Tag: symptoms check in

Fed Up

tragerstreit3 Comments


It’s finally happening. I’m getting a feeding tube placed. My surgery is slated for November 24th, the day before Thanksgiving. 


I don’t NEED it yet, not even remotely. My ability to swallow has not been hindered by my disease at all. I’m still able to eat perfectly. My breathing, however, is becoming enough of an issue that this surgery needs to move forward. Any time you go under anesthesia, there’s risks. But with my breathing numbers being what they are, the risk is far greater for me, and they are getting worse the lower my lung capacity gets. We need to get ahead of the surgery before it becomes completely impossible to perform. That’s why we’re doing this now.


Just because I’m getting it now doesn’t mean I have to use it. I’ll still be able to eat normally. Some basic maintenance will have to be performed daily, just flushing the tube with water and maybe changing some gauze daily. Eventually when eating becomes a chore, I can eat what I feel like eating and then just use the tube to supplement the nutrition I’m not getting because it’s too burdensome to eat. And then of course when I’m not able to eat at all, it will be my main source of calories. But I feel like that’s a long way off. My arms are going to quit before my jaws do. I’m going to have to have someone spoon feed me, before I have to use the feeding tube, but I think I’m going to be eating for a long time still. The installation of the feeding tube is literally just because I won’t be able to survive the anesthesia with my breathing being what it is for much longer.


We had the consultation last Friday, to answer any questions that I might have and to go over what the procedure is and nail down any details. I didn’t have a lot of questions, because I am a compulsive researcher and had already looked up a lot of it. I was told they were going to keep me overnight – THAT was a surprise. All of my research had indicated that this was a simple outpatient surgery. But no, my clinic typically keeps patients overnight for observation, so this will be my very first overnight stay in a hospital! I’m not sure how I feel about that, some combination of nervous about the procedure as a whole plus annoyed about not being allowed to sleep in my own bed plus excited for a new experience. I know damn well I’m not going to be able to actually sleep that night; no one ever sleeps in a hospital. I was kind of hoping to come home after the surgery and climb into my own bed while I was still kind of doped up on painkillers.


I’m not nervous about the surgery itself at all. It’s a super basic surgery, very little can go wrong, and the recovery rates are very quick. People in my support group have said that it’s not difficult at all except for the first day. The main thing I’m worried about is being able to transfer in and out of bed with a stomach wound. I basically have to use my arms and drag myself across the bed to get in and out to use the bathroom, and it’s a HUGE effort. If I’m absolutely unable to do so though, we have a Hoyer lift, and we’ve practiced using it. We’re not exactly smooth practiced professionals with it, but I think we can get the job done. I’m also incredibly pain tolerant, so the concern isn’t really that it’s going to hurt too badly to move, more that I will be physically unable to do so. I guess we will see how that goes.


The clinic called to make the appointment on Monday, and the first appointment they had was for Wednesday November 24th, the day before Thanksgiving. The date actually worked out very well for a lot of reasons, primarily because Jay has that week off work. He takes so much time off of work to take care of me I really didn’t want him to have to take more days off on my behalf. We don’t really celebrate Thanksgiving because it’s a colonizer holiday, but we do like to eat so we typically just overeat and call it good. We won’t be able to do that on Thanksgiving this year because I’ll be waking up in the hospital with a gut wound, but we can make up for that at any time really. We will have a make up Thanksgiving dinner. Maybe even two. No one can stop me. MWUAHAHAHA


I’ve been sitting with the idea that a feeding tube was coming for over a year now, and the idea gained more solidity earlier this year when my pulmonologist basically said no. Really. You’re going to have to do this and soon. The clinic before last, I made up my mind to bring it up the next time I spoke to him, and next Clinic I was ready to make the appointment, but then my pulmonologist retired and I had a new one who wasn’t quite as gung-ho about it. I thought about it and contacted him after Clinic was over though, and asked him to set it up anyway. I’d like this over with. While I still have my contributions to my out-of-pocket maximum paid, before all that refreshes, and just so I can be done with it. I’m not in a hurry to get it done, not at all, but it’s this big deal that’s been hanging over my head for months and months.


This post is going to serve as my announcement to my friends that I’m getting this surgery the week after next. I purposely allowed myself a week to sit with the knowledge that I had the appointment and everything was said and I was ready to go. I wanted to let feelings settle in, before I was ready to answer questions and ready to talk about it. I’m doing surprisingly okay. I kind of figured it would be a much bigger deal? And maybe it will be once the surgery is done. I know I will be a bundle of nerves the actual day of surgery of course. But the significance of this surgery has not devastated me like I kind of expected it might. This is kind of it. From here, the next surgery is going to be the installation of a ventilator if I decide to have that. And I don’t think I will, at the moment, but that’s a problem for future me to work out. But this is the next big big step, the next big concession to my disease. I’m getting a feeding tube placed because I’m not going to be able to eat food like a normal human being. I’m going to have to eat blended food and give up one of the things that I enjoy very most in life. I love to eat. The main thing I’ve missed during this whole pandemic is eating in restaurants. And while getting the surgery right now doesn’t mean I HAVE to use the feeding tube, it’s an indicator that I’m GOING to, someday. Unless of course, my breathing is so shitty that it kills me first, which isn’t exactly a happier thought.


For now though, I’m handling it just fine. I’m a little nervous about the surgery itself, because I’m always nervous about surgeries, because there’s always a risk associated anytime you go under. But that’s not a big Cosmic worry, that’s just common sense worry. I’ve had ample time to mentally prepare for this. I have plans in place. We have prepared for the worst case scenario of me not being able to transfer in and out of bed. I’m doing okay. This is going to be just fine.


I can’t wait to share all the gross details with you once I’ve had it done.

Chiggety-Check In

tragerstreit1 Comment

That was the longest break I’ve ever taken. Between no longer having a job, and COVID warping the reality of time itself, the last three months have gone by in an instant and an eon at the same time.

It’s been long enough I think I need to do a general check-in. So that’s what this blog post will be all about. If you don’t care, that’s totally cool and I will have something else for you very soon.

Strength
My FRS scale has gone down a point or two. I’m beginning to notice weakness in my arms now. I can still wiggle my fingers and grasp things between my first finger knuckle and my thumb. That’s going away though. My laptop is becoming too heavy to manage. I can still just about move my toes, I can’t kick with any real strength, but I can stand as long as I’m leaning heavily on something else. This means I can use the walker for a step or two, but I haven’t tested anything longer than a couple steps lately. There’s not really any way to pick me up off the ground if I fall, here, so I’m not going to take stupid risks. I’m still able to transfer myself to my wheelchair, and to the toilet from there, so I’m still pretty independent. I can still write a little bit, especially if I’m using a special pen that one of my blog readers was kind enough to send me. Along with some lovely edible treats. The pen she sent me is a kind of crutch for my finger, and it is much more easy to control with fingers that are weak. I’m not going to be writing any new novels anytime soon, but I can still sign my name and fill out short forms.

Breath
For the longest time, we weren’t able to test my breathing because Covid. When you’re dealing with a disease spread by droplets and aerosols, the last thing you want is someone purposely and forcibly blowing air into your face. Last month during my medical trial though, after getting a Covid test to prove I was clean, we were able to test my forced vital lung capacity. The Covid test sucked so bad. They dug around in the very back of my sinus cavity and I felt like I was a dead body being prepared for mummification and they were going to pull my brain out through my nose. I was coughing and sneezing and I watery for a couple of hours after the test. It sucked, is what I’m saying. The last time we tested my breathing back in March I was at 52%. When this all started I was at 115%, to give you an idea. This last trip I tested at 46%. Quite a drop. I am definitely feeling this change, I am so much more easily out of breath. I am still breathing okay this, I only noticed when I exert myself somehow. If I lose my breath it takes me a bit longer to catch it back. There’s no need for breathing apparatus yet, except the AVAPS machine that I use at night. I’ve still got some time.

Eating
I need help cutting up my food, but I can still feed myself. I have not begun choking on food or having things go down the wrong pipe – at least no more than average people do. It’s awful when I do choke on my own spit though, because in order to get my breath back I have to take these huge ragged breaths in to be able to cough it out, and it makes this horrible death rattley noise when I do it. It scares the living shit out of everyone around me, and I don’t have the breath to explain to them that I’m all right – as long as I’m choking I’m still breathing – but it’s gonna sound like I’m dying for a minute. Which is not to say that I’m not also scared, being unable to breathe is one of the worst things in the world, but I know that the choking is only temporary. And even if I do pass out, there’s a couple of minutes before any possibility of brain damage sets in, and my airway will probably be cleared out by somebody attempted CPR and up be fine again. I have not had to make any concession to the disease with regards to how I eat. So far, we haven’t had to make any concessions to the disease in regards to what I eat, either. I am still fat under medical advice. I have an obscene amount of junk food in my room for snacking on. I mean, obscene. I’ve got a little three drawer shelf unit full to the brim, and two square baskets that slide into IKEA furniture full. I have a habit of craving something obscure, and then allowing myself to get that thing because fuck it, I’m dying, but the only way I’ll be able to find it on Amazon or wherever is by the case. So now I’ve got a case of whatever. People also gift me edible things all the time, because they are amazing, and they don’t want to burden me down with material things but they do want to give me a present. Candy is perfect in that regard. And I love it. I love it all. The problem is I don’t actually eat that much junk food, so will have a couple of pieces of whatever and then it just sits here while everything else piles up around. Hence, three drawers and two baskets. This isn’t a complaint, at all. I love candy. And obscure Australian treats, and macadamia nuts, and pop tarts, and marzipan, and Lara bars, and Apple chips, and every other thing that is currently shoved in to my little space. Love it.

Speech
My voice is becoming affected. If I talk for too long my voice goes a little wobbly and raspy. This is most likely due to my breathing more than anything, there isn’t enough breath being forced out when I speak to make my voice strong. I can still enunciate properly, and get my point across. But something’s happening there.

Mental
ALS doesn’t really affect your cognitive behavior, which is all at once the best and worst thing about this disease. You retain your faculties, but eventually you become trapped in your own body with no way to communicate, still perfectly aware and understanding of everything around you. There are some cognitive issues possible though, and I’m wondering if I’m having problems with that. It seems recently that I have much more of a problem getting my point across because my thoughts are so scattered. It could quite possibly also just be ADHD or something, but I’ve never noticed it so much as in the last year. I have lots of other ADHD traits so who knows. I was never formally diagnosed with that but I also never formally sought out a diagnosis for that. My brain has always gone very quickly in circles and I seem to say something completely unrelated to what we were talking about; but I do have a definite path that I used to arrive at what I said. We were talking about chocolate, which makes me think about dogs being unable to eat chocolate, which makes me think about a cute dog video I saw with a dog biting at a stream of air from a compressor, which makes me think of really windy weather, which makes me think of another video of an umbrella rolling down the beach with dramatic music, which makes me think of going to the beach. And that’s why when you say “I really like this dark chocolate”, I respond “we should go to the beach soon”. There’s a path there, a definite way I arrived where I did, you just don’t see it. Lately I am having trouble even explaining that path out loud, even though my brain understands completely.

Emotional
This one. This is the one I’m struggling with the most, if I’m being honest. I have the absolute worst time being unable to help myself. All my life I have been entirely self reliant, and any help I accepted was on my own terms. I obviously don’t have that luxury anymore. Friends come over and help me unpack, and I can literally do nothing to help them, and that eats at me. Even though I know they don’t mind, and are even happy to do so. I sit here in my room and see something that needs to be done, and it would take me all of five minutes to take care of it forever if I were able-bodied. But I’m not. And so it must become this hour-long effort to get someone here with enough time to spare, and explain what needs to be done, and then have them do it. And so much remains undone because it seems so stupid to call someone in here just to push a thumbtack in that had fallen out of the wall. It is frustrating in a way that I have never thought possible. And it absolutely eats at me to know that it’s just going to get worse. More than my own death, I fear being a burden. And my friends and family can say all they want, that I’m not a burden, but I will never be able to believe that. And that’s just how it is. Still, I have many more good days than bad days. I try to take things at face value as they come and be gracious about the help I do receive. I mean, I’m still going to completely obsess over it mentally and examine it from every angle in minute detail And stare at the ceiling until 3 o’clock in the morning thinking about it, but… um… Where was I going with that.

Anyway.

House
We are slowly but surely getting into this house and settling in. It is taking an excruciatingly long time because of the three people living here only one of them is able-bodied and he has a job. Thanks to some amazing friends who have come over to lend a hand, we are much further along than we would otherwise be. For example this is what my study looks like now!

My stuff’s cooler than your stuff.
I’m 45, why do you ask?

Neato torpedo. The place is actually beginning to resemble my living space now. We’ve been pulling things out of boxes that I haven’t looked at in over five years because they were packed up from the house that I owned and then just put into storage while I lived in the apartment. It’s nice to be able to go through these things, and get rid of so much. My friend Tamra did all of the work you see up there. She is absolutely an amazing person and I’m lucky to know her. We have some semblance of the living room, rather than boxes piled upon tables and couches, you could almost sit in it. We are still discovering the um.. Character that this house has. Like the skeleton of a rat in a rat trap in the crawlspace. And the very interesting decisions or more owners made in regards to the electrical wiring. And duct placement. Our back porch is still a mess of boxes and other things needing to be sorted and there’s an entire storage unit out there, full of even more stuff from my old storage that we need to go through. We are taking it a little bit at a time. This house feels much more like a home now, already, and it will only become homier.

Travel
I am still participating in a medical trial which necessitates traveling by plane to San Francisco once a month. It’s usually a two or three day trip, but it seems to take half the month to prepare and recover from it. As per my previous post, traveling in a wheelchair is not easy. I can’t tell you much about the trial itself, except that I do undergo a spinal tap each and every time. It’s… becoming routine. Which is not something I ever thought I’d say – spinal taps aren’t something I would ever think someone could get used to? But here we are. I can, however, slip you this link which details some of the preliminary findings of the trial in general. The results are looking pretty good.

Tofersen Safe, Appears to Slow Disease Progression in SOD1 ALS Patients, Phase 1/2 Trial Shows

Outside influences
I have to keep all of my mental and emotional facilities trained to what’s immediately around me, because the outside world is pretty fucking scary right now. I live near Portland, which the president is trying to paint as a lawless expanse of criminals and terrorists, but really there’s protests happening in two square blocks in the inner city and the damage is mostly confined to the federal buildings. Driving through downtown is not unsafe. The president has promised a tax break should he get reelected, which would mean disability becoming unfunded by next year, so I’m pretty scared about that. I’m really scared about the slide into fascism that our country is taking and the wannabe dictator going unchecked when he says really dangerous shit. Some really scary shit going on outside and I can’t do anything about it, so I do my best to bury my head and just not think about it. Sometimes that works. Sometimes it takes Ativan. Otherwise I spend every waking minute angry and terrified. I cannot wait for a time when a week can go by and I don’t even think about the president. I hope I live to see that.

Overall though there’s nothing too horrible or too awesome to report. I’m settling into the new normal at the house, settling into the new normal of my disease day by day, and settling into a sort of routine. One of my absolute biggest stresses was finding a house, and getting this place has helped immeasurably. So I don’t really have all that much to complain about. Overall I’m doing pretty good. I still feel like I have some time. I still have things to do, things to say, cats to pet.

And all this junk food to consume.

Feed Me, Seymour

tragerstreit5 Comments

Well hello. It’s been a minute.

I’ve had a couple of doctors appointments which I guess I should tell you about, since I tell you everything. (Just about. More than I ever thought I’d tell someone. Never did I ever think I’d be telling absolute strangers about my poop. Welcome to this!) I had MRIs done to make sure there weren’t obvious physical deformities causing the problem and there weren’t – the MRI came up normal, except I apparently have a growth on my adrenal gland? because of course I do. We’ll check on that in six months to make sure it hasn’t grown. What’s one more medical problem to keep tabs on? Add it to the pile! I mean, even if it IS cancer, the fuck are we going to do about it except have a race to see which one kills me first? Winner literally takes all.

ANYway. We started down the road of gastroenterology to figure out what was going on there, and that whole appointment was a complete farce. It started out as a disaster before we even got there -literally everything went wrong in getting me out of the house and to the appointment to begin with. The first ice of the season needed to be scraped off my windshield, and I don’t have an ice scraper in the van yet (hooray for hotel card keys!), we missed a turn, there was an accident on the road causing a delay, and then we wound up going to the wrong place altogether, which was totally my fault for assuming I knew where it was. There is a huge Providence Hospital which contains many professional medical offices inside, and that’s where my urologist was, so that’s where we went. It turns out on that very same street there is a little business park next door, which is where I should have gone. It was ridiculously close but just too far to walk in the literal freezing cold. So we had to go back across to the parking structure, load me into the van, strap my chair down, drive half a block, park, unstrap, unload, get inside. I arrived 11 minutes late for my appointment and was told that exactly 10 minutes is the cut off and I would need to reschedule. She wasn’t even allowed to ask for an exception, she cheerfully told me. I had tried to call them to tell them I was running late, but wound up in a phone tree to press one for physical address, two for the fax number, and if this is an actual emergency etc. etc. and no way to speak to a human being at all. So, irritated, I conceded defeat and made an appointment for later that afternoon with a different doctor and apologized a lot to J for making him wake up at 6AM the day after Christmas for nothing and now he had to miss even MORE work because of me.

At that rescheduled appointment, the doctor was 25 minutes late coming in (because when doctors are late it’s fine), hadn’t even looked at the MRI which had been done, and so he wound up leaving the room to go do that while we waited some more. The doctor came back, confirmed that everything looked normal there and there seems to be no physical reason for my issue. He suggested a load of tests for bacterial infections, and a host of other possible issues in my guts. Also he told me to cut out caffeine and artificial sweeteners for week and see how that went. All of this can cause loose stools, he explained, so we’ll start with the basics and go from there.

All of which has absolutely nothing to do with the main problem.

In the meantime, collect a stool sample with hands that don’t work! Poop in this thing and then stand up and grab it from under you without spilling everything – you can do that right? Here’s four tightly capped containers – threemwith liquid to spill everywhere! – and tiny little spatulas to collect the sample. And gloves that you can’t put on because, again, your hands don’t work. Easy peasy!

I am legitimately afraid of the prep work that will be required when he decides I need a colonoscopy. I quite literally do not know how I’ll pull that off.

I’m sensing echoes of my treatment course with the urologist, where we try a whole bunch of stupid things that aren’t going to make a lick of difference, but at least we can be said to have tried something. And then we’ll get tothe invasive as hell tests and conclude that welp, there’s weak muscles there and that’s probably the problem. BECAUSE I HAVE A NEURODEGENERATIVE DISEASE. Because of course actually listening to me in the first place and taking into account I have a disease that’s killing all of my muscles is just crazy talk. My urologist outright stated I had no strength in my pelvic floor and then still wanted me to try Kegel exercises. YES LET’S EXERCISE MUSCLES THAT DON’T EXIST SURELY THAT WILL SOLVE EVERYTHING. My gastro apparently is focusing on the loose stool part of the equation as if somehow that’s magically going to help me retain poop. I guess the problem WILL go away once they get me constipated enough, and we’ll just ignore that that comes with its own problems. And as with my urologist, I am 100% certain that the ultimate solution is going to be surgical, it’s just a matter of waiting for the specialist to arrive at that conclusion.

So there.

This last Thursday was my follow-up with Dr. Goslin. I reported in everything that I just told you about, and she agreed that the ultimate solution will probably be surgical. And in the worst segue ever, like, “oh, speaking of surgery… ” she asked if I had given any more thought about a feeding tube.

I hadn’t come prepared to have that conversation. I repeated what I had told the pulmonologist, that I knew I was going to get one eventually, but I hadn’t really thought of it happening yet. She repeated his point about the breathing being the accelerator of the timeline; it’s not that I can’t eat on my own, it’s that my breathing is declining and is making the surgery more dangerous. She said that she really liked to strongly consider it once breathing hits 50%, and I’ve been hovering around 48% for a little while. It’s a bit different from the 40 to 20% that the pulmonologist told me. Whereas he had told me somewhere between six months and two years, she made it sound like, “so what are you doing on Wednesday?”

Even though I’ve been mulling over since last clinic, I still haven’t actually visualized that happening in a practical way. It’s an idea, not a visualization yet. It looks like I have to start that process now. She pulled out a rubber torso that had feeding tubes installed in it, to show me what to expect. She went over the basics on how to take care of it, and stressed that I’m welcome to eat for as long as I can, this won’t interfere with anything, it just needs to be flushed with water once a day. She gave me a photocopy of a photocopy of a photocopied pamphlet titled “So They’re Telling You to Get a Feeding Tube”. It was written by one of her patients and was actually pretty informative. It talked about who pays for supplies, how to get supplies, recommended procedures for care, what to expect from healing, and things like that. It kind of read like one of my blog posts if I’m being honest. Without the sarcasm. I’m grateful it exists, and really, really grateful I’ve got friends who’ve dealt with them personally, both as patient and provider to answer all the questions I know will come up.

It’s an outpatient surgery, but she said they like to keep you overnight for this one, just to make sure everything’s okay. It’ll be my first overnight stay in a hospital ever. For now I’m thinking it over and tentatively making some minor plans, but nothing set in stone yet. We’ll talk about it more in depth next month at clinic. I need to schedule it around the clinical trial that I’m still participating in. It shouldn’t be that big a deal. Physically. Psychologically, emotionally, it is a Very Big Deal.

It’s just that with the catheter, this, and a colostomy bag in my future, I’m beginning to feel like a reverse porcupine. A little more Capital-S sick. A little closer to the end of the journey. It’s hard to think about. I don’t want to think about it. I’m death positive as hell but that doesn’t mean I’m in a hurry. I’ve still got a lot more to say. More I want to do. So much more food I want to eat. None of this means I can’t do those things, it’s just a reality check that my timeline is more abbreviated than I want to admit.

And that really sucks.

In the meantime, I’m going to eat all of the delicious food that I can and get remarkably fat. That’s gonna rule. March is Portland Dining Month, where a lot of local restaurants serve a special menu on the cheap, and this year I’m going to take SUCH advantage. Food is awesome. Eat something delicious on my behalf, darlings, because food is amazing and so are you.

Scars

tragerstreit3 Comments

ALS is whittling my body, and marking it as it goes.  Most of the changes to my body are slow, gradual shifts that are only noticed once the damage has gone pretty far.  Holy shit, I’ll realize one day, the palm of my hand is concave at the base of my thumb.  Huh.  My calf just tapers from my knee to ankle, instead of the graceful curve it used to have.  A slow, glacial injury without drama, but still with much import.

Some of the marks ALS has left on me were more sudden; sharp, violent signs of change.  I’m no stranger to scars – I used to self-harm as a teen, into my twenties, and what is a tattoo after all but a pattern of scars filled with ink?  Each of these little marks my disease has left me tells a little piece of my story – a concession, a loss, a search for an answer.

The first scar is the first nail in my coffin.  One and a half inches, on the outside of my left thigh.  A thin, straight line of white against pale skin, flesh tone once described as “ghost-ass white”.  I’m regaining sensation there, but for a long time it was a patch of numb skin.  I got this scar from the biopsy that sealed my diagnosis.  A little chunk of flesh taken to examine for nerve degeneration, degeneration that was confirmed and my fate thus sealed.

The second scar was First Blood. An L shaped mark behind my right side, under my rib cage. I took a fall getting out of a car, catching my flesh on the corner of the door as I went down. My first disease related injury, and sadly not the last – but so far the only one to leave a mark on the map of my body.

The third scar is two-part. A dash and a dot. The scars of my port surgery. A dot over the right artery in my neck, where a line was fished through, snaked into my system of valves and tubes and blood, and connected to a bubble of plastic that rests under the second scar. A one inch line cut and pulled apart for the port to be shoved in and connected to the plumbing. This was a violent scar but a relief to get; it’s made infusions of medicine indescribably easier. My only visible to the public scar, a surgical badge of Legitimately Sick.

The fourth scar is one of persistence. A year of puncturing the port for infusion has left a pink dot under the incision line. Scar tissue building up with each stab, eventually making the stabs less painful. A welcome scar.

I have an appointment on the 20th of May to discuss acquiring my fifth scar, the scar that will hopefully make my life oh-my-GOD so much easier. I’ll speak with a urologist actually familiar with ALS and therefore not liable to suggest that I do some motherfucking Kegels to keep from peeing myself all the time. I’ll ask for a superpubic catheter to be inserted, and hopefully get approval and a surgery date. And hopefully then I can go back to wearing clothes that I don’t have to strategize how to get out of in 30 seconds or less otherwise they get peed on. I wanna wear my shark onesie again.

I’m willing to get a scar over it.

Clinic Day

tragerstreit1 Comment

Okay kids, it’s that time again. Let’s have the update on the status of things.

My first appointment of the day was with the social worker from the ALS Association. I was introduced to a new employee, and I had been asked if this new employee could sit in with me for the whole day to get an idea of what clinic is about. I’ve had a couple people sitting with my sessions; I think I’m a good candidate for kind of easing someone into the job. I’m not so far down the road that I’m a bitter, depressing train wreck, I’ve got a pretty good attitude about things, and – as evidenced by this blog – I am not opposed to sharing. He was a really nice guy and understood a lot of the gaming and geek references that J, Gecko, and I shot back and forth with each other throughout the appointments as usual. There was nothing new to report on my part for this segment, the house search is still ongoing, the appeals for help are coming along, I’m doing okay here.

Second appointment was with Kelly the dietitian. Because she is also my friend, she had brought me birthday presents of two graphic novels from a series I adore called Lackadaisy. Happy birthday to meeeee! The official part of my appointment went smooth as usual, I received my typical good-natured lecture about drinking water instead of soda, otherwise everything checked out. I remarked to Tony, the observer, that presents aren’t usually part of appointments, but I would never be upset if they were. ALS shuld come with fabulous prizes. Or at least an administrative assistant. Kelly is incredibly thoughtful and it’s a pleasure to be her friend – not just for the comic books.

Third appointment was nursing. I had a few things to talk about here, things that would be addressed by the corresponding specialists as the appointments happened that day, but it’s always good to give the nurse a heads up so she knows what to follow up on.

Fourth was respiratory. My absolute least favorite appointment of all time. We started with the standard cough check, which is still great. Second thing we always do is check my inhale capacity, a test where I put a mask over my nose and mouth and inhale as sharply and strongly as I can. I’ve always done really well on this test. The respiratory specialist agreed with me and told me my sucking was great, upon which J, Gecko, and I did our level best to not lose our shit laughing. We are 12. The last test is the worst one, where I lean into a mask again with my nose plugged and after a couple normal breaths I forcibly exhale as much as I can and keep exhaling and keep exhaling until I feel like I’m breathing myself inside out, and then sharp inhale. I do this three times. During this appointment, the test machine said “great effort!” on all three tries, which it doesn’t always do, so I felt really encouraged. Until she told me my breathing had actually still gone down a bit. Not as dramatically as before, though. Still not dangerous levels yet, but still very much declining. I tried not to get discouraged and mostly succeeded.

Appointment number five was neurology with Dr. Olney, the new partner for Dr. Goslin. I mentioned to him the biting my tongue in my sleep thing, and how I’ve been using a night guard to get around it, and he asked me a very obvious question. “When did you start your new medication, again?” I replied it was… Right around when I started biting my tongue. Derp. It had not occurred to me at all that it might’ve been the side effect of the new medication, but when he asked that question it seemed very obvious that it was the problem. It’s still not a dealbreaker, just like the weird sleep pattern is not dealbreaker. That is the price I pay for not spiraling into a black mood at 4 AM every day, and it is worth the price of admission. I also talked to him about bladder control, or in my case the absolute lack of, as a follow-up to my previous conversation with Dr. Goslin. She had told me what my options were, and I went home and researched the mall because that’s what I do, and I had pretty much made up my mind how I would like to address this. I’m getting really sick of wearing adult diapers, they’re expensive, and they don’t always work properly and I wind up wetting the dang bed anyway, and I’m getting preeeeeeetty tired of sitting in my own pee. I have two options for a catheter, one is the traditional Foley catheter which is just a tube snaking into your urethra and a bag attached to the other end. It’s functional, but prone to infection, and for women it’s not something that is fun to have to sit on at all times. The other option, the one I’m now pursuing, is called a superpubic catheter. It’s where they punch a hole into your abdominal wall, connecting a tube through there, which drains into a bag, same as the other. It’s reversible, it’s not a horrible procedure to have to endure, and it would eliminate the need for a very uncomfortable tube in a very sensitive place. We talked about my previous experience with the urologist, how I stopped going to her because it was obvious she had no idea what ALS was. (Here’s a clue: we are not going to fix my problem by doing Kegel exercises.) He gave me the names of two urologists that have worked with their patients before and were trusted. I’ll keep you posted on how this goes.

Sixth appointment was pulmonology. The last clinic had me meeting with the pulmonologist also,and so this is a new part of the Clinic routine. My standard physician was on vacation in New Zealand (jealous!) so I had seen a practice partner. Who I actually really liked, though my regular doctor isn’t a bad guy at all; his partner has a better sense of humor is all. He had grabbed my breathing machine records from the net, because my AVAPS automatically uploads my sleep reports to the cloud and that’s not even creepy at all what are you talking about. He was overall pretty happy with my results, but still chided me about needing to use my machine for more than four hours a night to get the best results, and more than 60% of the time. I was properly chastised and promised to be better about using the machine. Which I stayed true to by the way. So far. J came over and helped me this last weekend with cleaning and organizing, and now my AVAPS doesn’t live on the arm of my wheelchair or the corner of my bed anymore, it has a proper home now, on a shelf just out of reach when I’m lying in bed. Since I have to wake up properly and sit up to turn the machine off, I’m not pulling the mask off after only four hours anymore. I also was encouraged to keep up with breath stacking. Because of course I was.

Seventh and final appointment was with PT/OT. I didn’t get to see Deb unfortunately, but I like all the specialists. We breezed through the appointments since I didn’t really have anything to report. We tried the grip meter on my left hand just for funsies, and it registered nothing at all. “…You got it to move,” she told me encouragingly. But not enough to register as a grip. Meh. I promised to hit them up when I start needing help with other things, like toileting and whatnot. I’m still doing pretty okay on my own with those things, for now. But I will be very happy when I don’t have to get up to pee anymore. I can still do the necessary things, but only having to do them once a day instead of four or five will be a very welcome change.

So that’s what we did. And that’s how it went. Steady as she goes, with nothing new to report except a 6% decrease in breathing capacity. They didn’t even have me bother talking to speech therapy this time; I never have anything to report. Oh, there is one weird thing that happened. We did the FERS scale and my self-evaluation actually had me at 32, higher than the 26 I was last time. When I got the letter afterwards, they hadofficially put me at a 30. Which is still higher than it was last time? I have another appointment with Dr. Goslin in a few weeks and I will ask her about that then.

And now you are up-to-date.