I DID, however, have an allergic reaction to – I’m assuming – the antibiotics they put me on before the surgery because I had a UTI. I was a little bit itchy on my arms before the surgery, but afterwards it was a full-blown rash down my sides that became a traveling nightmare of itch. So unfortunately, I was not spared the itching this time either. But it was not at the negligence of the hospital crew! Progress!
They attempted to do the surgery laparoscopically, but couldn’t manage it for whatever reason. So they wound up having to do open surgery. I now sport two puncture marks and a 3 inch incision. The healing has gone okay, I’m having some minor issues with the bumper on the outside of the two digging into my skin because I may be too fat for the tube that they used. I’m waiting on the doctor to call me back to discuss that further. The pain was not as bad as I honestly expected. I haven’t had to take the opioids nearly as often as I would have figured. Tylenol and Advil have been taking care of it just fine, usually. It’s typically not so much painful as uncomfortable – like a bloated sort of “I’ve had too much to eat” kind of feeling rather than a specific sharp” I’ve had surgery” pain.
My nightmare scenario of being unable to get out of bed to use the toilet never materialized. By the time I needed to do the thing, I was able to shift myself. I’m pretty much back to where I was, except that twisting to reach things is harder. Or currently impossible. I’m sleeping with the AVAPS machine on my bed instead of in its little cubby because I cannot reach over to turn it on and off. Scootching myself in and out of bed is far more laborious at the moment, but it is not impossible. Just time consuming.
The tube is just a future proofing for now, I’m not using it at all. Every day though, we need to flush it with water to keep it happy. It is a very strange sensation to have suddenly drunk 60 ML’s of water without having swallowed it. Hopefully I don’t need to actually use the tube for quite some time. I am having no troubles chewing and swallowing, the only trouble I have eating at the moment is physically getting the food into my mouth, because my hands suck. Otherwise everything is grand.
Hopefully this is the last surgery I have to have, unless I decide to install a ventilator. Hopefully that’s some distance down the road. For now I have two tubes sticking out of my torso, and I am now a series of tubes. Like the Internet. It’s one more concession to the disease, but I’m not really having any big feelings about it. I had big feelings about the idea when it was first presented to me, and I had some big feelings when the actual surgery was scheduled. The first time. But now I think it’s been such an ordeal I’m just glad to have it done. Now I just need to have it heal and it will be another part of me and that’s all there is to that.
So two things. One, I did not die on the operating table. Two, that is the longest I have ever gone without posting. I apologize for that.
Actually, three things. I have not yet had the surgery. And oh boy is it a tale of woe and drama!
We arrived at the hospital and were wheeled back to what would be my room for my overnight stay. I got into my little dressing gown and took out my facial piercing and sat around for a long time waiting for them to come get me. Actually no, I’m misremembering. I didn’t wait very long at all for them to come get me for this one. I went back pretty quickly. They put me under, and I woke up.
Thank God right?
And then they were telling me about how they hadn’t been able to perform the actual surgery. Something about how my anatomy was wrong, how my stomach was tucked up under my ribs and they couldn’t actually get to it. My diaphragm had atrophied to the point where it was pushed up and my stomach was hiding under there and they couldn’t get to it the simple way. We were going to have to try again, with radiology.
What also sucked is finding out that they had used a skin prep for the surgery that I am allergic to. It’s called chlorhexidine and it’s very common in surgery. And because it’s very common in surgery, I make a very specific point to tell them that I am allergic to it beforehand. I kind of make a fuss about telling them that I am allergic to it. Because it’s in everything. When I woke up my stomach was covered in a brown mark, which I thought was iodine, which they should have used, so I figured I was in the clear, but two days later I was covered in a very very itchy rash, which lasted for 2 weeks. Weeks. I spent those two weeks in a Benadryl haze, covered in itchy medicine. Bastards.
The new surgery was scheduled for January 4th. Same as before, a small puncture wound to fit the tube into, minimally invasive, super quick healing, the only difference being that they were going to use radiology to guide them instead of the camera. Unlike the previous surgery, this was only scheduled as a day surgery. Again, traded in my civilian clothing and took out my piercings and made a huge fuss about the fact that I am allergic to chlorhexidine do not use it. For fuck’s sake. Jay joined me in on this refrain with the nurse. It is very very sucky to have an allergic reaction and be unable to scratch because your hands don’t work, and you also cannot apply lotion because your hands don’t work. So you have to wait for your best friend to get home from work so he can help you apply itchy cream because your hands don’t work. And also you lose two weeks of your life because your brain’s in a fog because of the medication. I was wheeled into the room finally and asked to scoot on to the operating table which I had to break it to them that I am completely unable to help them do that, so they hauled me over and I helped them as best as I could. They then asked me to lay down, and I had to reiterate what I had told to the nurse before, that I am unable to lay flat. They indicated that they had a wedge pillow for me, which set me at about a 15° angle, which was not nearly enough. I was actually kind of panicking about this. They sensed that, and put me on pure oxygen and the anesthesiologist started the calming medication. I was able to lie down and think about nothing but my breathing and force myself to pull air in and push it out and then I was asleep.
And then I was awake. And they were telling me that they were not able to perform the surgery. Because my anatomy was wrong. Because my stomach was tucked up under my ribs. Pretty much the exact same thing I had been told before. I’m not entirely sure what the radiology was supposed to do for them and why it didn’t work but the practical upshot is once again I had been put under and nothing had come of it. So they sent me home.
And the next day I broke out into a very itchy rash because once again they had used chlorhexidine on me.
There are not enough swear words in the world.
So, the only option after that was surgical. Instead of going down my throat into my stomach, they have to go through my abdominal wall straight. It’s a bigger deal surgery, and they have to knock me completely out, and it’s a bigger risk of course. A longer heal time. We couldn’t schedule the surgery for a long time, because COVID took up all of the hospital beds and they put a hold on all elective procedures. We are going to try to do it. Laparoscopically, using a tiny incision and a tiny camera. Failing that, she will have to make a slightly larger incision to put the tube in, but she’s very confident that we can do this and it will be still minimally invasive. To be honest, I will be happy if they can do this without using chlorhexidine on me. My surgery is scheduled for April 4th.
I have to say I’m pretty freaked out about this one. The surgeon still thinks it’s a day surgery and I’ll be able to go home that same day, and I hope she’s right. We’ve booked me an overnight stay just in case, and will send me home if we’re able. She went over all of the risks to the procedure, of which of course one of them being not being able to get off of the ventilator and having to spend a day in the ICU until I can breathe on my own. A person in my ALS support group had this surgery and his vital lung capacity dropped 30% afterwards. He went in with 70% and came out 40%. I’m sitting at about 35%. I am terrified about coming out of the surgery and not being able to get off of the breathing machine and having to decide if I want a vent or not because at this point I think I would want to vent but we haven’t planned or budgeted or even seeing if we can afford a nurse to be here basically 24/7 to monitor the ventilator if I have to be on one. I’m afraid of going in for surgery and coming out on a ventilator being unable to eat, drink or talk ever again. I’ve been through this twice now and I’ve suffered no problems from the anesthesia but I haven’t been put under completely with breathing support and I’m worried about them stopping my breathing and me being unable to start it on my own again. Which is you know the reason we’re doing this now instead of when I actually need the feeding tube to get this out of the way. Basically: one guy I know has a horror story and it’s got me rattled. I shouldn’t be so freaked out. I know better. It’s probably going to be just fine. There’s just some worried little part of me that is having a field day with what-ifs.
Surgery is one week from today.
They sent me a cleaning kit for my body, two bottles of cleaning solution to be used the night before and the morning of surgery. To make sure that I am clean as a whistle before they go cutting on me. The cleaning solution is… 2% chlorhexidine. The surgeon herself had provided me with written instructions and verbal instructions and she had not mentioned sending me any kit; rather, just to wash up with a kind of soap called hibiclens.
Which it turns out is also a solution of chlorhexidine.
Luckily I called her up today and she told me I could use dial soap instead and it would be just fine. If I were to actually use the soap that they recommended, we would not be performing the surgery because I would be a red itchy mess. I had given some thought semi-seriously to having Jay write on my body: DO NOT USE CHLORHEXIDINE.
So anyway that’s what’s happening. The surgery hasn’t happened yet. We’ve had two false starts, 3rd and hopefully final attempt next week. If you’re the praying sort, pray for me. Hopefully I come out of this with an additional hole in my body and it having been the last surgery I have to go through.
Hopefully they don’t use any fucking chlorhexidine.
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.
“Should I throw these out,” J asks me, indicating a pile of adult diapers beside the toilet. They have tabs to close them on the sides rather than being the step in brief kind I usually wear. I’m not able to stand and pull up briefs on my own anymore, so I bought these to try out, in a bid to hold on to my autonomy. It was a massive failure; I’m not able to get them under my ass properly, never mind operating the Velcro-like tabs with my failing hands.
“No, keep them,” I tell him. “Once I’m not able to get out of bed at all we’ll want them. You’ll need to undo the diaper, get me in the sling, lift me up, get the diaper off me, get me to the commode or whatever to do my biz and them lay out a fresh diaper. We’ll need the tabbed diapers.”
“I thought we said we didn’t want kids,” J tells me.
We laugh our asses off.
The clip on my catheter bag has somehow come undone and there is a pool of pee next to the bed. I’m mortified, of course, and feel terribly about J having to clean it up.
“Someday I’ll be dead,” I tell him brightly, smiling like a television ad, “and you’ll never have to clean up my bodily fluids again!”
He eyes daggers at me while I laugh, like, “what the fuck is wrong with you.”
I’ve been away. Obviously. I have a good excuse – my mom died. Twice, actually.
…It’s ok – she’s back with us. We’re all still getting used to everything that this entails. A new normal for everyone involved, new limits, new routines, new paranoia, new hospital bills. New PTSD for both of us.
It was 4am on a Sunday morning when she came into my room, eyes wide and her voice high pitched with panic: “I can’t breathe” between frantic gasps. I whipped off my AVAPS mask and pushed it into her hands, and she tried desperately to use it to breathe. I called 911, screaming for J, at the other end of the house and on the other side of a closed door.
He never heard me.
My mother collapsed into my wheelchair while I breathlessly gave the operator my address. Could I get her on to the floor, he wanted to know. Mentally screaming in panic, I would have given ANYTHING to be able to perform CPR on my mother. I explained I couldn’t and why. I watched my mother’s eyes roll back. She stopped attempts at breathing and slumped over.
I told the operator she’d lost consciousness, optimistically. The operator asked again could I get her on the floor. I saw flashing lights outside. I couldn’t yell loud enough to get J to come unlock the door to let the paramedics in.
I was absolutely, totally Helpless.
I couldn’t do CPR. I couldn’t get her in recovery position. I couldn’t yell loud enough for help. I couldn’t unlock the door for the paramedics. I could do nothing.
J was awakened by the paramedics pounding on the door. They came in, hauled her on to the floor and started CPR. I was a helpless audience, trapped in my bed while a room full of people in uniform brutalized my mother’s body. CPR is a harsh, ugly thing to witness – I already knew this, but I was unable to look away. I heard the word “asystole”, which my brain knew meant dead. My mother was dead. I was right. I’d watched her die. They continued to push. They wanted more room. They moved her to the kitchen. All I could do was sit in my bed and hear them work some more. I heard “got a pulse”. I heard “let’s move her”. A police officer came in and said they were talking her to Saint Vincent’s.
J was finally allowed to come to me; the emergency crew had blocked him from my half of the house. He helped me get dressed while I told him what happened, still wide-eyed with shock. We drove to the hospital. And waited. I signed a DNR, in case she crashed again. We’d talked before about it, and she’d said she wanted to be let go. I wondered if I’d fucked up already. I wondered if she would wake up. I called my brothers. I finally let myself cry. I felt scared and completely helpless.
Mom spent ten days in the ICU.
We found out later she’d flatlined again en route. We were very, very lucky to haver her still with us, but it was perfectly clear that it was a very fragile hold on life. Every minute was by chance. I visited her as often as I could. Thanks to COVID, there were some really fucked up visitation rules which meant only my older brother and I could visit. At All. Not per visit, not per day, at all. She could die any day and my younger brother an his wife weren’t allowed to see her. Her prognosis changed by the hour, and the doctors made it seem like any minute my brothers and I were going to be called upon to decide to pull the plug on her or not.
….Which was pretty fucked up, because she was conscious sometimes, just sedated as fuck. Day three she regained consciousness but couldn’t communicate because of the tubes and the drugs, and we weren’t sure how much brain damage there was from being dead for a bit. So even as they’re asking us whether or not to consider a lifelong ventilator our a graceful exit, we’re like, shit, dudes, she’s RIGHT THERE. Maybe lay off the sleepy juice for a bit and see if she can tell us what she thinks? She was conscious yesterday, why didn’t you ask her?
For most of her ICU stay, she was intubated, so she couldn’t communicate well. Just vague gestures towards her feet when they were cold. Weak motions at her face because she wanted the tube adjusted. And when she finally could communicate, she usually asked for simple things. Her eyelids were sticky. Her lips were dry. Her feet were dangling off the side of the bed; could they be lifted back into place please.
Things that an able bodied visitor would have been able to take care if in a jiffy, but things I had to call a nurse in for every. Fucking. Time. I felt useless. I couldn’t get my mother a sip of fucking water. I could fix her eye crusties in two seconds with a damp washcloth if only my fucking hands worked.
Meanwhile at home, I was left alone for the first time in years while J went to work. We were both nervous about it. The silence in the house was deafening. Mom is a quiet roommate, but I can still tell she’s around. I had to be extra careful to have my smart watch or my phone on me at all times in case something happened, so I could call J. We had to figure out lunches for me that didn’t require heating or prep that I could have in my mini fridge, since no one would be around to get me food. I ate a lot of lunchables.
I realized that I couldn’t make myself a sandwich now if I wanted to. I’m helpless to feed myself without prep.
Mom recovered enough to spare me the decision to kill her or not; in fact, got the vent removed, moved to a biPAP machine, and then to a regular nasal cannula and was moved to a regular hospital room in one day. I brought her a celebratory Pepsi, which I had to ask a nurse to pop for her. She didn’t remember anything, thanks to the sedation drugs.
After a week in the hospital, she had to do three weeks’ time in a nursing facility to recover. She wasn’t even strong enough to hold her cellphone when she was admitted. She quickly built up her strength, though, like, SUPER quickly, and though she’s not quite 100% back to where she was, she’s something closer. I was deathly afraid of her checking in and not checking out of that place, but she worked hard and busted out of the joint.
She, of course, is worried about taking care of me. She’s not back to her former caretaker duties and she may not ever be again; any time she comes in to talk to me about something, she has to sit in my wheelchair and catch her breath from coming in. Once she worked up the nerve to sit in my wheelchair again, that is; that took some working up to. I told you: PTSD. We’re not back to how things were but she’s home.
I’d give anything to be able to keep up the house and cook her healthy meals and cater to her so she can just concentrate in healing. She’s fucking DIED. TWICE. I want to give her the luxury of time to repair.
But I can’t. I’m helpless.
Helpless in my own behalf sucks and I hate it. Having to rely on others to do things for me blows.
But this helpless on behalf of others bullshit? It can fuck right off. I just want the strength to make my mom an egg sandwich. Or do her laundry. I just want to help her. Whether it’s fetching a drink or sweeping her floor.
The thing is after a year of suppressed grief, after a worldwide trauma, after trying so hard to keep your shit together and just survive a debilitating and humiliating disease, a fucking pandemic, buying a new house, moving into said house, isolating from all of your friends and family, from society, and being unable to celebrate milestones in a way that you deserve to…
The thing is, when you get that first injection. That first vaccine hit. The first hint of “maybe this is going to turn out okay”. That first glimmer of hope that maybe things can return just a little bit to normal. You find yourself letting out a breath you didnt even know you’ve been holding. Your brain shifts out of survival mode, and allows you to think and to feel a little bit of everything you’ve been holding in for the last year.
The thing is, maybe you fall apart.
Maybe fall apart and write a really angsty blog post about how it’s been seven years since you got diagnosed and you just kind of emotionally barf all over the Internet.
The thing is, I’m much better now.
The second shot was a fucking doozy, as advertised. But it came with a sense of peace. In two weeks after that, it came with the promise of normalcy. Not long after that, I had friends in my room, unmasked, chatting like nothing had ever happened. There was one quick moment of panic –OH MY GOD THERE IS SOMEONE SITTING ON MY BED WITH ME AND THERE ARE NO MASKS WHAT THE FUCK ARE WE DOING – and then it was over and then we were talking like old times. Natural. Normal.
This thing is, it was really really nice.
And then I got together with another group of friends last week. We had Moroccan food. We played games and bullshitted all night and again, it was nice. Normal. I had forgotten what conversation tasted like.
The thing is, there is definitely an end to all of the madness. I can see it from here. It’s lovely. Wait for it.
I’ve been Officially Sick for seven years now. Two years longer than the outside average life expectancy, and still doing really well, all things properly considered. Yet, for some reason, this year’s Saddiversary was really, really hard.
Like. Really fucking hard.
A solid week leading up to the actual date saw me in a total despondent state. True and proper depressive episode, sleeping and crying a lot, medicating the living shit out of myself, unable to find joy in anything, looking desperately to climb out and get just a little happy again. The tiniest bit. Anything. Please.
I imagined myself in a room. Depression Land. It’s very much like my actual room, only greatly exaggerated. The bed takes up most of it, and has shackles. I spend over 80 percent of my time in this bed. This last week I had to ask J to help me medicate the skin on my ass where it is threatening to become bedsores. Bedsores caused by sedentary lifestyle fed by depression and then feeding back into it. The bed is my world. There’s a bright spot here, a pulsing lifeline that is my laptop, my connection and my distraction and my salvation. It’s a dim light, during these episodes, the barest of dim glows, but it’s still there. There’s a bed caddy with the remote controls for my tv and my bed, my phone, and my drink. (Holy shit am I going to miss drinking soda. I will hold on to the ritual of my morning Monster energy drink for as long as I can. SODA IS AWESOME OKAY) In Depression Land, it tastes like nothing. There’s piles of blankets here but they don’t keep me warm. They entangle, instead, and stifle.
There’s a pile of luggage in the corner. It’s a matching set, poison green with little corona viruses all over them. They smell like dust and bitterness, and they represent all the things I missed out on because of the corona virus. One whole year of my extremely limited life, with my rapidly diminishing ability, gone to this fucking virus. There are twin suitcases here labeled “Portland Dining Month”. One nice sized one labeled ‘Saddiversary celebration in San Francisco with J’. One labeled ‘birthday 2020’. Six or seven labeled with various concerts and show names. There’s also a pile of cardboard boxes, hastily marked with Sharpie, “Help moving”. That one smells especially bitter.
The bitter aroma also extends to my wheelchair, relegated to a role as bathroom taxi and doctor appointment shuttle. In Depression Land, the SS Opportunity is covered in mildew and cobwebs. It never gets to go anywhere fun. She’s not my freedom, here; there’s nowhere to go. In Depression Land, this glorious machine is nothing but a tool, and a laborious one at that.
My closet, too, is mildewed. All my cute clothes relegated to the darkeness because WHAT EVEN IS THE POINT.
Books, turning to dust, snacks, tasting like ashes.
I fucking hate Depression Land.
The only good thing about it is, I know my stay is temporary. Even if it doesn’t feel like it. I’m usually able to remind myself of that, when I’m desperately scrolling through Amazon looking for some stupid little tchochke that will make me happy for five minutes or trawling the depths of TikTok to find something, ANYTHING..
Eventually, I remember.
Or in this case, eventually, the day comes and goes.
Clinic Day again, darlings. It’s virtual today, so I’m able to liveblog it. Hehehe. I apologize for not being very faithful with these updates lately. The changes I see are very slow and gradual, but I realize if I haven’t given updates for awhile, progression can seem very abrupt to YOU. So.
Spoiler alert: Not much has changed! I’ve had this 3-5 year life expectancy disease for almost 7 years now and I’m still able to walk a little. Things are, blissfully, going slooooooooooowwww.
First appointment: Nursing! I really like my nurse. We did the ALS-FRS test, which we did a week and a half ago, so SURPRISE! no changes. I didn’t have any new demands or needs, so we mostly talked about how miserable traveling in a power chair is.
Second: Pulmonary! I got my usual headpat for being good about using my AVAPS, which as usual feels a little undeserved now that I NEED it, otherwise I have nightmares about suffocating and keep waking up ’cause I’m not breathing well. He still doesn’t think I need a feeding tube yet; normally he suggests them once breathing gets below 50%, and last we checked I was 46%. My progression, though, is so slow he’s not worried about it just yet. We’ll check my breathing soon, it’s a whole ordeal and a separate appointment to get that done now, thanks to Covid. Fucking Covid. We also spoke briefly about an ALS Association event I spoke at, since he was there. I got a headpat for that, too. Yay.
Third: OT/PT! We didn’t have much to discuss because again: slow progression. I had some questions about Hoyer lift logistics, about eventually needing to get transferred to the toilet – do they have slings that uh..accommodate that? They do. My only experience with the lift (transferring to the exam table during research appointments) involved a very coccoon-like sling and I didn’t know how TF I’d transfer in that to a toilet or commode. Answer: I won’t! There’s a much easier kind of sling. I don’t need it yet or soon, but it’s the kind of thing I wonder about as transfers get a liiiiiittle bit harder month to month. So I ask now. Otherwise, the appointment went very quickly. I was reminded that hey, dummy, wrist braces exist, in fact I own a pair, and I really very should USE THEM when holding eating utensils especially. They make things Much More Stable.
Fourth: Palliative Care! This is an appointment I don’t technically need yet, not at all, but I haven’t talked to him since 2017 so I figured a check in chat wouldn’t hurt. When last we spoke, we set up my POLST (Physicians Orders for Life Sustaining Treatment – a document that tells medical professionals how far to go in order to save my life (spoiler alert – not very), kind of an Advance Directive but with a lot more weight to it)). I found out that they do NOT have a record of my Advance Directive on file, so it’s very good we spoke today. I’ll get that right over to them. The nurse is a very pleasant man to talk to, so it was lovely to chat.
Fifth: Dietician! It wasn’t the usual lovely person, so we didn’t get to chat and I was DENIED my chance for new kitten photos. Boooo. Her stand-in was a very nice woman but we only had official stuff to talk about, so it was short. Just: Keep doing what you’re doing, call us if something comes up.
It’s a recurring theme on Clinic Day. Which is a very good thing.
Sixth: Speech therapy! It WAS the usual lovely person, and I hadn’t seen her in a YEAR, so it was good to check in with her. It was another whirlwind appointment, just: make these funny faces, eat something so I can see you swallow, drink something so I can see you swallow, everything good? OK see you in 3 months.
Seventh: Social Worker! A fifteen minute chat to see if the ALS Association can do anything for me at the moment. I thanked them for the loaner power chair, which they’ve collected. Seriously. The loan of that chair saved SO much grief and damage to my own. I’m so grateful and they are worth every dime I’ve raised on their behalf. Speeeeeeaaaaaking of whiiiiiich….
***WARNING: SHAMELESS PLUG AHEAD***
So, the Walk to Defeat ALS is happening in May this year, and it’s a virtual walk again. If ya happen to have a coupla spare bucks, maybe donate to my walk?
***WE NOW RETURN YOU TO OUR SCHEDULED POST. THANK YOU***
Eighth: Neurologist! I like my new doctor. Dr. Goslin retired rather suddenly (to us; she’d been planning it for awhile apparently) late last year. I miss her like whoa, but the new one seems to know her shit and I trust her. I don’t envy her position, though, of having to fill a particularly beloved pair of shoes. There was nothing new to report on the ALS front, but there IS another drug we could try to get rid of the daily headaches, so we’re gonna give that a shot.
And with that, we’re done! 3 hours of visits in one go, rather than eight separate appointments. I LOVE THE CLINIC DAY MODEL. IT’S SO GOOD.
I’m not even talking about being touch-starved because of COVID, either, though that is also certainly a thing. I’m talking, full body contact, chins on each other’s shoulders, arms wrapped tight, feeling each other’s heartbeat hugs. Rhythmic syncing of breathing hugs. Every thing in the world is going to be okay because I have you. Here. In this moment. Hugs. Swapping body heat and comfort and love hugs.
The good shit.
I’ve been told I give great hugs. I didn’t used to. My household was not a hugging family at all. No touchy. In junior high, I’d watch the girls hug each other hello, even though they’d seen each other scarcely two hours ago before lunch, and think: I want that. So over time, I let myself do that. And I confirmed what I’d suspected all along:
HUGS FUCKING RULE.
I miss them so much. I miss the touch. I miss the ritual of it. I miss standing in front of J and throwing my arms around his neck, him wrapping his arms around my ribcage and squeezing until my spine popped. I miss the kind of hugs where the other person runs their hands over your back.
Proper hugs are another thing ALS took from me. You can not hug someone properly from a wheelchair. You get a cheek touch, clumsy arms around your shoulders while you try not to stick your face in their cleavage. Awkward. They’re still good because they’re still hugs! But they’re not GREAT hugs.
Being in a chair is lonely. Being in a chair in a pandemic is hell. I miss hugs.
If you can, today, give someone a hug for me. Get you some of that good, good oxytocin shit. Aww yiss. Hugs fucking rule. Have one on my behalf and improve your day.
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.
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!
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.
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.
Darlings, the move was a DISASTER. But it’s over! Now I just have to deal with my guilt over not being able to help unpack. J the Magnificent bought me Animal Crossing to occupy my brain instead, so my life the last month has been this
J is doing what he can, and people are offering to help, but so much is dependent on other things – for instance, I can’t have most of those boxes unpacked until I get shelves installed because I have no places to PUT things yet. My awesome brother is helping with the shelves (as well as refinishing the floors before we moved in, and installing sink and toilets, and moving an entire wall) but he’s on-call as a tow driver so he can’t come over regularly to help.
So it’s moving sloooooowly.
This might well take the rest of my life (har har) but we’ll get it there. In the meantime I’m set up enough to be comfortable in my nest of a bed, the cats are introducing themselves to each other, and I have animals to cross.
Seven years ago today, I had just started cleaning and painting my new home. I’d had keys for a scant two days and there was a lot to be done. Seven years and two days ago my dream of homeownership had finally come true. It was pretty much my dream home. Huge backyard, a shed AND two car garage for storage, five bedrooms, huge kitchen. I had such dreams for that house. I was going to convert one of the bedrooms to be a kitten room and foster kittens. I was going to install baker’s racks I my kitchen and get serious about patisserie in my spare time. My office was set up for studying for my computer science degree in the works, a spare bedroom-slash-library for guests, my bedroom with a ceiling like the night sky. It was gonna be a giant garden in the back and a haven for the snakes I was delighted to learn lived there. I was going to install bat houses.
Six years, eight weeks and one day ago I received news that changed everything.
One of the first things to hit me, after the whole “holy shit, I have a terminal disease and I’m going to die” thing was “oh no I have to sell my house.” My new dream house was two story you see. I was beyond crushed, I was devastated. I hadn’t even had it for a year and now I was looking at having to give it up. And unfortunately giving it up was not a question. I tried every scheme I could come up with. There was no way to put a master bedroom downstairs, no way to expand the downstairs bedroom to encompass a roll in shower, no way to put a lift in to get the wheelchair upstairs. The hallway was just too narrow. The layout was just too open downstairs. The only aspect of choice I had was, do I sell it now? Or do I wait until I’m physically forced out of the place.
I chose option one. The thinking was, I could get out of this house and purchase a new one while there was still ability in me to decorate the new place. If I waited until I was wheelchair-bound and had useless hands, I wouldn’t be able to make the new place my own. So I sold it pretty much right away, at a nice profit, even. It wasn’t even on the market a week. I had owned my dream house for just over two years. I rented an apartment as a temporary measure, because I knew it would be a little bit before I could find the perfect place. The new place had to be single-story, had to be wheelchair accessible or at least have the bones to renovated to be so. And crucially? It had to be affordable on what I was going to make while on disability. I had estimates of what I was going to be earning, and at the time Danielle was going to move in with me so I would have help with the mortgage.
It has turned out to be a nigh impossible task. The economy recovered in spades, and suddenly I couldn’t afford literally anything in the area. People were coming from California and other places with cash to purchase homes and I simply could not compete. Real life then conspired to interfere, Danielle and I split as friends, so I was suddenly going it alone. Jay decided to move in with me and so all of his needs also needed to be addressed in the house search. My stepfather passed away, leaving my mother unable to afford her home, and so I moved her in with me in my 2 bedroom apartment and we weren’t sure what was going to become of that, if her living with me would be a permanent solution or not. My needs became very, very complicated, my buying power dwindled to almost nothing thanks to the booming house market and the pittance you earn on disability, and my “temporary” apartment became more of an unwanted permanent fixture.
Staying permanently in an apartment was never an option though. I need a roll in shower. Apartment complexes tend to frown upon you doing demolition in their units, so installing one here is not an option. Ideally I wanted to stay in the same-ish area so I could keep near my support network. Leaving Portland metro, thus leaving the care of Doctor Goslin, was NEVER an option. I need a bedroom big enough for my bed, wheelchair, and a lift to eventually get me out of bed into the wheelchair. This place simply does not have that much space; I play a stupid game of Tetris with my wheelchair, walker, cat scratcher, and closet door every time I get dressed. And even after the economy recovered somewhat, and even though Jay was willing to commute up to an hour each way to work every day so I could extend our search parameters to include BanjoLand (where our neighbors were GUARANTEED to hate our liberal asses), there was simply nothing out there for me. Everything we found was falling apart, or the master bathroom wasn’t even big enough to get a wheelchair in, much less turnaround in, or the side bedrooms where J and my mother would be staying were closets.
Quick shout out here because credit where credit is fucking DUE. My real estate agent Christina Griffith is one of the most patient people on the face of this planet. I half expected her to give me up as a client at any time. It was frustrating for us both, but she never quit on me. I didn’t have an option to quit and she did, and I’m grateful as FUCK she did not take that route.
All I wanted was a place to live until I died, one way or another. My last breath in my own bed, with my cats beside me. No more transition housing. A place I could get around in my wheelchair, with place to store all of the necessary equipment (like a huge-ass Hoyer lift) that will become part of my life as the disease progresses, with space for the people taking care of me. (And the option for grocery delivery because I’m in a wheelchair and mom is blind and J can’t do everything.) I didn’t care what kind of dwelling it was. House, condo, manufactured home, as long as it was accessible, and affordable, I could literally give a shit. It has been the single greatest stressor in my life ever since I was diagnosed. No hyperbole. All I want is a place to just be and be allowed to die in and not have to worry about my belongings getting packed up and my cats transitioned a to new environment separate from me while I still drew breath. The actual disease and its effects have actually been secondary to all of this. My life has primarily been all about finding a home.
It’s taken five years.
One thing I’m definitely grateful for is all of the people helping me look. My realtor is amazing, as I said, (seriously if you’re in the Portland metro area look her up) and I had lots of friends and family keeping an eye out for me, as well as automated searches on places like redfin. This lead came from my psychiatrist of all people. He’d been keeping an eye out, but most of the places he found were way out of my price range. A client of his was sadly transitioning to a care home, and his wife had to sell their home. It was a depressing thing for them but could be a godsend for me – it was already ADA set up. Ramps to everything, even the backyard, doors wide enough for a chair in every room. He gave me the owner’s email address, and I didn’t have high hopes to be honest, because there was no way I was going to be able to afford this place. I contacted them anyway, and the wife turned out to be a total peach. She answered all of my questions gracefully, but sure enough their asking price was $50,000 more than I had been approved for. I told her thanks anyway. She said hang on. let’s talk. It meant a lot to her that we’d been introduced through my shrink, and she really wanted the accessibility features to be of use to someone. Let’s have me look at the place, she said, and we can discuss it.
I didn’t get my hopes up. I didn’t dare.
We toured the place, and it was such an awesome feeling to be able to actually go into a house I was looking at purchasing, and wheel around freely with nothing off-limits to me. Typically when we go to look at a house, I stay in the van while J and Christina go inside and then report back to me. All I’ve had to go off of was their opinions and maybe a video tour taken on Christina’s cellphone. But here, here I was able to see for myself. And here I was able to see myself living in this space. This could be My House. The space was big enough. There are already ramps everywhere. The shower even was already a roll in shower. It was not quite perfect, the other two bedrooms were still kind of small. But with a little renovation we could make things work. So not daring to get my hopes up, I checked with my bank to see if maybe I could get approved for just a little more money. It still wasn’t what they were asking, but it was all I could afford. The bank said OK, and I presented an offer tens of thousands less than they’d said they were going to ask, fully expecting a counteroffer or flat-out refusal.
They said yes.
I get the keys tomorrow.
It’s been a very fast roller coaster ride, having to scramble to get all the paperwork together, and proving that even on SSDI I can make the mortgage (thanks ENTIRELY to Intel’s retirement plan), getting everything coordinated and submitted and 10,000 signatures on triplicate and witnessed by two rabbis and a chimpanzee, but it’s all sorted. It’s taking literally everything I have saved and my 401(k) and what little stock I still owned, but we’re doing it. There’s gonna be some work to do, we need to move a wall to make one of the bedrooms a livable size for J. There’s painting of course, but that’s just cosmetics. My fondest wish is to see what putting in central AC will cost, because the placement of the windows are not great for the window units that I have and I am a huge baby when it comes to heat and it’s going to SUCK when I’m too hot and unable to push the covers off. I’m not sure I’m going to be afford AC, but it’s a dream I have. Buying a house is incredibly expensive and there’s always going to be one more thing to purchase that you never thought of. I have to hire movers. Not that I don’t have a squad of willing volunteers, but for one – COVID is still very much a thing, even though America has seemed to decide that it’s boring now so we’re just not gonna quarantine anymore – and for two, most of my friends are willing but not necessarily able. I’m 45 years old and most of my friends are around the same age bracket. We can’t just haul shit around willy-nilly anymore. And my adjustable bed weighs a ton and I’m not subjecting people I love to that nonsense. So I’m doing what I can and praying that I am able to afford it all. So hey, if you ever thought about dropping a dime into my GoFundMe, now would definitely be a good time.
I called all of the utilities today to transfer them into my name, and every single one of them wished me congratulations on the new house. It’s a magical phrase. My new house. I was sincerely beginning to despair it was ever going to happen, and I would be relegated to sponge baths in my bed until I needed to be transferred to a care facility. I’m so happy it was wrong. I’m so happy this finally happened. I’m so glad I get a permanent address at last. I wish it hadn’t taken so long, and I’m no longer able to do all the decorating myself, but I can be a damn good supervisor and project leader. My friends are amazing and they will help me. I will have the space worthy of dying in, at last.
I had a stray thought last night that it had been a couple of weeks since I’d updated the blog and it was probably time. I checked my blog and saw that the last post was on April 8 and I had a little baby crisis of time – holy shit it had been almost a month! It was longer than I thought! I had better get on this. I resolved to make a post the next day when I woke up, and went to sleep. Now that I’ve opened up my blog to post a little something, I’m actually awake enough to do the math and realize it had been only 12 days. Hardly a month. Calm down, past me. We’re fine.
I have absolutely no concept of time anymore, apparently.
To be honest? I started losing it when I was officially unemployed. Whilst working, it was a key part of my job to be keenly aware of what day it was, what week it was and how it relates to the rest of the workweeks, what financial quarter we were in, even. After little time away from my job, the days kind of started to blend together. It does that when you’re unemployed. The days of the week are the first thing to cease meaning anything. Or more precisely, weekends are the first concept to go. Everyone else is celebrating because it’s finally Saturday and you’re here thinking… Yeah okay, and? The days of the week all blur together eventually. And then the months. There is no clear delineation anymore between the months of the year. January? That was like a week ago wasn’t it?
Quarantine, of course, has brought the entire world to that level. Except for the “essential workers” being martyred on the altar of capitalism, a lot of us simply don’t know what time it is anymore.
And let me tell you, that is a really weird way to live when you know for a fact your time on earth is limited. “Hurry up and wait” has taken on such a different meaning. As I touched on in previous posts, there’s a part of me that feels very much like I am wasting precious time by sitting here and doing nothing. And there is that part of me that thinks if I had a complete choice in the matter, sitting in bed petting my cat and playing on the Internet is pretty much what I’d be choosing to do anyway. So imagine that… with an underpinning of urgency. There are things I really need to have done, and soon, and they’re not getting done. Now, when I have all the time in the world until I suddenly don’t. I have a will to file. I have an inventory of all of my belongings to document and set up for disposition for after my death. Holy FUCK do I have a lot of belongings. I’ve been trying to buy a house for the last five years – I should probably be starting to think about packing up. (Moving. Yeah, that’s its own post.)
Of course I need to be a little kind to myself, and realize that my capability is limited. I’m not who I used to be, I can’t just get on a tangent and sort and refile all of my paperwork in an afternoon like I used to. I can’t just decide to reoragnize and pare down my cosmetics. I have the time, I just don’t have the ability anymore. Unfortunately, I do still have that inclination. And so many afternoons I sit here in bed looking around and thinking about all of the things that need to be doing that I could do if only my hands worked. It’s not like I’m being lazy and not getting things done, I just don’t have the capability to do them myself.
I also need to give myself a little bit of shit; because while it’s true that I cannot do these things myself, I have a whole lot of friends who would happily come over and help me do exactly those things. Friends who would happily hang out with me for little while and put my stickers into albums for me while we chit chat about everything and nothing. I had a friend come by and completely clean out and reorganize my pantry for me, therefore I know these people are available and willing, I just need to ask. And I am so very bad at asking.
Obviously right now quarantine doesn’t make asking for help possible. So I have the inclination, but not the ability, and not even the ability to call for help. My only possibility is to sit here, and feel time slipping away from me while none of this gets done. I have so much to do, and so much time to do it in, and I just can’t. Time and I have a very complicated relationship right now. Someday, sooner than I’d like to think, time will run out. And there’s nothing I can do about that. There will definitely be many things left undone. I am guaranteed to not have as much time as I think, much less as much time as I want.
So in the meantime, I spend my too much/not enough time petting my cats, and playing on the internets, and stressing about everything I still have to do. I think right now with quarantine, a lot of people are feeling some version of this. And we all need to be a little gentle with ourselves right now. A little forgiving. A little softer. Not all of it’s going to get done and were going to have to be okay with that. We are all in trauma response mode right now, and for me there’s a weird sort of calm that comes with this disaster pandemic. I feel like the playing field is little more even between the world and me. Like, a lot of people understand where I’m coming from now that simply didn’t have that capacity earlier. And we all sit, and wait, and feel like we should be doing something with our time and not doing that thing and feeling incredibly guilty for it when really? We shall be congratulating ourselves for just existing right now. Things are hard. Time is its own thing, and it’s going to do whatever the hell it wants to.
I hope regardless of what’s happening in your too much/not enough time, you’re being safe and being kind to yourselves. And patient with each other.
Yesterday began quite poorly. The tube going to my catheter’s drain bag popped out during the night, and apparently I slept hard enough I didn’t wake up until you could wring out my pajamas like a washrag. Thankfully I sleep with a mattress protector so it wasn’t a total disaster. Unfortunately my port is accessed right now, so I couldn’t take a shower and had to make do with washcloths and soapy hot water.
Fortunately I have a J. He’s more amazing than I could ever tell you and OH HOW I HAVE TRIED. He’s working from home, so he brought his work laptop over to monitor work requests and emails and changed out my bed. Best. Friend. Ever. While he was putting things through the wash, he asked me where a particular soap was.
“I don’t fucking know,” I told him, exasperated and in a bad mood. “Why would I know? I haven’t done laundry in TWO YEARS.”
The universe did a record scratch and the words turned to ash in my mouth.
“Thaaaaaaaaaaaat was not a happy thought,” I said quietly. A gross understatement. I haven’t done any real cleaning in my apartment in about two years. I can’t push a vacuum cleaner or wash a window. I can barely even wash my own hands. If I didn’t have my mother living with me to bring me food, I’d be screwed.
I know I am not just worth my productivity. I know I’m worth more than what job I can do, what tasks I can perform. But sometimes it’s so easy to forget. It’s easy to feel worthless when you have no tangible contribution to make. After a lifetime of hard-won self reliance, losing that control of my own destiny is a hard lesson I’m still learning.
And until I do learn – if I do learn – then every self-awareness moment like this is going to continue to punch me in the guts. All I can do is try not to let it under my skin so much when it does.
Meanwhile, I have a J to help me wash the sheets. Even if I don’t know where the soap is.
I came into the new year at a handicap – no pun intended. The holidays weren’t particularly kind, it feels a bit like I didn’t get a proper Christmas and with my Christmases so limited I really felt robbed. The new year was particularly rough. It was a prime chance to feel incredibly sorry for myself. Everyone was reflecting on the last decade, which forced me to do so as well, primarily reflecting on how much the last 10 years took from me. I lost my romantic partner. I lost my best friend. I lost my house. I lost my health. And then everyone started talking about the new decade, and all of the marvelous opportunities it was going to present, and I’m just sitting here thinking I don’t GET another 10 years. It is supremely unfair.
So yeah, not a great start. And then the world just conspired to keep everything as shitty as possible. The idiot in charge nearly started World War III with his playground bully behavior. Australia caught fire. And now this pandemic. Everything’s going wrong. It’s very easy to feel helpless and hopeless.
At the risk of sounding like a motivational poster though? I’m in a uniquely privileged position right now. Terminal diagnosis aside, I have a LOT to be grateful for. I’m very worried about COVID of course, but not in any immediate way. I know damn well with my already hindered breathing, catching it would basically be a death sentence. But I’m smart. I’m careful. Those people I physically interact with are also careful. I worry about it in a vague way, but all of the day-to-day concrete problems that are affecting most people aren’t touching me right now and I am incredibly grateful.
I don’t have to worry about losing my job, because I’m already medically retired. I don’t have to worry about keeping my job or finding a new one when this is all over. I don’t have a job to force me to interact with the public on the daily.
I don’t havr to worry about making my rent, because I’m on a fixed guaranteed income. Until they take away Social Security and disability benefits, I am secure financially. These stimulus checks everyone’s talking about would be nice if they happen? But I don’t NEED it in a strict sense. I have savings. Granted, they are earmarked to buy a house, but if things went seriously pear-shaped I can float us for six months. This pandemic has not been a financial hardship for me.
I don’t have to worry about cabin fever, because I’m an introvert by nature. I’ve always been self entertaining. Being pretty much bedbound for the last year or so has honed my skills to a sharp point. I have a lot of things to entertain myself with. Though of course now that I’m told I can’t socialize, I’ve been wanting to. I’m not an introvert or an extrovert apparently, I’m a jerkivert. I’m more like a cat than I thought; I do crave interaction but only on my own terms. And if you tell me I must remain away that’s when I want to be around. Meow.
I don’t have to worry about supplies, because I’m naturally the sort of person who buys groceries for 12 people even though there’s only two of us. Right before all this went down, I had bought a case of toilet paper and paper towels. There is food literally overflowing my pantry, I have a freezer outside in my storage unit chock-full of food. We are well stocked for a couple of months of absolute isolation if we had to be.
I don’t have to worry about emergency supplies either, because I have so many incredible people in my life who have made a point of asking me if I need anything. I’m already well acquainted with mail order, so that’s also been a blessing, but if I needed anything in emergency I can think of six people off the top of my head who would go get it for me. I am safe and secure and well positioned for whatever needs arise.
I don’t have to worry about a support network, because I already have the best one. We keep each other safe and protected and loved and secure. We do kind things for one another whenever we can, and I quite literally do not know how I would survive any of this without them. This includes you also, dear reader. I’m reminded time and time again that the kindness of strangers is a very real thing. You keep my faith in humanity alive. You give my optimism a serious reason to exist. There’s definitely precedent.
And so until – or IF it even happens – until myself or my loved ones contract the virus, this whole pandemic thing hasn’t fazed me, really. I’m in a good position to deal with this. I’m actually in a pretty good position to support others who are going through it, and that’s a massive blessing. Or stroke of luck. Or happy circumstance. However you want to view it. Things aren’t that bleak right now. It could have been so much worse for me. I’ve said it before, I will say it again, probably 100 or more times on this blog even – I am a very lucky woman.
I’m so fortunate to have what I have.
So how are you folks holding up? Anything I can do to help you?
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.
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.
Anyway, we’re chatting about VR rigs, like ya do, and I mention my mom can’t use them because she’s legally blind. He asked how that happened, like, did she stare at the sun or something (because Jack is Like That).
“It’s age related,” I told him. “Hehe it’s literally called Age Related Macular Degeneration.”
“Ugh I hope I don’t get that. I get feebles floating in my eye and that’s bad enough.”
“Yeah. It’s genetic, too, so I’m dodging THAT bullet! Hooray!”
“Though points in your mom’s favor, she’s not likely to see Death coming unless he’s trying to do a sneaky and flank her.”
First, a quick check in about the research study in San Francisco. That’s still going on, still going well, and now that it has shifted to once a month rather than every two weeks, things are calming down and much easier. My brother Gecko is the kind of advocate a girl dreams of. He’s been amazing throughout all of this.
So, clinic. Well.
It wasn’t an easy one. My breathing is only a little weaker than it was before, so that’s good. My overall limb strength is about the same. My diet is great, my weight is stable, although I am the heaviest I have been in my entire life and I hate it, I’m doing what I should. Overall, each of my many appointments went as per usual except for two.
For my one-on-one with Dr. Goslin, I had to finally admit that over the past few months I have been losing bowel control. Admit to someone besides J who I tell every-fucking-thing to and my mother, who’s had to help me with the um. Fallout. There have been a few major accidents, and many minor ones. It’s exactly as my bladder incontinence happened, I don’t have an urge to go at all until I suddenly do, and that when I stand up to go I’m just… going. It was a fucking humiliating thing to talk about, never mind in such clinical detail and with two other people in the room with us. But those two other people were J and Gecko, people who need to know exactly what’s going on with me. She listened carefully, asked a lot of questions, and then told me that she’s never had another ALS patient completely lose bowel control. Accidents, sure. But you have two sphincters and one of them is involuntary, so there’s no reason I should lose complete control.
So that means I’m either a medical anomaly and an ALS first, at least for her, or I have another severe, separate medical issue happening.
I did not take this news very well. I’d already worked out before Clinic that the next step was going to be to speak to a gastroenterologist, and I did as much research as I dare and realize that it’s there is…really not a lot to be done about losing bowel control. I dared not delve into the humiliating tests that were likely to be performed; this has already given me too many panic attacks these last months. There are artificial sphincters that can be installed, but they only work some of the time and are not considered worth the surgery risk. Or there’s the colostomy route. Punch yet another hole in my abdomen, another medical accessory to be maintained. A very large piece of my dignity destroyed, at any rate.
…ALS sucks, don’t ever get it.
So I came away from that with a referral to a gastroenterologist, and a referral for an MRI of my lumbar spine and pelvis, just in case there is something obvious going on. Maybe the lumbar punctures I’m getting for the medical study screwed something up, though I’m pretty sure it started well before I was in the study. Maybe it exacerbated it, I don’t know. In the meantime, I was told to stop my magnesium supplement, and I’ve started taking Imodium every day. We have a plan of attack.
The last appointment for the day was with my pulmonologist. He looked over my chart notes so far for the day, and then asked me if I had thought about survival measures when the time comes and I’ve progressed too far. Do I want to be on a ventilator, that sort of thing. I told him I thought very long and very hard about these things, and so I have a POLST form (Physician’s Orders for Life Sustaining Treatment – basically an Advance Directive, but with a lot more legal weight).
“Well, if you’re considering a feeding tube,” he told me, “you had better consider that sooner than later.”
I… was not prepared to hear that. I blinked at him.
“It’s your breathing,” he explained. “Ideally we want to do the feeding tube when your breathing is somewhere between 40% and 20%. After that it becomes much too dangerous to put you under anesthesia. Right now you’re at 48%, so we’re looking at somewhere between the next six months and the next two years.”
Which, I knew this surgery was coming. Even back in the early days of diagnosis, when I looked at the roadmap ALS typically leads you down, I knew I would be getting a feeding tube before actually needed it. And I knew it was because my breathing would make the anesthesia too dangerous to wait until there was actual need. I just…
… I just wasn’t expecting it so soon.
I FULLY realize that soon is relative. I’ve had ALS for five and half years now, way longer than I have any right to expect. My progression is very slow, and I am very very very lucky. And I am very very grateful. And I expected this talk, eventually. It was just a really harsh reality check. A metaphorical punch in the gut. This is really happening, it’s really progressing, and the end stages are a lot closer than I’d like to think.
So depending on how the gastroenterologist appointments go, I may have three holes LITERALLY punched in my guts. I joked with my therapist that I’m going to need a little sidecar for my wheelchair for all of the medical gear coming out of me. I’m not really fooling anyone with the catheter bag at this point, I think. If anyone gives me more than a casual glance they can totally tell that’s what’s going on. Add to that a colostomy bag and a feeding tube, and it’s going to be nothing but baggy sweaters for me ever again.
A little bit of my old life chipped away. A new normal to adjust to. New change, new life, less a bit more dignity and control.
For now? On with the thing. This hurts, but it’s hardly the end of me. I spent last week feeling very sorry for myself, and now I will do what comes next. I will follow up with the GI and hopefully learn and control my obnoxious new symptom. I will continue with the study until it is completed or until I can’t. I will adjust to my new life of being completely on government financial support. I will embrace my new normal because it is my life and it is still possible. I’m still here dammit. And whether or not my dignity is intact, I will keep breathing until I can’t. And that’s not for some time yet.
It’s been a long time since I’ve done a general symptom check-in to let you know where my functionality is at. I also don’t think I’ve ever talked in-depth about what the ALS-FRS scale is, at least a quick peek through the tags comes up with nothing, so I think this is as good an excuse as any to go a little deeper into something that is pretty dang integral to my life now.
In the simplest terms, the ALS-FRS is a way to numerically represent my decline. It stands for ALS Functional Rating Scale, and it’s a series of 12 categories that cover the basic symptoms of ALS. You rate your functionality on a scale of 0 to 4, with 4 being completely unaffected, 0 equals no functionality at all. The FRS very helpfully provides examples of each category’s numbering. At the end, you add up your score and that gives you a numerical score that tells you how badly ALS is impacting your life. By tracking this number over a period of time, you can also determine your progression rate.
The last time I took this test was for the clinical study I’m involved in, about 3 weeks ago. I gave my answers verbally so I don’t know what the tally was, but my last Clinic Day’s score was 29 out of the possible 48.
Let me show you around the ALS-FRS while I tell you about my current state!
Normal speech processes
Detectable speech disturbance
Intelligible with repeating
Speech combined with nonvocal communication
Loss of useful speech
For a lot of people, speech is the first thing they notice going wrong. A little bit of a slur, being slightly mush mouth, nothing too dramatic. That’s called bulbar onset, as opposed to limb onset like I’ve got. Fortunately I haven’t really noticed anything amiss in this department yet so my score here is four.
Slight but definite excess of saliva in mouth; may have nighttime drooling
Moderately excessive saliva; may have minimal drooling
Marked excess of saliva with some drooling
Marked drooling; requires constant tissue or handkerchief
Again, this is a pretty common bulbar onset symptom. A friend of mine who had ALS had to keep a handkerchief in her hands at all time so as to blot up the drool. The same mechanism that doesn’t allow you to speak properly means you can’t swallow very well either, so there’s nowhere for your saliva to go. Another common thing this symptom causes is choking on your own spit a lot. Fortunately I don’t do that anymore often than I ever did. So for now, my score is a four.
Normal eating habits
Early eating problems-occasional choking
Dietary consistency changes
Needs supplemental tube feeding
NPO (exclusively parenteral or enteral feeding)
Slightly different than choking on your own spit is food going down the wrong pipe. That will eventually start to happen a lot to people with ALS. Eventually you move to a thick liquid diet (thin liquids are too easy to aspirate) and then eventually you can’t swallow at all so you have to make a choice about supplemental tube feeding or starving to death. Fortunately that decision is some distance away for me. My score here is a four.
Slow or sloppy; all words are legible
Not all words are legible
Able to grip pen but unable to write
Unable to grip pen
The key word here is functional. This scale doesn’t measure in terms of strength but rather in terms of what activities your symptoms are preventing you from doing. It doesn’t matter that my hands curl up when they’re at rest, it only matters that I can or cannot hold a pen and sign my name. It’s a very practical scale. More medicine should be based on practicality in my opinion. Unfortunately for me I do not have a perfect four in this category. I have to sign my name by writing from the shoulder rather than from the wrist in order for it to be legible at all. I can very painstakingly write a short simple note, but it’s gotten to the point where not all the words say what I meant when I wrote them. It’s hard to tell what I was going for sometimes. So right now my score here is a two.
5. Cutting food gastrostomy
Somewhat slow and clumsy, but no help needed
Can cut most foods, although clumsy and slow; some help needed
Food must be cut by someone, but can still feed slowly
Needs to be fed
Here the scale diverges. There is a 5A and a 5B. It depends whether or not you have a feeding tube. My hands fail me at this point to where I can’t cut up a steak or serve myself from a common dish. I can stab at food with a fork, or spoon something into my mouth, but if food needs cutting, someone else has to do that for me. I could probably butter my own piece of toast, but butter knives are pretty heavy actually, and so that’s becoming more and more difficult. If the butter is cold, forget it. My score here is a one.
6. Dressing and hygiene
Independent and complete self-care with effort or decreased efficiency
Intermittent assistance or substitute methods
Needs attendant for self-care
This category should probably be two, in my opinion. Dressing and hygiene are completely separate, particularly if you are a woman. As far as self dressing is concerned, men would probably score higher in this category than a woman of the same progression, simply because that dude never has to deal with bras. I could pull a shirt over my head and sweatpants on, but dressing more feminine requires so much more effort than that. We won’t even talk about shapewear. Anyway, I digress. Gender and/or biology disparities aside, hygiene is also a completely different ballpark. And yet it is one category. At this point for me, taking a shower by myself is impossible because I cannot operate the mechanism to get the showerhead to work. I have to have my mom come in and activate the shower. Once the water’s on I’m okay, but it’s extremely difficult and exhausting and I don’t feel fully clean at the end of it. I never get that freshly scrubbed feeling anymore. Toileting – and that is such a great word – is going okay in the wiping up and taking care of things department, but it’s becoming very difficult. I have to use a wand that holds toilet paper. I resisted it for a very long time simply because those devices are the punchline of jokes about morbidly obese people. I’m fat by medical directive, but I’m not morbidly obese and I am stupid self-conscious about it, and so I resisted buying a device that actually made my life easier for far too long. Yay society. So while I am able to take care of myself in this department, sometimes some help is greatly appreciated such as when zipping up boots and putting on socks. I usually rate myself as a three here, but if I’m being fully honest I’m a two.
7. Turning in bed
Somewhat slow and clumsy, but no help needed
Can turn alone or adjust sheets, but with great difficulty
Can initiate, but not turn or adjust sheets alone
See? Practicality. Pure and simple. This category represents something you don’t really think about until you start to have problems with it, and then it becomes dire. Turning in bed is no big deal until you spend literally all of your time in bed. I am so, so grateful I have an adjustable bed. My life would be so much harder without it by now. I’m not to the point yet where I’m completely helpless, I can still adjust my own blankets and adjust my body, but sleeping on my side is no longer possible. That’s more to do with breathing than physically turning in bed, and that comes later, but for now I don’t have to struggle so much to sit up in the morning because I push a button and I set up automatically. So for all intents and purposes, my score here is currently three. It’s teetering on two, but we’re not there just yet.
Early ambulation difficulties
Walks with assistance
Non-ambulatory functional movement only
No purposeful leg movement
This category is where my symptoms began. It is the most noticeable change in me. I can currently focus really hard and move my toes the slightest little bit, but with my heel on the ground I cannot lift my toes. I cannot turn my feet to left and right. I used to be able to wiggle my left little toe independently of the rest of my toes but that stupid party trick is now gone. With weight on them, my feet are now completely useless for balance. Even the weight of a blanket pressing down on my toes is too much, so I have a device on my bed that keeps the covers off of my feet. I described my legs as useless meat stilts, and that’s pretty much what they are. I can prop my body up on them and clumsily move one forward at a time to perpetrate some semblance of walking, so long as I have both hands on some sort of other assistive device. I can kick my legs up while sitting, but I can’t lift them parallel anymore. I can lift my knee just the slightest bit, but once the doctor puts any pressure on them they go right down. I’m currently able to use the walker to get to the bathroom, but any trip longer than that and I become winded and seriously worried that I’m going to fall. I’m technically able to walk still, but for all practical purposes I am in a wheelchair. My score here is a two, but in real life is much closer to a one.
Occurs with one or more of the following: eating, bathing, dressing (ADL)
Occurs at rest, difficulty breathing when either sitting or lying
Significant difficulty, considering using mechanical respiratory support
This is a very fancy word that means shortness of breath, specifically when exerting yourself. What makes you winded. Luckily my breathing is not so terrible yet that I struggle for air just sitting around, but I know that day is coming. Just not yet. I do get winded at the stupidest little things, and it is frustrating. Getting dressed for example. I break out in a sweat and breathe a little harder when I have to get dressed in people clothes. A walker trip to the bathroom leaves me very sweaty and breathless. Taking a shower involves frequent breaks to catch my breath. Talking for long stretches of time can leave me breathless. I claimed three here probably longer than I should have if I was being honest. For now I’m holding steady at a two.
Some difficulty sleeping at night due to shortness of breath. Does not routinely use more than two pillows
Needs extra pillow in order to sleep (more than two)
Can only sleep sitting up
Unable to sleep
Another fancy word for shortness of breath, but this one pertains to breathing while lying down. I don’t use more than two pillows, but my bed tilts so that’s cheating. I can no longer sleep lying completely flat, because it’s hard to breathe. Not impossible, but difficult. My score here is a two.
12. Respiratory insufficiency
Intermittent use of BiPAP
Continuous use of BiPAP
Continuous use of BiPAP during the night and day
Invasive mechanical ventilation by intubation or tracheostomy
When I was first assigned a BiPAP machine, I didn’t really need it. I had no breathing problems at all, and just enough sleep apnea to barely register. I was prescribed this machine more because eventually I was going to need it and I should get used to it sooner rather than later. That machine died, so now I’m using an AVAP machine – which is the strongest noninvasive ventilator there is. Not because I need that strength yet, but because I will. I can definitely sleep without it, but it’s beginning to get to a point where I like to have it. My breathing is still above 50%, but only just. My score here is a three. I fear this category the most, because this is what’s going to kill me.
So unless I’ve done the math wrong, my score is still 29. It’s a good thing, when the score stays steady.
So that ALS-FRS scale. It’s not perfect obviously. There are symptoms besides these that come up; my incontinence for example. There’s not a damn thing about that on the scale. There is nothing about muscle cramps or twitching. It only covers the major symptoms that happen to the most people with ALS. It is not a complete picture of living with ALS, but it is a very good numerical representation of how well someone is surviving – not necessarily living – with ALS. It is a standard against which to measure, a way to measure decline, a common language. It is a very useful start.
Oh man, so the medical trial ate my life for awhile there – I was going for 3 or 4 days every two weeks and that was kiiiiiiiinda my job and existence for a bit. With all the attending fuckery, of course.
In the meantime, I was officially and finally terminated by Intel. I have applied for SSDI and not received it yet, though I’m not anticipating any troubles there. The agent I’ve been working with has been using the phrase “WHEN you’re approved” rather than IF. ALS is kinda a shoo-in. I’m not 100% confident that there won’t be something to go wrong, this is a government thing AND a medical thing soooooooo the situation is RIPE for angst and bureaucracy to do its thang.
I lost my health insurance through Intel as of the 30th of September. I don’t have Medicare through SSDI yet, so I am in Happy Funtime COBRA Land. I’m paying $750 a month to continue my coverage.
Orrrrrrrrrrr……I will be.
I signed up for it right away. And then I got a call on Tuesday the 1st about some parts I’ve ordered for the SS Opportunity, like longer armrests. They tried to bill my insurance and Providence says I’m not covered. I panic a little but not too much; I only just signed up for it after all and maybe it takes a couple days?
Wednesday, they delivered my $17,000 box of infusion meds. Thursday, the nurse came to my home to access the port. Friday, the wheelchair peeps called because my insurance was STILL not active. I start to panic a bit more. Saturday I had the home health nurse come out to swap my catheter. Monday I got a phone call from the infusion pharmacy because guess what? My insurance is invalid! So I called Intel’s HR in a complete panic and learned:
I am covered by COBRA as of the 1st of October. HOWEVER….
COBRA is a pre-pay benefit. So…
I’m covered but it’s not active until I pay the $750.
I can’t give them a payment over the phone to sort it all out.
In fact I can’t pay them AT ALL until I receive a bill.
I won’t get a bill until the 10th of this month, and…
it will take up to two weeks for the payment to go through, AND
I’ll be billed for two months, October and November.
In the meantime I have two options:
Pay out of pocket and wait maybe months to get reimbursed once the insurance is active (Not with a $17,000 bill I’m not gonna)
Call my medical providers, explain the situation, and ask them to please try rebilling in two to three weeks? But please keep my existing medical appointments anyway?
“I will gladly pay you in 3 weeks for a doctor today.”
I just….seriously. This is what I have. This is how it works. I hate the American (lack of) healthcare system SO MUCH. I should not be running interference between my insurance company and my medical providers. I should not be spending hours on the phone. I should not be worried about the financial aspects of dying, I should be allowed to just be DYING. I should be spending my time in bed watching Carl Sagan explain the cosmos to me while eating gummy sharks and finding cute Halloween pictures on the internet while my cats sleep at my feet, surrounded by a dozen blankets.