I wrote this blog post quite early this morning and didn’t post it. I wasn’t sure about it. Since then, I’ve reread it twice and have had second thoughts about posting it. I usually post an End of Year post on the last day of the year, but this one is too depressing, too negative. I don’t think I want to be a downer for my readers. Nonetheless, I’ve decided to post it after all, although I’m not sure it’s a great idea. It does, however, describe my year, which is my intent. If you’re not interested in reading a depressing or negative post, feel free to skip this one. No hard feelings. If you’re interested at all, feel free to read it though. Hopefully 2016 will be better for me/us and hopefully all of you will have a good 2016. Happy New Year!
On the last day of each year, I write a year in review post. Here are the links to the 2014 Year in Review blog post and the 2012 End of the Year blog post. I had a lot going on in both years. If you read them, you’ll note I had some health problems, particularly last year. Well, I’m about to write an abbreviated post for 2015. It’s abbreviated because this year was largely a personal disaster due to hideous, nightmarish health and pain problems and I/we didn’t really get to do very much at all.
In January, my mother celebrated her 85th birthday. Although she’s had a couple of bad falls this year with broken bones, she still is relatively good health and living alone in a condo in Knoxville, TN.
In February, I developed severe back pain to accompany my head and facial pain, out of the blue. It took time, but over the course of the year, I sought treatment from my orthopedist and a rheumatologist, as well as physical therapists. It seems I have spinal stenosis, degenerative disk disease, massive osteo-arthritis throughout my entire body, and a broken tailbone. They’re recommending surgery to remove my tailbone, probable spinal fusion surgery, and down the road, two hip replacement surgeries. My pain has been at about a 9.6 out of 10 level every day this year and virtually no pain medication helps.
About the same time, my head pain increased and got worse. My Trigeminal Neuralgia was joined by at least one, perhaps two, other types of head pain, which I have been trying to have diagnosed and treated all year, with little help. My two types of head and facial pain have been at a 9.6 out of 10 level every day, virtually all day all year long with virtually no relief from any pain medication. Any pain medication that used to be helpful is no longer useful. I now have three new diagnoses for additional types of head pain disorders, all three of which can be extremely painful, one of which is supposed to be the most painful condition known to mankind. I don’t know. My wife and I are convinced there’s another undiagnosed condition that has yet to be treated, since I’m responding to no treatment.
Since this spring, my longtime insomnia has worsened. I am averaging about three hours of sleep a night and am now, in fact, waking up and getting up between 11 PM and 12:30 AM. It sounds insane, but it’s true. That means I go to bed early, but I still get only two to three hours of sleep. I also can no longer successfully nap. I started falling asleep at red lights while out driving, and in chairs sitting up, and at doctor’s offices, and at church dinners, and my wife and I suspect I may have narcolepsy so I have an appointment with my sleep doctor in a few weeks to discuss this.
During the spring, somehow I was able to get to some of the concerts I was able to buy tickets for 2014 Christmas for my wife. Because of my health problems, we unfortunately had to blow some off and waste that money, but we did get to see Lewis Black, Weird Al Yankovic, The Who (which was awesome), and Barry Manilow, which was pretty much the highlight of my wife’s life. We blew tickets to Chicago and a Pittsburgh Penguins game. Oh well. We had good times.
In April, we celebrated our second wedding anniversary. It was pretty low key. It feels like we’ve been together for so much longer than that. We have a wonderful relationship and I’m very lucky to have Gretchen for a wife and best friend. April is also Gretchen’s birthday and so that was pleasant, although she’s not thrilled about getting older. I keep telling her she looks and acts infinitely younger than she is, looks at least 10 years younger than other women her age. I think she knows that intellectually, but still is annoyed with aging. I think she’s still sexy as hell. She always will be.
In July, I started going to a new neurologist who I didn’t like personally very much, but who, to his credit, did try some new things. He’s an egomaniac, but then many doctors are, I suppose. He’s given me a couple of Botox injection treatments so far and has tried a number of new medications on me, none of which have helped, but at least he’s trying.
Also, in July my head pain got even worse, if possible. Since I’m up 21 hours a day on average, it became 21 hours of pain a day, every day, without break. At a near 10 out of 10 scale, which combined with my back pain made life nearly unendurable. I applied to get into Vanderbilt’s Neurology Headache Clinic, which has a good reputation, thinking that after nearly six years of treatment in Chattanooga and only getting worse, I need to go elsewhere if I’m going to get better. July was also the second anniversary of my father’s death. It was a sad occasion.
I had my birthday in September. I suppose it was low key, as I remember nothing about it. This fall has been largely a blur, due to my pain status. I’ve been super focused, while also at the same time, largely oblivious. If that makes any sense. I particularly enjoy September and October because of sports. You have college football, the NFL, baseball, hockey just starting, college basketball just around the corner. It’s pretty awesome. I enjoyed watching my Pirates make the playoffs for the third straight year, watching my Tennessee Vols have a frustrating but ultimately successful 8-4 bowl year and my UCLA team have a winning bowl year, my Steelers have a injury-plagued year in which they still have a minor chance of making the playoffs and the hockey season, in which we paid for a year of NHL Gamecenter Live, in which you can watch any game you want – not on national TV – live for a one time set price. So I get to watch my Penguins quite often. If only they were playing up to their expectations and potential. It’s been disappointing so far. Of course, the UT Lady Vols are doing well so far, but they’ve had so many injuries, they’ve only been able to dress seven players lately, so it’s only a matter of time until they start losing many games and the men’s Vols basketball team has a great new coach, but not much talent while my Long Beach State team is having a rough year getting beat up by major teams like Duke.
In October, I finally got to go to Vandy. I was instructed to bring my medical records, so I spent two weeks and hundreds of my own dollars getting them, Gretchen took a vacation day, we drove six hours two ways, went to Nashville and met with a doctor who didn’t even want to look at my records, said they weren’t important, didn’t want to discuss my background with me, spent perhaps 15-20 minutes with me, prescribed a useless migraine medication for me, said I needed Botox immediately (so they scheduled me for three and a half months away) and, when Gretchen asked if we couldn’t just get this done in Chattanooga, reacted angrily and said it had to be done there. We left pretty ticked off at what waste of time and effort that was. I haven’t canceled my next appointment there yet, but I will. There’s no point in going. Meanwhile, my mom has stepped up to the plate and said she’ll pay for me to go anywhere to help get me fixed, cured, whatever. So, I’ve been researching Mayo, Johns Hopkins, the Cleveland Clinic, UCLA, etc. So far, Johns Hopkins would be convenient because that’s where Gretchen’s family lives, but Mayo seems most impressive by far. I’m not going to pursue it just yet though. Want to exhaust things here in town first.
In November, we traveled to Maryland to visit Gretchen’s parents, sons, and friends. It was a difficult trip for me health wise, but she had been wanting to go for months and we hadn’t been up there for a year and a half, so it was time. And we had a good time over Thanksgiving. It was good to see everyone. We also celebrated our one year anniversary of getting our kitten, Ace, who has become Gretchen’s baby. He’s now about 16 months old, and Henry just turned 10 years old, which is unreal because I can remember when he was just a month old, but they get along much better now and Ace is calming down a little bit finally. But just a little bit. Ace is also the most social, codependent cat I’ve ever seen in my whole life! He needs to be with people like nothing I’ve ever seen. He needs to be held. When we went to Maryland, we hired petsitters to come to the house twice a day to help mostly Ace. Henry is pretty independent and I’ve left him by himself for a good three days or so, but Ace couldn’t take even one day, I’m sure. It’s kind of sad. Cute, but sad. Nonetheless, we love them both and they add to our lives tremendously.
This month, we celebrated our five year anniversary of when we started dating. That’s always an exciting occasion for us and fun to remember. We also had a very subdued Christmas, which was somewhat anticlimactic. My pain was so severe and I was on so much pain medication, it was virtually impossible for me to function at all. My mother drove down from Knoxville to be with us on Christmas day and we exchanged a few gifts, nothing like last year. We couldn’t put up our tree this year like we’ve done in the past because of Ace. He goes wild. We put up a mini-tree we bought, with some lights and ornaments. That was destroyed the first night. We put up an old ceramic tree with plastic lights I’ve had for decades, but Gretchen thought better of it, so she got a little wooden tree with a string of lights and that was our tree. We didn’t even put presents out until the night before because Ace would destroy them. We try to control him, but we really can’t.
One year-long note. Early this year I was forced to drop my Obamacare and start using my Medicare I got last year when I went on disability. I had no idea how that would change my life. It’s been a nightmare. Medicare Part D is a freaking nightmare from hell! With Obamacare and BCBS, my monthly medical bills came to roughly $400 a month. With Medicare, I was quickly paying up to as much as $2,800 a month in medical bills, almost all of it prescriptions. One of my prescriptions alone had a co-pay of $800! That’s fucking insane! That total is more than double my disability check. How the hell am I supposed to pay for that? And I have no choice. As long as I’m on disability – and there’s no way I can work – I have to be on Medicare and as long as I’m on Medicare, I’m stuck paying thousands a month for medical/prescription bills. It’s unfair and cruel and I resent it like hell. It’s practically ruined my life even more. Thanks for the added stress, government. Thanks for practically bankrupting me. Appreciate it.
Well, I guess that’s about it for 2015. It was truly a horrible year. Probably worse than 2011, perhaps. I don’t know that 2016 will be any better, but I’m hoping it will be because we intend to aggressively pursue medical treatments for my back and head and solutions and ways to diminish and end my pain. I don’t know if that’s possible or reasonable, but dammit, we’ve got to try. My wife, meanwhile, has her good job, although without insurance, and Obamacare just doubled her premium, so we can no longer afford it, so that’s just great. So she’s actually thinking about looking for a new job next year, which would mean leaving her nice, cushy job that’s so great otherwise. Pity. I hope anyone reading this has a pleasant New Year and a wonderful 2016. Cheers!
