I stopped writing about my neuromuscular disorder a while back for I started hating what I felt I had to write. I have never been one that could not worry about tomorrow’s consequences. I saw what was coming down the road and I could not bare to think of a life that way.
Physically, nothing has changed.
In fact, I’m in phase as I write this. I’ve not slept and it is morning. My wife and I are taking our first vacation since this bastard took over. I think it is a testament to the tenacity at which we both want a vacation from this. We are taking it with no rose-colored glasses on. Over the last two years, we have learned a good bit. We have progressively taken longer trips. Trying to build-up to standing multiple-overnights away. Roughly, we arranged them from least-impact to most impact: day-long outings, over-nights near friend’s homes, weekends after a 4-hour car ride, and finally a trip requiring a day’s drive. We don’t know how we will do. Me not spoiling it is going to be a miracle. Us having fun? Well, it is Fiesta in San Antonio. I’ve had to listen about Tex-Mex spring festivals since 1992. Miracles happen at festivals. We’ll see. “Laughter is the Best Medicine”, as Reader’s Digest says. One big commonality noted in clinical reports is that NMD patients exhibit broken processing when it comes to dopamine. Think of the mental issues caused by serotonin. Muscular issues are, seemingly, caused by issues with the dopamine receptors in the brain. When you do something you like, you get a dopamine boost. This would explain why flavors have always caused an endorphin rush for me. But, more germaine is the fact that we are going to be at a “Fiesta” and on vacation. The flavors will be legion.
We’ve come to accept the physiology of my being will not change. We’ve moved on to a difficulty accepting that the medical community has limited offerings for NMDs. I don’t ask to be normal. I never was and I don’t ever expect to be. I would like for my pain to max out at about 3 or 4. Another thing we learned is that when you really need pain meds, they don’t work. Every medication has limited potential. The same meds I complain don’t work now, can kill me if I take them when I don’t need them. That is totally screwed up. There is a condition called central-line apnea. Instead of the obstructive apnea we would find in the pathway from the lungs to the nose, central-line apnea deals with a stoppage from the lungs to the brain. The lungs don’t get told they need to breathe. Seems I have it. If I take my meds when my muscles are not going crazy, my system “forgets” to breathe. I carry a CPAP wherever I go. I generally take my meds, lay down and put the CPAP on. I fall asleep, eventually miss a breath or two, and then am jarred awake by the CPAP forcing air into my lungs.
Yeah, scared the hell out of me before we knew what was going on. Now, I just smile and go back to sleep. Knowing that if we have a power-outage, our full-house generator will kick in after 14 seconds. Then the time it takes for the CPAP to re-init. Yes, I’m usually awake by then, throwing the headgear off. Without electricity, the CPAP doesn’t work. If it isn’t running, there is a drag on your breathing.
Four days have passed since the last paragraph. I’m now in the breakfast cafe of the Best Western plus Atrium in Schertz, TX, just outside of San Antonio. We were on the road from 7 am until 5 yesterday, rested in the hotel and then went out for a German Fest. Now, I’m scoring some coffee and quiet time. When I take my morning meds, I go through a transition of about 2 hours while my meds kick in. Body parts shake, pain increases and decreases, areas go numb and then flare up. It’s the morning show, starring about 15 pills. I really don’t know the count, but it’s a handful that sometimes really upsets my stomach. I take the first round at 5 and then a few more at 9:30 am. If I take them all at the same time, I will sleep a good portion of the day away. Most of them are sedatives for different muscular systems of the body. It is a scary, vulnerable time for me. I don’t generally like to do it anywhere that I’m not protected, but a cafe, in a hotel, provides a good deal of anonymity and is guarded by an attendant. As long as the batteries on my laptop hold out and there is free coffee, I should be good.
Often, during the transition, I will play video games. I suck at them. I have next to no eye-hand coordination (or any coordination for that matter), but they keep me focused away from what is going on in my temple. When all is balanced, I’ll have a headache that will be with me all day. Due to the nature of headaches, I generally don’t know I have one until my head is touched and the nerves are enraged. I feel the effects of the headache, but the pain level is so low in contrast to the rest of my body, I tend not to notice. The pain amplifiers can only do so much. That is an important lesson I have learned: The body can only feel so much pain. When I’m on the up-slope of pain, I generally will do physical things that I have been waiting to do. There is no stopping the jacking up of the pain when my body wants to… so I say, “screw it”, get the job advanced and then go deal with the pain in a cold room. I occasionally injure myself doing this, causing recovery to take longer. But, things get done.
I’m looking forward to today. We hope to have lunch with a friend and his spouse. The friend is battling cancer and this may be the last time we see him. Hence, the location of the trip. Good friends hurt when you lose them. Regardless of the cause.
I’ll try to write more often. Not about me. But, about this disorder, what little we know about it, Weather phenomena, and my passion – personal information security. I haven’t written a security article in about 7 years. Time flies when you are sedated.
The abilities needed to write are there. I just need the energy to work the muscles to get them into my databases and onto the network.
Thanks for reading,
Jay C. “Jazzy J” Theriot