Category: healtchare

Back To Work

I’m fortunate that COVID hasn’t caused me the type of stress affecting a lot of people out there. In fact it’s been a positive in many ways. As well as I’ve been doing, I still felt like I was barely keeping up with a the world around me. I’ve made good use of the time/energy this year has afforded me. However, my aches and pains are creeping back up from lack of activity. If you’ve notice that picture of me where I’m looking j-j-j-jacked, that was the result of incredible perseverence and work in 2018. Shortly after that pic I stopped working out, and after recovering for a few weeks noticed being much happier psychologically, I was enjoying things again. Working out 3x/week took everything I had… but what of the strength I built in my muscles? For many years I struggled to stand in an idle position, after 10 minutes my back would hurt too much. I’d wait in like at the grocery store sitting down or leaning. If I stopped working out, would I be like that again?


Luckily, no! I found that I maintained enough strength simply by living a more active life in general. Unlike the old days I actually had treatments that worked enough that going out and doing stuff was worth the effort.
Well. I’ve become a bit of a couch- no, BED potato again this year. Aches and pains have crept back up, and it’s especially noticeable with housework that requirse pushing, pulling, lifting, bending, etc. Luckily I can rest up to mitigate the soreness, but I’m pondering how I’ll hold up when life demands more.

I never complain without ending by explaining what I’m gonna do about it. First of all, what I’m NOT gonna do is up the dose of any painkillers. In fact, I went a couple weeks without taking any kratom to see how I held up. I was sore, but I survived – and it was far more manageable than what I dealt with daily for years, so no big deal. I’m also not going to exercise… It’s not something I could realistically expect myself to keep up with at this point.
It’s time for me once again to dedicate this big sexy brain of mine to research and planning. I got to where I am by focusing on whichever symptom was my biggest obstacle at the time, then waking up every day to research causes, treatments, and start planning. That was how I spent most of 2015-2018. The last time I went full force into solving a health issue, it only took about a month to reduce a severe symptom to a non-issue. I was dealing with severe nausea. I hypothesized the cause: stimulants causing muscle stiffness/spasms and motor tics wrenching my gut throughout the day. I identified s medication most likely to treat the root cause, but couldn’t see the appropriate doc until a few weeks later – so I had my primary write me some Zofran in the meantime so my parents could stop waking up to bathroom walls coated in barf splatter. When I eventually stated my case and was prescribed what I suspected would be the solution – Tenex – my nausea problem stopped as soon as I started taking the drug.

So what’s my target now? Sleep trouble, specifically waking up during the night. A few years ago as I was exploring everything enjoyable in life, and one of those things was food. Food can be quite delicious did you know that? I didn’t! I chunked up for a couple years (happily), but the symptoms of obstructive sleep apnea started appearing. I was still busy tacking my ME/CFS symptoms back in early 2017, so I trusted the experts in the medical field to take care of sleep apnea. After all it’s a very common thing, not like the usual mysterious shit I was used to. It should be no problem for them, right? Nope, I spent a good part of the year getting even LESS sleep with an misconfigured machine sucking on my face. I told them to discontinue the CPAP and I lost weight. I started in the 230s, and when I got down to 205lbs I stopped waking up. I thought weight loss was a cure, but it merely can improve symptoms. Sleep disturbances returned a couple months later. I’m now around 190lbs and have been for a while. I’ve done everything I could to avoid that damn face-sucking machine, but could not solve the problem – it’s CPAP time again.

This time around I’m doing ALL the work. I’m picking out and buying the machine myself. I’m choosing and tweaking the settings. I’m downloading and interpreting the data. I’m doing it all, because that’s what it takes. I’ve spent the past couple months reading all about this process and luckily there are a lot of people out there who have taken this approach. There’s so much info out there about the process of fine-tuning the machine’s hidden admin controls and interpreting the sleep data it records. I was flying blind when it came to ME/CFS, navigating a minefield with my eyes closed. This time I can benefit from the mistakes others have made before me and hopefully reach my end goal even sooner than usual.

Still, it’s shit that this time around I can’t just swallow a pill or something. Trying to sleep with something strapped to your face goes against our most basic instincts as humans, we generally don’t care for it when something’s covering our mouth/nose. These insticts get much more automatic in dimished states of consciousness, like when we’re half-asleep. Even with the right settings, it’s going to take some time to get used to the thing… but I’m faced with forming/breaking difficult habits, I think back to what it took to change my diet and drop that weight – the first couple weeks are shitty, but then you get used to it and it becomes second nature. Hell, same deal when I quit smoking! I first switched to vaping which was tough for those first couple weeks without any cigarettes. But then vaping became the norm, I tapered off nicotine, and life was good. I never imagined I’d ever live without getting up to smoke every hour. Now if I need to do something with my hands I’ll just stroke my beard.

I’m going to put this off for one more week then dive in. I need to send some paperwork for my primary doc to sign an fax to the CPAP vendor to show that it’s medically necessary, but it’s one of those things that are a mere formality – they sign those papers all the time, you just gotta ask. I’ll need to start right away once it’s delivered because you get 30 days to figure out which type of mask is ideal for you. I’m almost certainly going to need a full face mask that covers both the nose and mouth, since a deviated septum/allergies make it tough to get enough oxygen breathing through my nose. The nose-only options seem more comfortable from what I’ve read but it’s pointless if I start using my mouth as soon as I’m asleep. Remarkably, some people TAPE their mouths shut to go this route but that sounds worse than a full facemask as it is. Others use a chin strap to encourage their mouth to stay shut. I’m not sure yet if I’ll give the nose-only option a shot first… it almost definitely won’t work, but if I get 30 days to try and return the different options then maybe it’s worth a try.

Once in a while if I’m in the right mood, solving these tough problems are a puzzle I’m willing to solve and overcoming these barriers just further builds my confidence. Most of the time though, I just feel like… enough already, you know? But hey, so long as there are solutions to my problems out there somewhere, I really can’t complain. For too long I was lead to believe that my only choice was to accept a shitty life. Nope. As Hulk Hogan says:


“That doesn’t work for me, brother!”

The Absurdity of Healtchare

I learned a bit about how ridiculous the healthcare system is recently.

I had been taking Adderall just 2 or 3 times a week due to the side effects, so I was looking for something else to take during the other days. After some research I decided to Nuvigil (Armodafinil) a “wakefulness-promoting agent.” Once the patent of Provigil (Modafinil) expired, the company created Nuvigil to continue their profits. However, I had been on Provigil years earlier and read that Nuvigil is similar yet different in ways that made me want to give it a shot.

I asked my primary doctor which kind of doctor would prescribe it, and he told me neurology deals with that. I went on my insurance companies website, called some neurologists and asked if they prescribed Nuvigil. One did, and I set up an appointment. We met, I explained to him my situation, and he told me that I’m a great candidate for Nuvigil. Excellent! I didn’t realize it would be that easy. “There’s just one problem,” he says. “Insurance won’t cover it if I prescribe it, so call your psychiatrist or rheumatologist and I’ll guide them through prescribing it.” I’d never heard that one before, but I was hoping it would be an easy task.

I called my rheumatologist first since the neurologist claimed he knew the guy. My rheumatologist calls back and says “Sorry, but it would be better if you ask your psychiatrist.” Then, my psychiatrist explains to me that it’s very difficult to fight with the insurance companies to get them to prescribe a drug like this. Why? Well, they will say “Why not just take Adderall every day?” because it’s cheaper. They might cover if it I claimed Adderall didn’t work for me and stopped taking it, but I didn’t need a replacement – just something else I could take during the rest of the week. Insurance’s option for me is to either take Adderall every day or not at all, and neither of those options work.

This let me know that even if you find a doctor willing to prescribe you a drug, it doesn’t mean the insurance companies are going to go for it. It’s just yet another hurdle in the path of getting better. This situation was just one of many that opened my eyes to the fact that the healthcare system isn’t designed to make sure whatever the patient needs to feel better is done, no. It’s designed to make a profit, like everything else.

So what did I do? I kept looking, and discovered there is a legal alternative called Adrafinil that can be purchased without a prescription. Adrafinil converts to Modafinil in the body.

This entire situation, despite being a huge hassle and a game of hot potato with my doctors, taught me some valuable lessons about how to navigate our flawed healthcare system.

Dealing with Doctors

Not getting anything out of doctor visits? There are things you can do.

Anyone with a mysterious chronic illness is familiar with the disappointing routine of seeing doctors. They run their tests, can’t figure out what’s wrong, try different medications that don’t help, then don’t know what to do. There are some things you can do to get the most out of your appointments.

The visit

We’ve all had doctors that are always in a rush. They hurry you along, asking you to get to the point, and they’re out of there before you know what happened. You are paying for their time, and this is your health and your life at stake here. Warn the nurse if you have a lot to say before the doctor sees you. This way he’ll know and can deal with his other patients first, giving you all the time that you need. You need to speak up and address everything on your mind.

Doctors know far less than what you would think – it’s up to you

Doctors are used to dealing with only the most common of problems. They don’t know what to do for anyone coming in with an unconventional illness. They will run their tests, find nothing wrong, maybe try a couple of medications, but then they’ll be left scratching their heads. You can’t walk into appointments just hoping that the doctor will come up with a great idea for you – you need to have an agenda for every appointment. I understand that when you feel like crap, the last thing you want to do is research things on your own. However, once you find that first drug that makes you feel a little better, that will be just enough to help you looking for more.

Doctors often don’t understand the medications they prescribe

Doctors have a short list of medications they try people on, the drugs that are pushed on them the hardest. For example, go see a rheumatologist for your joint pain, and they will throw Neurontin and Lyrica at you. Look around your doctor’s office: You might notice that every piece of stationery has a drug name on it. The drugs you see advertised on TV are also the ones being pushed on doctors. They are not prescribing unique drugs for your unique problems, they are prescribing the most common heavily-advertised drugs that vaguely treat symptoms similar to yours. The dose of each medication is very important as well, which doctors do not always understand. 10mg might not do anything, but suddenly relief comes at 30mg. Often they will try you on the introductory dose and then move on. For many medications, the starting dose will be completely ineffective, especially for those suffering from particularly debilitating illnesses.

Educate yourself

The internet is a great resource, so take advantage of it! When looking up drug information online, don’t just look at the “WebMD” type of sites. These will tell you the “official” information provided by the drug companies themselves but don’t tell the whole story and won’t tell you what to expect. Look up sites where users discuss their personal experiences. There may be effects, side-effects, concerns, and warnings that you won’t see on WebMD. I used to think drug experience sites like drugs.com and erowid.com were just full of junkies trying to get high… no, often these people are sick and desperately trying to feel better – just like you and me.

 

You need to take an active role in your health care. Putting the effort in can be the hardest thing to do when you aren’t feeling well, but it’s something you need to do.