since I helped Barry reunite with his grandsons, I can spend more time and energy dealing with insurance-related stupidity.
It turns out that Barry’s primary care doctor’s office is the hold-up. I am stunned. They were pretending to be oh-so-helpful, acting like they were on my side. I had to hound them to find out that the reason they had not submitted the forms to the insurer was that Barry needed another appointment. They couldn’t tell me that three weeks ago? I had to hound them to even find that much out. They keep throwing obstacles in my path. As soon as they submit the forms (and I will hound them every day until they do as soon as the appointment is over), I am looking for another doctor for Barry. Period. If they fart around again, they will receive a letter from my lawyer. I am done with them.
Their actions are so hurtful. To me, to pretend to throw a drowning man a lifeline is horrific. It’s neither appropriate nor forgivable. It’s like Barry’s family all over again. “If you need anything, just call.” Pretending to be helpful is a hundred times worse than just saying, “I don’t have time to help you.” I thought I had someone caring actually coming alongside of me and helping to carry the burden. Wrong. They are adding to the burden.
This is all part of my effort to get my needs met. Frankly, that is all that matters now. I am deliberately focusing on doing things that will make the next phase of my better or at least do-able. I was burned out two years ago. To go years without getting your needs met is scary. Part of me does not care about Barry anymore. If my needs don’t matter, guess what? Neither do yours. Empathy is not possible for someone running on empty for the past few years. It is going to take me years to recover from this time in my life. If I live that long.
I’ve only had two goals lately: get help from the insurance company and have Barry see his grandsons for the first time since Christmas of 2014. I’l probably be working on the first one for a while, but the second one is done.
Jeff (Austyn and Drew’s dad) brought the boys to Lansing last Thursday. We all went to De Luca’s, the best Italian place in town. Barry seemed a little out of it, but he enjoyed eating pizza.
It’s quite the drive from Algonac to Lansing. I had never heard of Algonac. It’s almost in Canada, a little north of Detroit and Lake St. Clair. He got on I-696 and then got stuck. Yeah, that sounds about right. So the boys arrived starved and we immediately got cheesy breadsticks.
Austyn (10) seems like a normal, happy kid, but Drew (8) seems insecure. Bailey really seems to have hurt him. And they’ve only been living with Jeff for a few months. It will take a while for the stability to kick in. Bailey is now not a factor. She really is in Nevada. Thank god.
We will probably see the boys again, but I am no longer in a hurry. This is a big relief.