Breaking Radio Silence

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Sorry I haven’t written in a few days. I just haven’t had it in me. And with that, here goes a stream-of-consciousness barrage of words from the last little while.

Thursday morning, I learned a friend of mine who had been diagnosed with an aggressive form of cancer had passed away. I didn’t feel much like doing the truly optional parts of my checklist, and I was particularly sad because of the news, so I didn’t choose to write about it, though I should have.

By the time I’d recovered enough to start my day, it was time to make preparations for my radio show, which this time included something special.

The radio station that I deejay for was founded as a support community for one particular server on a superhero MMORPG called City of Heroes. We started playing the game to stay in touch with my wife’s best friend and eventually we joined the radio station community and, later, became DJs ourselves. I also found my most recent job through the contacts that I made at the station, so I’ve gotten a good deal of life experience out of that relationship.

The game itself shut down in late 2012 and the station went on to support two more games, later dropping one and picking up two more, and eventually becoming “game-agnostic,” meaning that the station doesn’t officially support one game over another – as long as the game has a social component, there’s a possibility that the station could have a show in the game. (In-game shows basically consist of character avatars gathering in one place and roleplaying a dance party, with game-related conversation going on amongst the participants and the DJs keeping the conversation going if and when there’s a lull.)

Our original game, City of Heroes, has a fiercely loyal fanbase. Many players that I know through the station have vowed never to give the game’s distribution company another dime on any future game, and many have never let go of the dream that one day, City would reopen.

Recently, it was announced that a third party had acquired enough of the game code to reopen the game environment of City of Heroes as an XMPP chat server. Roleplay could happen, but powers, even those designed solely for travel, weren’t present. Neither were enemies or NPCs (non-player characters, like mission contacts or random people on the street, for instance). But enough of the game environment was present to recreate a station show in our original format. The new product is called Paragon Chat, a take on the “City” portion of City of Heroes (heroes were all based in a fictional city called Paragon City).

Paragon Chat went live on Tuesday evening, and so I spent part of my Thursday setting up the chat client and preparing my avatar for hosting my show in the game’s nightclub, where the station hosted many of their shows.

The show itself was awash with nostalgia. Characters who haven’t seen one another for years were getting reacquainted, players were still trying to figure out what worked and what didn’t. (The chat client’s functionality is being improved slowly over what appears to be a planned timetable, so while some costume pieces and game commands may not be available now, they could be in the future.) I had done special shows in conjunction with in-game events in between City’s sunset and Paragon Chat’s introduction in the other games that we supported, and the most I ever got at one show was seven players and maybe 30 listeners to the station’s livestream. Thursday night at one point I had 24 players at the show, and peaked at 45 listeners. It seemed our community was happy to come home, or as close to home as we could get.

At around 7:30 pm, or roughly halfway through my show, I checked my blood pressure, and it was significantly elevated, so I kept an eye on it every few minutes or so. At one point, it topped out at 200/118. I was determined to finish my show, and besides, my wife was at work and would be until 11:00 pm, so I stuck it out, keeping a careful eye on things and promising both my wife and the DJ that followed my show that I’d call 911 if things got as bad as that 200/118 reading again. (The DJ that takes over from me is local, which is a rare occurrence for our station. Our DJs broadcast from all over the United States, as well as Canada and Australia, so finding multiple DJs in one metropolitan area is rare. The only two cities that we have multiple DJs that aren’t romantically involved with one another are Austin and Chicago. I brought this up because my follow-up DJ was prepared to put the show on autopilot and drive me to the ER herself.) I made it through the show and when my wife got home, we went off to the ER again, for the second time in two days. Once again, I got a Clonidine and was discharged without much fanfare.

Friday morning I saw my doctor for my annual physical and to pick up the results of the bloodwork. And that’s where things get really cool.

A1C is a measurement of blood glucose over the previous three months. A normal A1C for someone without diabetes ranges from 4 to 6, with prediabetes diagnosed for anyone ranging from 5.7 to 6.4. An A1C reading of 6.5 or higher over two tests is indicative of diabetes. My most recent A1C (when I was diagnosed) was 10.4, well into the range of uncontrolled diabetes. The lab that took my reading considers a normal range to be 4.0 to 5.6.

My A1C was 5.7. But the news got better.

A person is considered to have high cholesterol if their reading is over 200. Mine has historically been anywhere from 230-250. Triglycerides should be under 150. My highest reading has been over 900. HDL cholesterol (the good kind) should be above 39, and LDL cholesterol (the bad kind) should be below 100. Usually my HDL reading has been between 25 and 28, and my LDL has been over 150 at one point.

My cholesterol was 128. Triglycerides were 288, still not within normal range, but far better than they’ve ever been as long as I’ve been checking them. HDL was 33, still not normal, but headed in the right direction. My LDL was 37.

And to top everything off, I’d lost 16 pounds in six weeks.

So I rewarded myself yesterday with a day of not bothering with the checklist at all and just doing whatever was going to make me happy. And I still didn’t feel like writing, so I didn’t.

So that basically catches you up on the last couple of days. It’s been an emotional roller coaster, but with far more good than bad. I just wanted to savor it in the moment, knowing I could report in with the good news when I got around to it.

And I just got around to it. How’ve you been?

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July 4, 2015: Three Good Things

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For the past week, I’ve been sharing three good things about myself rather than three good things about my day. Before I get into my final list of three, I want to take a minute to say just how difficult this exercise has been. I’m not necessarily chalking that up to my mental illnesses, since a lot of people have problems writing their own objective résumé or CV. There’s a reason there are thousands of professional résumé writers in the United States alone.

All totaled, including today’s list, I’ve shared 21 things that I think are positives about myself. Some of them have been pretty obvious. Others only made the list after a struggle to be not only objective about myself but not repeat concepts. Today’s list was going to state “I’m a very caring person” until I went back and saw that I covered that idea with “having the biggest heart of anyone I know” on Sunday. For the last three days I’ve had the list up in a separate tab for reference, just to make sure there’s no repetition.

This has been an eye opening experience, and it’s something that I recommend you try, if only in private for yourself. It’s a great exercise and especially good to go back and see that you’ve been able to identify over 20 positive things about yourself when you’re having a rough time of things. While I’m not going to call anyone out, mostly because I have no clue who I’d challenge to this writing exercise, I do challenge you to try it yourself. If you blog about it, let me know in the comments so I can come cheer you on through the week that you choose.

And now for the list.

1. I’m becoming more and more health conscious as I grow older. My declining health is a big motivator behind that, but it’s becoming easier and easier to eat healthier. In the last three years, I’ve completely eliminated non-diet soda and almost completely eliminated even the diet stuff; started drinking more than my daily allotment of water; stopped adding salt to foods; started looking forward to exercise, and consider every day I don’t work out a missed opportunity; changed my diet drastically; become much more conscientious of my sleep schedule; and become considerably more aware of health issues I have and decidedly more willing to get problems looked at by the doctors. I’m actually enjoying the healthier lifestyle far more than I thought I would and wish I’d done this years ago.

2. I’m becoming more accepting of my shortcomings. Five years ago, I would have fought tooth and nail against being on disability, convinced that I had to work to find any self-worth at all. I still struggle with this sometimes, in my irrational moments, but on a “normal” day I’m very aware that I’m doing the best that I can with what I have and that I can and should be proud of the many small steps I’m making every day to get better.

3. I saved the best for last. I am in one of the healthiest marriages of anyone that I know. Many of our friends look up to us as an example of a happy marriage, even knowing the struggles that we experience and the fights that we have when our symptoms win out over rational thought. We don’t have what anyone would consider a “traditional” marriage, by any stretch of the imagination. Our gender roles are almost completely reversed – I’m more happy doing housework and cooking, she’s much more capable with power tools and working on a car. But we work well together and have the added benefits of truly being one another’s best friend. There’s no one on the planet I’d rather spend time with, rather laugh with, rather cry with, rather plan for the future with, rather grow old with. My wife is the light of my life and my reason for living. I cannot imagine my life without her. She inspires me on a daily basis and makes me want to be the better person she deserves. I fall deeper and deeper in love with her every day, The best part? She feels the same about me. We’re looking forward to being that old couple in their eighties walking hand in hand through the park while joggers run around us. And then fistbumping one another for making the damned whippersnappers have to dodge.

More than there are stars, babydoll, and until they all go out.

May 31, 2015: Three Good Things

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Today’s things are going to be kind of low-key, to match the day.

1. I made a plan of attack for my current healthcare situation starting tomorrow.

2. I got almost all of my checklist done today, once again skipping exercise and stretching. I need to figure out a way of getting that done with the wife at home.

3. I managed to make great progress with my newest character in the computer game that’s currently got my attention, far more progress than I expected to make today.

Back to Square One

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I’m writing this blog post mostly for my own information to keep track of everything that’s happened and is happening now with regard to my healthcare because I realize I am essentially back to square one.

On April 21, I had an intake appointment with Austin-Travis County Integral Care (ATCIC) for psychiatric medication management. At that time I had regular Medicare but had just applied for a Medicare plan through Blue Cross Blue Shield that included Part D for prescription drug coverage. That insurance went into effect on May 1, so the result of my intake with ATCIC was that they don’t accept Blue Medicare Advantage, so I was back to square one with regard to my psychiatric care.

I called around to find another provider and found that CommUnity Care had doctors that would accept my new coverage, so I called them to make an appointment. I was told that they wouldn’t be able to schedule a psychiatric intake unless I had a primary care physician, so being in need of one of them, I asked them to set an appointment with a PCP. In the meantime, I had gotten in touch with my previous psychiatric medication manager and she had called in a month’s worth of prescriptions for me, which meant the urgency to see a psychiatrist wasn’t so urgent, and I could wait until after I saw my new PCP to see my new psychiatrist.

On May 11, I went to see my PCP, who was a nurse practitioner. She was exceptionally thorough and made two medication changes for me. First, she added low dose aspirin to my regimen. Secondly, she asked that I start to double up on my lisinopril/HCTZ. (I would go from taking one 20/12.5 mg tablet twice a day to two twice a day.) She also explained that because I had so many health problems I would need to be seen directly by a primary care physician and not a nurse practitioner, and so she left it to my new doctor to write any prescriptions that I would need.

I called the next day to make the appointment with my new PCP and was told that the earliest appointment they had was June 30 – more than six weeks away. It meant that I would run out of lisinopril/HCTZ for two weeks (since I was doubling up without a backing prescription) before I could get another refill, but I figured I’d cross that bridge when I came to it.

That same day I got a call from CommUnity Care scheduling my psychiatric intake for May 18.

The following day, I got another call from someone else at CommUnity Care saying that I was being referred to another agency for psychiatric services, so I got in touch with my case manager at CommUnity Care (the young lady that had called me in the first place scheduling the intake) to get a clarification. She told me that yes, I had been referred out, so the intake appointment never happened.

Next came the day I ran out of lisinopril/HCTZ, and I called over to CommUnity Care to get a refill called in. I verified three times that they were calling in the combined drug and not just lisinopril. I was reassured that they were calling in the correct prescription. I went to go pick it up and discovered that they had, in fact, called in the lisinopril only version of the drug. I told the pharmacy that the nurse practitioner had called in the incorrect drug and that I would get a new prescription called in the next day.

The next day, I went over to CommUnity Care with the paperwork in my hand ordering the increase to two lisinopril/HCTZ 20/12.5 mg tablets twice a day. I was told that the nurse practitioner had changed my prescription to lisinopril 40 mg once per day. I asked why the change had occurred. I wasn’t given a reason.

The next event was my ER trip when my blood pressure spiked to 205/119. We managed to get it calmed down with a dose of Clonidine and I was given a prescription for hydrochlorothiazide (the HCTZ I was missing) 12.5 mg twice a day. I figured at least I had managed to get back to what I was taking in the first place, finally.

On Friday night, I found my old paperwork from ATCIC, including the list of Medicare providers that they carry, with mine notably absent. And then it hit me: CommUnity Care had referred me back to ATCIC, who doesn’t honor my insurance. I made it a point to call Giselle, my case manager with CommUnity Care to get things straightened out come Monday.

This morning, I was refilling my med trays as I usually do on Sunday morning when I noticed something intriguing about my HCTZ prescription. They wrote it for a quantity of 30 – 15 days’ worth of medication.

So here I am on Sunday evening, realizing that I’m honestly no farther along on this path than I was when I started. I’m once again going to run out of vital blood pressure medication well before I see someone about refilling it, and I have no current leads on getting my psychiatric medications prescribed.

Which in my mind frees me up to start the process of finding a doctor and a psychiatrist over again come tomorrow.

I’m going to call Giselle tomorrow and ask what’s the story, but I’m also going to call around and see if someone can see me earlier than June 30, as my blood pressure is now becoming my primary health concern.

It’s frustrating to feel like I’ve wasted the last month jumping through hoops only to be worse off than when I started and no further along the path to rectifying the situation.

May 30, 2015: Three Good Things

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1. Today I got almost everything on my list done. The only things that I was missing were exercise and stretching. This is the first time in three days that I’ve missed a check mark, and I’m okay with it.

2. I got to spend the day with my wife, something that I started taking for granted when she wasn’t working. Now that she’s working again, the weekends are that much sweeter. We didn’t really do much together per se, but we spent the day in one another’s company.

3. As I’ve posted here and to my Facebook wall, tonight I ate a tomato without salt. The reasons why this is a good thing (and such a big deal) can be found here.

A Cacophony of Time

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Tonight I start the slow process of resetting my circadian rhythm. I’ll be awake as late as I can and sleep as long as I can afterward, in the hope that once more I can get my body back to being unconscious from 11 pm to 6 am. It’s bad enough that I get headaches that will wake me up from time to time, but when I’m not even getting sleepy until 2 or 3 am, it’s a problem.

One of the things that I’m discovering comes with the borderline diagnosis is a need for external validation. If you’ve followed me for any amount of time on Facebook, you’ve seen that in action. Now, for the most part, that validation doesn’t have to be anything extravagant. I don’t need to be constantly told how awesome and loved and other superlatives I am; I just want someone to talk to and spend some time with me. It explains how I can be an introvert that seems to crave social contact in some way most of the time. I’m not extroverted, I just need that mental reassurance that I’m not alone.

Perhaps by now you’ve already put two and two together and realized why someone needing the reassurance of social contact spending half the night awake is a problem. Most people keep “usual” sleep schedules, which means the later it gets, the fewer people I have available to while the time away, the more antsy I start to feel, and the higher the chance there is for self-doubt to start creeping in. It becomes a very delicate balance between staying up late enough to find that social contact and staying up late enough for my mind to turn against itself. When that happens, it’s almost impossible for me to sleep until my body’s overwhelming fatigue overrides my mind’s downward spiral.

So I have a computer game to keep me company while I revolve my circadian rhythm back to a “daywalker” schedule, and I’ll have music going in the background to distract me as well. I should be fine. But if the need arises, I’m not against packing everything up and heading down the street to the local IHOP for coffee and the occasional conversation with the waitstaff.

In the meantime, my checklists are going to slide by the wayside, with the exception of my meds and my vitals. (At least, I’ll keep track of my vitals as best as I can, but if I don’t wake up until 2:30 in the afternoon, breakfast and lunch is kinda shot.) It’s gotten to the point that getting back on a typical sleep schedule is more important than perfection on my checklists, which is something that’s been eluding me while I get more and more off kilter with my rest. While perfection isn’t the goal, health is, and I’m finding it to be an increasingly unhealthy thing to stay up half the night. My mind suffers at the time and my body suffers the next day.