For the last few years I've been dealing with what my neurologist has called Cramp Fascination Syndrome in the left side of my body. Starting earlier than that, I have been dealing with Idiopathic Transient Aphasia. All my life, I have also dealt with what I can best describe as panic attacks.
I've been able to manage until recently. There would be times of more degraded ability, but for the most part it was a thing that came and went. I'd bounce back and be able to live as normal. But this past weekend I have started to notice something: My left arm has really lost muscle tone and strength, particularly in my forearm. I noticed it first when I was driving. If I had only my left hand on the wheel as I came to a stop, either a stop sign or a red light, as the forces of inertia kept me moving forward while the vehicle stopped, that arm would not be able to resist the mild forces and would begin to shake and ache like crazy.
It became more apparent at an event we took Jr to, where I helped operate a small rope bridge exercise for the boys for a bit. All I really did was grab the two upper ropes and pull them together and downward for the smaller boys to be able to reach them. But in doing this, the shaking and aches would reappear, but only in the left arm.
Yeah, I'm right-handed, and my right side is more toned than my left, but I have always been seen as the strongest person around and have had almost no issue with any task handed to me. The disparity between my arms wasn't enough to limit me or cause concern until now.
I'm not medically trained in any way beyond basic first aid, so my own self-diagnosis is not likely anywhere within accurate. But with that in mind, most doctors are surprised at how much I know and how close I can get to a diagnosis on my own. Because of that, I have been able to identify two possible conditions that account for all of this:
First, there's Multiple Sclerosis. I have had several tests to determine if that's what it is, and the doctors who have done the test have said "no, this isn't MS." But yet, the more I have read about it, and having one doctor suggest it might be MS, I am thinking that it's not been excluded from a possibility. In all that I have read, I've learned that there's no specific shaped hole that the person has to fit through for it to be quantified as MS; it's a complex disease and has a lot of variability between people who have it.
Second, there's Spinal Muscular Atrophy, or SMA. This is much more serious than MS, but can be managed to live a full life. I am less convinced that this is what it is though, as there aren't enough connections between my symptoms and it.
And finally, there's Amyotrophic Lateral Sclerosis, or ALS, or Lou Gehrig's Disease. this is the most concerning but also seems to be coming more into view as a likely thing. Some of the symptoms include muscle atrophy and problems swallowing. I definitely have muscle atrophy in my left arm and hand, and it's been quantified by my neurologist. But this increase in atrophy has me more concerned. As far as the swallowing issues, I have always dealt with a random choking sensation when I try to swallow my saliva. It doesn't usually last very long, but it does happen frequently.
I'm pretty freaked out at the possibility of it being ALS or SMA, but I can probably manage if it is MS. The more I've read about MS anyhow, I've come to think it's probably the same as Jed Bartlett's MS, relapsing/remitting, given that I have periods of feeling perfectly normal and healthy, punctuated by periods of pain and struggle around all my symptoms.
I'll try to keep this updated with the most current description of what's going on and what doctors think it is as I learn more.
Tonic - Open Up Your Eyes
I had a dream one night several years ago that makes this song so much more intense for me to listen to ever since.
I was backstage at an outdoor concert. The crowd was packed. The ring of the electric guitar began, and the crowd went crazy.
I approached the microphone on stage as the ring reached its peak and the rest of the band played the intro. I had thought the crowd was going crazy before, but somehow they found the energy to take it up 5 levels.
The intro was approaching the end and I grabbed the microphone, and just as I got the "ch-" sound out for the opening line, the crowd was still finding new levels to reach.
Then I woke up.
This might seem like a pretty vague description of the dream, but it's really hard for me to paint the picture with words. It was such a vivid dream, and I can remember all the feelings I experienced during it. I was nervous, but excited. I was confident. I walked up to that microphone stand so confidently, you'd think that it owed me money. It was such a wonderful feeling. The crowd's energy fed me. The band's energy fed me. I was full-on experiencing it.
If you think about it, along with the lyrics, you'll see the irony of it too.
Open up your eyes Don't let your mind tell the story here
My mind was telling the story.
I don't know what it means for my life, at the time of the dream (over a decade ago) or for right now. Am I supposed to explore a singing career? I don't think I'm that talented of a vocalist. Also, who wants someone with a deep bass voice singing lead for a song like this?
When I listen to the song now, it brings a lot of those feelings out, and it's a fun ride.
At any rate, I thought I would log this for my own posterity, but also to let y'all in on how meaningful this is to me.
For years (more than 20) I have been doing things the long way with PHP. One of the examples of this is processing files and putting the results in an array (or object) to serve as key/value pairs.
Consider the following:
Foo: bar Baz: biz Here's some content...
If you wanted to match these lines in a way that you only get the
Foo: bar and
Baz: biz into a key/value pair, you would need to somehow match those values into a variable. Something like this would work:
<?php preg_match_all('/^(.*?): (.*?)$/m', file_get_contents($filename), $matches);
But this will give you something like this: Array (  => Array (  => Foo: bar  => Baz: biz )
 => Array (  => Foo  => Baz )  => Array (  => bar  => biz ) )
But what if you want to have the matched group
 be the keys, and matched group
 be the values? A for loop would accomplish it, as would other array-walking techniques.
It's far easier than that, though!
<?php preg_match_all('/^(.*?): (.*?)$/m', file_get_contents($filename), $matches); $keyvaluepairs = array_combine($matches, $matches);
print_r() that resultant variable, you'll find that it's exactly what you want:
Array ( [Foo] => bar [Baz] => biz )
That's all I wanted to share. I hope it benefits you.
As I've mentioned before, I have been dealing with a weird nervous system issue for most of my life, but getting worse in the last 3 years.
Last September, I had an EMG, which is short for ElectroMyoGram. It's a procedure in which neurologists can evaluate nerve health and (hopefully) form a diagnosis. In this procedure, based on my experience, a technician will apply sticky electrodes to your skin, much like a TENS unit. Then, they will use some sort of a probe that is connected to the same system those electrodes are. Gradually increasing the current, they will apply a shock and read how quickly it travels up the nerve and how much attenuation (signal loss) there is. After that, a doctor will come in and do almost the same thing, but this time the probe is replaced by a needle that is inserted into the flesh at the site of the nerve. They will then apply a small current to it, much like the technician did, but will move around until they have found the nerve. In order to verify that they found the nerve, they might watch a monitor or listen to the signal in an amplified audio form. Once the signal has been found, the doctor will instruct you to activate the muscle in a certain way, and will read the signals that come naturally. The results of all of this poking and shocking are recorded in a digital form, and will be sent to the doctor who ordered the test.
In my case, at least today, the shocking phase wasn't too bad. What was unpleasant was when the doctor had me activate the muscles with a needle in the nerve. I remember that being unpleasant last time, but this time it was more than unpleasant. In addition to the basics of that part of the test, the doctor also worked hard to trigger a cramp in my foot so she could read what was going on. I remember last time I was uncomfortable after, but this time It was almost enough to keep me from driving home.
When I got home I took some medicine to try and calm the pain down, and it's done a good job of that. However, my ability to focus and problem solve is gone, and I'm ready to fall asleep. Back to that lyric I quoted before: the medication just numbs the brain.
The doctor today seemed very happy with the results. Not necessarily in the sense that it was a good report, but that it was a very useful report. I'm hoping so, because I don't really want to have to go through another test like that any time soon.
In the recent decade, the internet has moved away from written articles with figures and whatnot in them, in favor of things like YouTube videos. This cultural change has spread beyond YouTube and the public internet, though, and even includes major corporations, including the one I work for.
What I've found is that I am unable to really process anything that's presented in a video.
I am a decent reader, and over the last couple of decades or so, I've been able to cultivate a form of speed reading, which I use almost always. This allows me to take in loads of information rather quickly, not constrained to the limits of my ability to process spoken word, or another's ability to speak it. But when I am presented with either recommendations to watch a YouTube video to learn how to configure a piece of flight simulator software, or when I am issued mandatory education at work in the form of a video, I get incredibly frustrated, and I find that I'm unable to retain whatever it is that I observe.
When it comes to important things, where a certain set of steps must be followed precisely, or when it's a thing that I am required to do, PLEASE, I beg of you, don't throw a video at me.
We've lived in this house long enough to have experienced 2 tropical storms: Harvey and Nicholas.
Last night, Nicholas was approaching us at bedtime, and the wind and a bit of rain kicked up. Sometime around 2:30am the power went out. I left it alone, then a little while later it flickered back on briefly, then back out. When the power comes on in our house, several things make a fairly loud beep sound. When the power flickers in the middle of the night, that beeping can be disruptive to my already-light sleep.
I wasn't wearing my watch most of the night to see how I slept, and I didn't take my typical medicines that would assist in my ability to stay asleep. I figure I got segments of sleep lasting about 20 minutes each, with a period of 15-20 minutes awake in between. The awake was partially due to the storm noise, but mostly due to how my body was responding to the weather and the lack of medication. Then when the power went out, those physiological responses got worse, leading to an all around shoddy night, sleep-wise.
I got up around 7:30am and decided that 5 hours off electricity was approaching the maximum for the refrigerator, and it was starting to get warm in the house with the sun peeking through the southern bands of the storm. I somewhat robotically marched out to the garage, flashlight in hand, and laid out the extension cords, wheeled the generator to the back porch, gassed it up, and got everything running. Then I got into the house to get the portable air conditioner going, and Emily helped me with it. Then I sat for a bit to try and recover some energy before I went to boil water on the grill for coffee.
We went for a walk at one point, just to see how the neighborhood faired, and afterwards I decided it was safe to take the meds that I had skipped last night. After I did, I laid down to attempt to sleep, which was interrupted repeatedly by a wound up nearly-six-year-old, until I finally got what felt like 10 hours of sleep (it was maybe 1 hour) and felt better.
At that point, Emily had fixed me some lunch and we sat and enjoyed our food together as a family.
We had some errands to run after that, and while we were out the neighbors sent a text message declaring victory against the lack of power. When we got home, the air conditioner had already brought the house down to the "cold" we like, and we went about getting things back to status quo.
Damage-wise, all I have been able to see so far was one branch off a rotted Japanese Wax tree, which I'm already planning to cut down. The loose bark on the Crepe Myrtle trees was blasted clean off the trees as well. Some neighbors didn't do as well: One reported an uprooted, large tree. Others had fences blown over. Some neighbors reported on Facebook that they heard a tornado blow through the neighborhood overnight. That was probably when I was either actually asleep, or just almost asleep and tuned it out completely.
Total time without power was almost exactly 13 hours. The longest cycle I ran between fuelings on the generator was from 7:30am to 10:30am. I think I only refueled it twice after the initial fueling. I've decided to not take storage actions with it just yet, as there's another storm on the maps that I am unsure about for this next week or so. With that in mind, I prefer to just leave everything ready to go, and refill my fuel supply sometime in the next few days.
All in all, it looks like the area did well, and we did well here, so it wasn't really that bad from our perspective.
There are certain times that mindlessness is understandable, but here lately I have been getting rather irritated with the complete lack of intellect people are putting into things. Before I get into the details about what's getting under my skin, I'll warn you, some of this may seem very trivial and like a dumb thing to be upset about, but there are some much deeper reasons behind why it bothers me than what you'll see at the surface. If you want to understand those more, feel free to reach out to me and ask.
Working in an internet business, I'm acutely aware of what proper customer communication means, and what the lack of it can result in. When we have to restart a service, apply an upgrade, even if it's remotely possible that it's a disruptive action, we have to plan, review, schedule, notify, wait, then act. Except in the case of emergencies, this is the well understood pattern, and failure to adhere to it can result in customers getting frustrated and leaving.
Where I'm starting to see issues with it are in a variety of things I use on the internet. First and most importantly, my home internet service. Perhaps having been working for a top 5 cloud provider for the last 10 years, I've become conditioned to expecting to be notified when my service is going to be interrupted. I've sat on the other side of the modem and issued those notices, so why am I not getting them on this side from my ISP? Last week alone I had 3 days where Xfinity (I really dislike their rebranding, but that's another topic for another day) had disruptive maintenance during my working day. Given that so many people are still working from home during this pandemic, that's just absurd that they'd take such actions. All they need to do is have a subscriber notification system by which they can send messages (email, text, Twitter, whatever) and give a heads up of an upcoming service disruption. Instead, they play the "it's easier to ask for forgiveness than to ask for permission" game, and start taking the service offline before they even throw an outage notice up. I know that this is how it's going because my cable modem sits on my desk, just to the right of my work computer screen, and when the lights flicker I know they're poking at things.
If my internet service is online, other things suffer. For example, I have been using online Minecraft gaming as an outlet for my fidgety hands during meetings, and as a means of keeping social during a time when the world frowns on face-to-face time, or my own health keeps me from it. There have been a few communities I've joined, and a couple that I've basically left because while they want players to give them money for features (I've paid a couple), they nerf the game, conduct service restarts, or somehow disrupt gameplay in another way. If it wasn't a thing that I put money towards (total I'm at about $30 spend, so it's not a lot to grumble about, I know), I'd expect the unstable service and the Mickey Mouse management. But alas, I can't even expect to have a relaxing time to enjoy what I put money and time towards, and it causes me to reconsider why I even gave them $0.01 in the first place.
At least in one of the communities I've thrown money at, they've asked me to help keep the service stable, so that's worth something at least.
I'm going to probably write another private entry about another case, but for this particular entry I'll just say that I'm starting to see laziness on these topics everywhere, no exclusions.
I understand we're all exasperated at the shape of the World today, and we just want to get back to "normal", whatever that was. I just want people and businesses to use their brains, and to approach things as if they were the customer and what the impact would be.
Maybe the transit providers need to gimp Xfinity to get that point across, and just say "oops, we have a guy working on it and it'll be back in
now + 12 hours , be patient." Sure, the rest of us downstream from there will be feeling the pain as well, but I'm willing to bet money that Xfinity doesn't expect that sort of behavior, and they need 90+ days notice before a link is disrupted.
I know you're clinging to the light of day To tell you everything's a-okay And medication don't do much Yeah, it just numbs the brain
Shinedown - Get Up
This lyric paints the picture nearly perfectly. Suffering with Ankylosing Spondylitis and now suspected Multiple Sclerosis, I can't even begin to say how true this is.
I spend most of my time either in extreme pain and discomfort, or I spend it really doped up from whatever my doctors have me on at the given point in time. It's not a good balance, and it's very demoralizing. I have a nice bike that I would love to ride. I have a number of tools that are collecting dust/rust. I have a 3d printer that hasn't budged since February. I have 3 bass guitars that are rarely played. I have a mountain of reading material in the form of magazines and books that haven't moved hardly at all since they were placed on the surface where they currently reside.
I just want to be not what I am today I just want to be better than my friends might say
William Fitzsimmons - Passion Play
I want to do more. I want to be more. I want to be healthier. I want to be more social. This all feels like a giant stone tied around my neck though, and the stone is my health.
While I am writing this, I am dealing with both the AS and the MS symptoms. It's a wonder I can even put words together because I'm medicated to try and ward off the pain enough to function. I'm about to fall over the edge of consciousness though and just sit here, staring at my screen and drooling on myself. There's almost no way for me balance it on the edge of that tipping point and function without pain.
I know I have mentioned some things in past posts about what I'll blog about, but I just haven't felt up to the effort it will take to write things on those topics. That said, I would like to know what you think I should blog about.
Post a comment, let me know what you think. If I like the idea, I'll blog about it and give you credit for the topic suggestion.
I was going to post a rant here about a thing that I recently experienced at work, but decided against it after writing it all up.
Instead, here's a gif.
I have started a Spotify Playlist of songs that I think have a very distinctive bass sound. A lot of this revolves around the technique, rather than the tone, and I feel it's a lot of very fundamental bass styles that most strong bassists are able to base nearly all of their playing from. Granted, a lot of these songs are pretty new, and they're probably influenced by others for similar reasons.
The songs that I started this list from are:
The last two in this list were very influential in my desire to play bass when I was a teenager. Now that I've got almost 20 years of dabbling with the bass under my belt, I figure it's time to get serious and refine my skill. Studying these songs, along with the (currently) 15 others on the list I think will be a great place to start with that.
I don't really know what my schedule for this effort will be, but I think I will start with sharing the outcomes here on my resurrected blog. Maybe they'll even be helpful or interesting for others!
Daddy, do we have a yard stick?
It came to my realization that this ubiquitous instrument of metrology doesn't exist in our house, and likely doesn't in most houses of people around here. When I was a kid, growing up in the Midwest though, it seemed like everyone had one.
In reflecting on why we don't have one, I came up with a few plausible reasons for the lack of it:
It's a funny thing, but a thought-provoking observation to share.
One of the many reasons I built GrumpLog is because I got so tired of having to walk on eggshells with what I posted here or on Facebook.
I don't understand why the world can be so pro-first-amendment and yet ridicule and judge someone for the open expression of things that frustrate them. In my case, it was often my health, my political views, or frustrations about work. It all came to a head when a friend approached me and asked if I was doing okay. They said that their spouse saw something I shared on Facebook and was concerned that I might be suicidal or homicidal as a result.
All I wanted was a place that I could vent and not have someone try to fix it. That's why GrumpLog exists today. I'm not allowed to post in my own sites, on social media, or talk to others about the things that frustrate me or make me angry because they'll either tell me I am whining too much or they'll try to fix it. I don't want either. If I'm sharing my frustrations with you, I want either a shrug or a nod. That's it.
I do want to mention that I am not [sui|homi]cidal. While I do often struggle with depression (caused by the mountain of medical issues I deal with), it's not so severe as to make me take action with it. The next part was redacted because of the frustration that lead to the bit above.
I still have to get the responsive/mobile layouts done, but for now this will suffice.
Use the comments to let me know how you like it!
I decided it was tim(e) to modernize the site a bit. I'm working on another layout that doesn't use tables for things, but instead uses Twitter Bootstrap's 12 column grid layout.
I haven't started with making it mobile friendly yet, but I will after I get the basic layout done. As I mentioned here, I am making it not-white-on-black. For me, this is a bit harder on my eyes, but I think for most others it will be a welcome change.
Stay tuned and maybe you'll get to see the results here!
In the past years, I've developed a couple of things that I want to make known as sites that y'all might find usefulness or entertainment in.
First, let me mention GrumpLog. This is the key site that I think would be useful for people, as it allows you to either publicly or privately get your frustrations out in a place where it's encouraged and doesn't lead to arguing or judgement from others.
On GrumpLog, you can post your frustration and flag it as public or private. If it's private, only you will be able to see it. I've established a commitment that I will not view your private Grumps, and I will hold to that commitment. If you want an extra layer of security though, you can set an encryption phrase in your profile, and all your private Grumps will be encrypted in such a way that makes it even harder for me to view. But the same commitment holds up here: I will not exercise any of the tools or technologies I have to dig into your private content.
If you post a public Grump, or if you share a private share link to your private Grump, others can see the content and can (if registered) cast an Apathy vote, or they can cast an Empathy vote.
All in all, GrumpLog is a great place to get your frustrations out any time you need to.
The other is a newer thing, DazeMaker. Simply put, DazeMaker is a platform of worker nodes that take a user submitted phrase (77 characters or less) and uses neural networks to "imagine" a picture that would relate to what was submitted.
It often results in some really odd things, but it also can provide some very thought provoking imagery for your given phrases.
The generated images, or Dazes, are presented in a thumbnail view, and can be enlarged for full 512x512 views of the things. In either case, users can vote a thumbs up or thumbs down on them and share them with others.
DazeMaker also has a Discord Community where a variety of users gather to talk about the images, gaming, investing, or whatever else happens to be going on.
I encourage you to check out both of these sites and consider participating in them. One is a therapeutic outlet, while the other is just a bit of fun and oddity.
I have been struggling with whatever the heck this is a lot these last few weeks. Back in April, a good friend took me up in a Cessna 172 and allowed me to spend time in the left seat, departing from KLBX, flying down to the northern end of Matagorda Bay, then back to KSGR. I did the takeoff and downwind pattern departure, flying south/southeast, fighting turbulence and heat the whole way. Just as we approached the Gulf coast, the cramping started in. I had to tell my friend to take the controls again. A while later he handed them back to me, but it was short lived and I had to return control of the aircraft to him.
The remainder of the flight was quite unpleasant for me, and made me second guess my qualification and desires to become an actual pilot, not just a sim pilot.
This was a demoralizing blow, but I've been trying to come to terms with it. But since then, things have continued to be really rough.
I haven't been able to do much in the garage, as you all know me to do. I haven't been able to ride my bike at all this year. I haven't felt up to spending time with friends and family. All because I'm in so much pain that it limits my ability to function, I can't trust my own muscles to not cramp up or spasm in such a way that could lead to injury, or because I'm medicated such that all I can do is recline in my chair and watch something online.
Whatever this condition is, it's limiting my ability to set a good example for my son, and to spend time with him doing things that I remember my own Dad doing with me when I was young. It's also causing my car to develop flat spots on the tires, my 3d printer to collect dust, and my bass guitars to be nothing more than wall art. It's not a good way of life and I hate it.
I have an appointment scheduled with another neurologist, as the one I saw shortly after the last post about this was dismissive and ignorant to the new symptoms and only wanted to treat me for a thing he wasn't even certain I had. I'm praying that the next neurologist will listen to it all, not attach their diagnosis to one aspect of it, and help me find a means of getting back to being a functioning member of society.
For most of my life, starting in my early teenage years, I have dealt with general joint discomfort and pain. It wasn't until my late 20's that I learned I had a condition called Ankylosing Spondylitis, or AS for short.
AS is an autoimmune condition, which is believed to attack soft tissues in the body, thinking they're broken bones. In response to this, the body generates new bone growth, causing joints to fuse or develop other things like bone spurs. Typically it attacks the spine, but also can affect other major joints such as the hips and shoulders. A lot of people who have AS also suffer from things like inflammation of the iris (the colored part of the eyes), known as Iritis. AS also brings with it a somewhat random cyclical pattern of feeling good and not feeling good. The not feeling good part is usually filled with pain, stiffness, intense "brain fog", and intense fatigue.
I can say that I have experienced all that I have mentioned above at some point throughout my life. If you look at the older posts here, you'll see some of my grumbling about my health, and that's been mostly due to AS.
AS is a degenerative condition. That means it gets worse progressively over time. While it can't be stopped, there are things that can slow down the progression. I've been on some of these treatments over the years. The first treatment was Celebrex and Plaquenil.
Celebrex is an anti-inflammatory, working similarly to Ibuprofen. In fact, it's in the same family as Ibuprofen, a non-steroidal anti-inflammatory drug (NSAID).
Plaquenil is something that has gained visibility recently as some people claim it to be an effective treatment against COIVD-19, but it was originally designed to be an anti-malaria drug. When it was prescribed for me, Plaquenil worked really well at keeping the AS at bay, in an off-label use scenario. I was on it for a long time, but it eventually started to show up during my routine optometrist visits. First it looked like I had early glaucoma signs, but as technology improved and my optometrist got new equipment, she was able to determine that it wasn't glaucoma, but was instead the Plaquenil building up in my retinae. She made an immediate call to my rheumatologist (the doctor who diagnosed and was treating my AS) and had my Plaquenil treatment stopped immediately. This started a roller coaster of other treatments from a family of drugs called "biologics".
First, I was put on Humira. Humira is a Tumor Necrotizing Factor (TNF) inhibitor. The TNF factor is something that the body has that responds to inflammation. In AS, this is an attempt to stop the autoimmune response to suspected inflammation. For me, Humira seemed to work initially, but after about 6 months or so it stopped working. My dosage was increased, which seemed like it was going to help, but then it stopped helping and I went back to the other dosage. After another long span of this not working, my rheumatologist decided it was time to switch.
Second, I was put on Enbrel. Enbrel is another TNF inhibitor, but is a different formulation from Humira. While I was on Enbrel, I got two severe colds with fevers. Fevers while on a biologic are pretty serious, as they can lead to fatality if not controlled. Also, I developed warts on the soles of my feet. The warts were uncomfortable enough that I sought medical professional treatment for them, and the dermatologist (which I often typo as derpatologist) first hit them with liquid nitrogen, then had me use a chemotherapy cream on them. My body responded very aggressively to the cream, and I ended up having to get one of those knee scooter things to keep from having to walk on that incredibly sore foot all the time. I'd share pictures of it, but they easily qualify as "not safe for life". It was a miserable time, and I finally told my rheumatologist something needed to change.
For the third treatment, she tried to get me started on Simponi, but my insurance sent me and the doctor both a very angry letter saying they wouldn't approve it and that we had to exhaust their listed treatments before they would approve Simponi. So, my doctor put me on Cosentyx. Cosentyx is a IL-17 inhibitor. IL-17 is a genetic response which has similar function to TNF inhibitor, but is a different thing that fires in response to inflammation. When I started Cosentyx it didn't do anything for a while, but after about 6 months it started to work GREAT. I had a period of about 4 months where I was able to be very active, doing 10-20 mile bike rides several times a week, but then it all fell apart. It was like I hit a wall and the Cosentyx stopped working. By the end of the year I had to tell my doctor it wasn't an effective treatment anymore.
At this point, the rheumatologist decided it was time to try Simponi again. She fought with the insurance company and got it approved. Simponi is another TNF inhibitor, similar to Enbrel and Humira. I've been on it since February, and it's hard to say yet if it's going to be effective. At this point I haven't seen any evidence that it will be, but I need to give it a bit more time.
I can say that I'm glad that I saw a doctor for this, as the condition would have likely crippled me. But at the same time, I'm not confident that my current quality of life is up there and I've essentially been a lump on a chair. I have other things going on that contribute to it, but I have yet to figure out what they are and what the right treatment is. I want to do more, but I can't. I either spend my time in a lot of pain and discomfort, or I spend it drugged up to the point of wanting to sleep all the time.
I was going to write something here, but it was just me whining and complaining. All you get is this placeholder.
Last year I was dealing with a sinus infection that took a long while to shake. Since I am immunosuppressed and since the wife and kid were still going out and about somewhat, I figured it was wise to sleep in the other room for quite a while. I probably slept in there from April to July, if not longer. At some point though, I ended up back in there.
Later in the summer if not early autumn, I woke up one morning to this. It may not look like much in that clip, but it was an aggressive twitch that lasted well after I got up and moved around.
Since then, it's happened off and on quite a bit, but getting more frequent as time goes on. Somewhere along the way it also started bring really off-the-charts intense muscle cramps.
My diet, exercise (or lack thereof), and medication routines have been pretty much the same for the last few years. However, in late 2019 I started dealing with what I determined to be called "transient aphasia", mentioned in the previous blog entry. When I sought medical attention for that, about 4 MRIs revealed some areas of interest in the white matter in my brain, and the report suggested a 6 month follow-up.
Well, after that, the whole COVID lockdown thing happened and I pretty much didn't leave the house for 9 of the 12 months of last year.
This twitching has me concerned enough that I decided last month that I should get an appointment with my primary care doctor. I finally went in to see her this last Friday and she said it was either a thyroid issue or that it was multiple sclerosis.
The thyroid thing, she said, could be treated and I could expect a full recovery from it. That is, if that's what it was. Labs were drawn and I'm still waiting to receive the results.
If it's MS though, that's going to be a fun ride. She told me to go ahead and schedule with the neurologist I saw last year, as he was an expert with MS diagnosis and treatment. So today, I finally got through to the neurologist's office and have an appointment scheduled for the end of the month, the soonest they could fit me in.
I was just sitting here, about to go to bed, and all of a sudden my hand cramped up really hard. It held that way for about a minute, and has since been feeling really stiff, sore, and kinda crampy but not. I wanted to shout as loud as I could in pain, but the wife and kid are 10 feet from me, sound asleep, and I didn't want to disrupt them.
I suppose now that I've brought y'all up to speed on that, I should go medicate and get myself to bed.