Tag: god dammit all anyway

I Feel

tragerstreit4 Comments

In the early days of my disease, when encountering difficult things, or when someone would give me sympathy, I would say, “oh it hasn’t BEGUN to get hard.” For years. It wasn’t to be a doomsday preacher or anything, just acknowledgement of a fact. It was going to be harder someday, so I should both appreciate the good stuff while I had it and be prepared for when they did.

Things are officially Hard.

Several phrases describe me now that both hurt to hear and seem so surreal. “Late-stage ALS.” “Effectively paralyzed from the neck down.” Statement of fact. I don’t think that I get to have another birthday. True things. I am, technically, on a ventilator – while I CAN breathe without the AVAP, I choose to use it because it SO. MUCH. EASIER. But it all leads to I am capital D Dying.

Only.

Only I don’t FEEL like I’m Dying. Or even dying. I expected to be in a constant state of misery, when it got this far. I’m not. My body doesn’t work but nothing hurts. I feel FINE, it’s literally just that I can’t BREATHE. There is no deathbed, it’s just my tempurpedic.

My disease doesn’t feel awful, it just manifests as a thousand inconveniences. I would have posted months ago, but I was waiting to get my speech-to-text software running. Now that it’s installed and troubleshot and running, I find that it won’t work for me because my voice is too soft and the AVAP bakes be sound like I hab a code. It’s not the end of the world, it just means I must use the onscreen keyboard and type things out. Inconvenient. I can control my laptop using my eyes, but I can’t install anything because Windows’ little “are you SURE you want to allow this software to make changes “ prompt disables the eye gaze software so I can’t click Allow. Frustrating. But not a crisis.

Some day sooner than I would like, the ventilator won’t be strong enough. I’ll take the self checkout, because like HELL am I getting a ventilator surgically installed (you can fuck off with that ok thx bye. It is a viable option for a lot of people, but I absolutely do not want it). But that day will come, because I don’t fancy suffocating. And on that day, chances are I’ll feel fine except for breathing.

When I die, I’ll say goodbye, I promise. Until that day, expect more fuckery.

Third Time’s a Charm

tragerstreit1 Comment

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.

That sucked.

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.

Helpless

tragerstreit2 Comments

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.

She’sdeadshe’sdeadohfuckshe’sdeadshejustfuckingDIEDjesusfuck

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.

Being this useless blows goats.

Hypocrite

tragerstreit1 Comment

Me: “Some diseases are invisible. Just because you can’t physically SEE pain, doesn’t mean it’s not there. It’s not up to you to validate someone’s disability; no one should have to prove they’re ill. There are no ADA police to determine who qualifies as disabled or not.”

Also me: “Motherfuckers buying ADA seats at theater performances should have to fucking PROVE THEY NEED THAT SEAT. I am so sick of shit selling out because some bitches with no actual mobility problems bought out the only SIX goddamned wheelchair spots in the whole fucking theater! WHAT IS YOUR MOBILITY PROBLEM, MOTHERFUCKER, THAT YOU NEED TO SIT THERE.”

….This is why, anymore, I don’t ask friends to join me at events. I don’t wanna see five mobility spots taken up by four able-bodies schmoes and me.










Unkind

tragerstreit1 Comment

I was told twice yesterday that I had been unkind. Once about a caustic post I’d made that I didn’t realize had such a caustic tone, which I didn’t intend at all. Once about letting in-character anger spill over into an out-of character moment during a game.

It’s fucking with me more than I want to admit out loud.

I want to think I’m patient and a nice person. I want to BE a kind and soft person. With swearing as needed. I also want to think I can take constructive criticism. Both times, I tried to take the information in with a whole mind and open heart. I freely accepted valid points, admitted areas of ignorance – I genuinely did not realize my irritation with a sub-group of people spilled over into a perception of complete disdain and impatience for a related whole category of people. I vowed to be more aware, and work on it, and thanked them for bringing it to me. It’s a brave thing, to tell a friend they’re being a bit of a bitch.

But it’s fucking with me.

I don’t want to be unkind. It bothers me that someone would think I am. It bothers me that I speak without careful consideration, to have words and actions misconstrued.

So I lie awake until 3AM mulling over every interaction I had that day, wondering who else thought I was being a bitch, and what I can do to make amends. Usually these criticisms are self-inflicted, so coming from an external source, that knows me well, is especially jarring.

Before I moved away from Sacramento, several friends told me later, I became a bit of a bitch. My joking a little too caustic. I wondered if it were a subconscious self-defense mechanism, distancing myself from people I cared about in an effort to make it less shitty to leave.

I’m terrified of doing that same thing, knowing that I’m dying. From Diagnosis Day I have been fearful of being that embittered person in a wheelchair, lashing out at loved ones because I’m afraid to leave them. To be remembered as a total and complete bitch at the end of my days, in an effort to somehow distance myself from them so that the parting will be easier. Knowing it won’t help a goddamned bit. I do not wish to be a caustic person with nasty words where my love should be.

I’m glad my unkindness was called out. I’m glad I have time to work on it.

But until I am nothing but kind, it’s gonna fuck with me.










Stuff Keeps Happening

tragerstreitLeave a comment

So! Today is the last day of the first run of Radicava. I’m confident at this point that any side effects are tolerable, and I want to continue. The only potential things I’ve noticed is that there MAY be an uptick in the frequency/severity of my headaches, but it’s nothing I can’t tolerate, and there’s been a few times when there’s been a weird panick-attacky feeling, where my heart is beating in my throat, but that always goes away. Labs will be drawn to make sure I’m not experiencing anything serious, of course, but my own internal feeling is that everything’s GO for continuing.

Whether this is even doing any good, I won’t know until March, the next Clinic Day. But it’s not hurting anything, so we’ll keep it going. This also means I’ve asked to go ahead with the port install. It will be a vast relief to no longer have these tubes coming out of my arm that need babying, not least of which is because the adhesives that protect the PICC line itch like a MOFO.

Since my fall last Tuesday, I’ve noticed my hip hurting a bit, one spot particularly. I kept expecting a bruise to form, but it never did. Two nights ago, I was pushing on the spot, to figure out exactly where it hurt, and my fingers found a hard lump that rolled around a bit under my skin at the joint. And I remembered wayyyyyyyyyyy back at the beginning of my Godzilla Disease diagnosis attempts, how we initially thought the problem was in my hip, and then I got an MRI, and the MRI showed a small tumor thing in my hip meat. It was deemed medically uninteresting, though, and ruled out as the cause of my woes. I was told that it had probably been there, like, forever, and wouldn’t be a problem, but maybe keep an eye one things and recheck it in a few years.

I guess, yeah, it’s been a few years, so it’s time to get the dang thing rechecked. So THAT will be fun, as I can’t really get up into MRI machines these days. I’ll make an appointment soon. One more damn thing. I’m sure it’s fine, but dang, man.

I’ll let you all know when I get the port installed. 😀










Time to Take the TMI Train to Tinkle Town!

tragerstreit4 Comments

Ok seriously, this is a TMI warning. There be candid, unglam talk about pee and even some butt stuff. So uh. Yeah. Proceed with discretion.

Soooooooooo the main reason I have not been posting is two-fold, with the reason being DEEEPRESSSSHUNS, stemming from 1) my stepfather dying and now my mom lives with me, and 2) a new symptom which is KICKING MY ASS in all kinds of fun physical, mental, and emotional ways. My surprise roommate situation – that will get its own blog, don’t you fret. Things are actually settled and pretty ok on that front now; that’s the GOOD part about avoiding blogging during a crisis – you get to walk in at the end of the story!

Ok so I just checked the archives for the first time I wrote about this thing and it was March of 2016. So I need to stop calling it a new symptom. Duly noted, self. Well. It was kinda a one-off thing, it happened a couple of times? But the last few months it’s been a serious deal and I am seriously not dealing well.

As you may have surmised, it’s about this:

And then I was just…peeing.

“Urge incontinence”. Only…there’s no “urge” part anymore. It’s closer to say that it will occur to me that I haven’t peed for awhile and should prolly do that, or I kind of have to go, and then before I can get to the toilet, I am just peeing. Everywhere. I’ve had to leave work early because I had to change my clothes, I’ve had to change clothes I literally just put on. And it’s not like I’m peeing in my chair, oh no, it fucking WAITS until I am alllllllllmost to the toilet and then just lets itself out all over me and the bathmat in front of my toilet before I have the chance to undress, much less sit the fuck down. Unless I physically cross my legs to contain it – and often, even then – there’s a mess.

I’m 42 and I wear incontinence pads every day now. As I posted previously, a lot of the articles about ALS say that usually bladder and bowel function aren’t affected. I took a lot more comfort in that than I realized. Like..sure I might be choking on my own spit someday, but at least I won’t be sitting in a puddle of my own urine. But no, I’ve not even begun to have speech or swallowing problems yet, but I have left trails of pee from my room to the toilet – while WEARING a fucking pad. They only hold so much, and I’ve peed through even the overnight Poise pads more times than I can count.

Fun fact – Poise pads are rated by flow, just like menstrual pads, onle they don’t use words like “light, medium, and heavy”. They use words like “drips, dribbles, spurts, and gushes”.

Additional fun fact: menstrual pads and incontinence pads are NOT THE SAME THING. Ask me how I found out! At work!

So, last clinic, I brought this up, and we started the road to Figure Things Out. It has NOT been a good road.

Like, at all.

We started the easy path, with a medication. That did nothing. We upped the dose. Nothing. I was referred to a urologist. He had me pee in a cup to make sure I didn’t have any weird infections – this is not easy any more. You kinda need functioning hands to maneuver this, and remember this point. It becomes VERY important later. He then did an ultrasound on my bladder to make sure I was emptying it completely when I peed. I do. He shrugged and gave me samples for a new med to try. I did. They did nothing. He gave me another months’ supply in samples, and said he was previously going to do a couple of tests that day, but given my whole situation, he instead referred me to his colleague, who could do an ENTIRE workup. He said they’d call to schedule that; it’s an hour and a half appointment that involved probes and a scope up my urethra, soooooo be prepared for that I guess.

A week later, I get a call to make the appointment, and they send me a pamphlet of what to expect, and a sheet of instructions on how to prepare. The word “enema” is involved. Two enemas, exactly. One the night before, and one the morning of. The informational pamphlet says they’ll be sticking a scope into my bladder, to take a look, they’ll also be doing a flow test which means I sit on a commode and pee to determine…something, I guess. How fast I pee? And then they’ll be filling my bladder with sterile saline and stick a probe in both ends, and then have me do some tests like bearing down, and standing up. I guessed there would be puppy pads all over the room for that part. I was not looking forward to this, like, at ALL.

And so, the weekend before the appointment, I had to muster the courage to ask J to take me to the store so I could buy a freakin’ enema. He’s actually been amazing about listening to the really awful details of this whole bullshit Godzilla Disease, and took it in stride, and sympathized about the scope part cause he’d had that done. We bought what I needed, and then the night before the appointment, I set forth to do the thing.

OK. Here is where it is important to remember the part about “you kinda need functioning hands”. If you’re not familiar with an enema, it is essentially a flexible little bottle of saline with a thoughtfully, pre-lubricated plastic tip. You insert the thoughtfully pre-lubricated tip into your butt, squeeze the contents of the bottle in, and then wait for nature to do its thing. The bottle, for reference, is smaller than a standard soda bottle by a lot. It’s also full of water, which is heavy. Sooooooo don’t actually picture this, because gross, but…entertain a brief thought about what kind of difficulties a person with ALS may have in this situation. Especially when she is also overweight, and seated on a narrow, raised toilet seat with bars that prevent her from say, separating the knees as far as one might wish to get access to that business.

If your imagined, hypothetical scenario included dropping the bottle in the toilet more than once, and then ultimately only managing to squeeze maybe a third of it in? Congratulations. Now do that again in the morning.

The night before the appointment, after dealing with the ahem..effects..of the ordeal, I have a worrying thought. The clinic has more than one urology office location. There’s the one at the hospital in NW Portland, where I’ve been seeing this dude, but they ALSO have a location in NE Portland, where Dr. Goslin is. The urologist just mentioned a colleague. Same office? I scoured the paperwork I had, nothing had an address on it. It was Monday night at 10. I couldn’t call anyone. I checked the web portal for the clinic, and they had NOTHING about upcoming appointments anywhere. I could check every fucking thing else in my medical files with them, but nothing about an upcoming appointment. They hadn’t called with an appointment reminder.

I took my chances and went to the same clinic. And…yeah, you already guessed it was the wrong fucking hospital. Amazingly, they had another opening at the right hospital the very next week, so I made that appointment. After the month I’d been having, and the whole enema ordeal and the humiliation of that and the frustration of my hands just not fucking cooperating enough to do this, and the nightmare scenarios of thinking I’d ever have to ask someone for help with that, and paying $30 on a Lyft to the hospital and knowing I was going to have to spend another $30 to go home….I went into the hospital bathroom and sobbed a lot. Then I went home and took a nap.

The next week, I had better ideas about how to do the prep work. It went better, but also involved having to do the thing twice, since I could still only get a half dose in. The morning of, I had a complete incontinence issue and peed alllllllllll the fuck over m,y bedroom carpet and the bathroom tile and the bath mat and the toilet seat and everyfuckingwhere. And then after I cleaned it all up, I had to deal with the second dose of enema funtimes, and then got dressed and called my Lyft. It is 20 miles from my apartment to the hospital, mayyyyyybe 45 minutes with traffic. I left around 7:30 for an 8:30 appointment. There was a 25 minute traffic delay. I got to the hospital at 9AM. When I realized I was going to be 10 minutes late, to a 90 minute appointment, I thought about calling them to apologize but didn’t think I’d missed the appointment It was an hour and a half, and they always keep you waiting 10 minutes in the lobby anyway. When Waze bumped the arrival estimate to 8:45, I contemplated having him just turn around and take me back home. When the arrival time hit 9AM, I just kinda…turned off and knew I was showing up just to reschedule with the receptionist. I got to the office, explained what happened to the Eastern European lady, told her I realized at this point I was probably going to have to just reschedule the whole thing, and she looked at me like I was stupid.

“You have to PLAN for these things,” she told me like I was a child. “You can’t think traffic isn’t going to happen.”

“I planned a 15 minute buffer,” I told her. “It took 45 minutes longer than it should have.”

“You have to think about traffic,” she shook her head at me, exasperated. I guess she realized I was very, very close to tears, because then she said “I’ll see if they can get you in. But I don’t think so.”

Cue about 8 minutes of me leaning against the counter while she talked to the other office folk about how I seriously expected to be able to show up 30 minutes late and then a muffled conversation around the corner with the nurses, and I was JUST about to tap on the glass and remind her snarky bitch ass that I had ACTUALLY apologized and asked to fucking reschedule in the first place when I GOT THERE when she came back and said they could do PART of the appointment today, and maybe if the next person doesn’t show up for their appointment, we could get it all done.

We did not, in fact, get it all done.

Wanna guess which part we did not get done? The part that required the enema prep? OH WELL DONE YOU GET A PRIZE. We DID get the part done where they put numbing gel in my ladybits and then jammed a camera scope in there. I got to see the inside of my apparently healthy bladder, and even watched my kidney spit a blurble of pee into it. I did the pee-over-a-cup-on-a-scale test, too, and then sat in the room alone with no underwear on while we waited to see if the next guy showed up. When he did, I was ushered out to the lobby to reschedule without being given a chance to put said underwear back on, and then stood at the counter with a breeze up my dress while I waited for Ms. Thing to get me another appointment. At least she was equal opportunity bitch, because another dude came out of the office and needed some followup something, and she barked at him to just sit down and she would get to him in a minute. And then told me that she just couldn’t STAND when people just HOVERED like that. And then she tried to be sweet and called me darling when she found an appointment a month away “so much quicker than I thought for you” and made a point of scheduling me for the LATER time, and wrote my appointment time as 15 minutes earlier for arrival on the reminder card. Like…yeah, I GOT it, bitch. I WAS LATE. And then I went outside and got a Lyft home that cost $40, like the ride in, and I guess the worst part is how everyone assumes I have a magical support network for free that can help with enemas and free rides where I need to go so it’s just an inconvenience to THEIR asses when I get caught in traffic or they send me to the wrong fucking hospital in the first place.

Oh, and this was on Halloween.

So now, I get to wait a month, do enemas again, and in the meantime just continue peeing myself all the time because it’s not at all disruptive to my life? And then pay another $80 in Lyft fare to have probes shoved in me? And in the meantime, the urologist’s advice was to do some Kegels. IF I COULD CLENCH THOSE MUSCLES IN THE FIRST PLACE, LADY, WE WOULD NOT BE TALKING TODAY. DO YOU KNOW WHAT THE FUCK ALS EVEN IS. It’s when you try to use a muscle and CAN’T. BECAUSE THE MUSCLE IS GONE.

So yep. I’ve not been living my best life lately. This has been really hard. And humiliating. And a big fucking mess. In every sense of the word.

Next time I’ll tell you about clinic day and all that. This was a difficult post to write. I’m going to go look at some cat pictures or watch some jellyfish for awhile.










Cry Me a River of Lava

tragerstreit1 Comment

I had a 3AM epiphany after watching one of many, many, many nature shows. I’ve been on a Carl Sagan and Brian Cox kick lately, having completely exhausted all things Sir Attenborough. My mind latched on to the idea and wrestled with it rather than letting me sleep: people are like volcanoes.

No wait, stick with me.

Our outer shell is a hard rocky thing, but internal emotions are a seething, writhing mass of potentially deadly stuff. Some people bottle that up and become a tall cold stately thing, very impressive to look at but not all that interesting. Some people let emotions seep out all over the place until they are thin, flat, and stretched out to a similar on interestingness. Most of us though, keep it bottled in until it can’t be bottled anymore, and there’s an explosion. Sometimes there are signs for months or even years before the event that an impending irruption is eminent; irritability, depression, reclusiveness the equivalents of smoke and the occasional ash plume. Sometimes the eruption is sudden and violent, and nothing around it is ever the same. And once the eruption is over, we may become a stark hellscape of stripped trees, chartered earth, and acrid air. Or, we may become an amazingly fertile landscape of lush vegetation, the ash of emotional eruption fertilizing our lives afterwards. We can either be scarred by the experience, or renewed by it. And we can, if we are lucky, even use that emotional lava to build something new.

I suppose I saw it coming for weeks, this latest eruption. I had a serious bout with Sadbrain, to the point last Wednesday while having dinner with J, he repeatedly asked me if I was okay, because I clearly wasn’t. I didn’t know what to tell him. Of course I wasn’t. I’m never going to be “okay”, not ever again, but I can be okay with what’s happening. Occasionally. Right now, in this moment. Naturally sometimes are going to be rougher than ours, of course they are, but Sadbrain is another beast entirely. It’s born of, but not entirely created by, current events of course, but there is an insidious undercurrent of malignant chemistry in the mix to make things even worse.

He and I had had a chat about suicidal ideation lately, I don’t even remember how it came about. I told him I’ve never been properly suicidal, never really wanted to commit suicide, to which he immediately scoffed. I corrected myself that of course I’ve thought about suicide, everyone does, even if only in a sort of philosophical way. But I’ve never actually thought about killing myself. “I don’t want to kill myself,” I told him, “but …sometimes I just don’t want to be alive anymore.” Being alive is hard, and often it would be so much easier to just …not. I don’t have the impetus or the energy to actually end my life, and I would never want to, but I can’t help sometimes to just… not want to exist.

And, this is the space I was in. Everything seemed unnecessarily difficult. My job had thrown a bit of a curveball at me, physically of course things are continuing to decline, there was drama with my cat, bad things happening to the people I love, horrors occurring daily in the world which I keep failing to protect myself from hearing about, and my continued search for a living situation is so desperately difficult it deserves its own post. Which, I may or may not get up the emotional fortitude to create some day. And so, two days ago, I completely erupted.

I was working from home that day. I had a role-playing game session that night planned with my friends, and was kind of freaking out about just not wanting to deal with the outside world. Not that I didn’t want to see my friends, and it’s not that I didn’t want to play, but that the concept of existing I any capacity in the outside world seemed untenable. Jay gave me an opportunity to decline to go, but of course my social anxiety and sad brain told me that if I couldn’t even manage to go out and have fun, then I was truly worthless. I was determined to make myself go out, even if I didn’t feel like it. I was watching Cosmos with Carl Sagan while I worked that day and I listened to Sagan talk about our thousands of nuclear bombs and how one of them is the equivalent destructive force of the entirety of the destructive force of all the bombs used in WW2. And then he wistfully pondered how we could wipe out the entire world population in the space of “a lazy afternoon” instead of one small corner of the world over 6 years and I just …totally lost my shit and started bawling.

Completely erupted.

The next 30 to 40 minutes were spent sobbing like a heartbroken thing, wailing into my hands, hyperventilating, or staring at a space on the wall with tears spilling down my cheeks. I can’t even articulate why I was crying, or what I thought it would help to rub the scratchy hand towel into my face until it hurt instead of blowing my nose, or why it just seems natural to rock my body back and forth or hold my fists in front of me and just shake, but that’s what I did. For almost an hour. There was no one sore spot, no one trigger, just that everything was terrible and I was broken and I wanted more than anything to just… Not have to exist.

Needless to say, I did not go to game that night.

Instead I took more than my usual dose of Ativan, put on a nature show that had not a shred of social commentary in it, cuddled the hell out of my cats, and eventually tried to sleep. Eventually I succeeded. I guess that’s one blissful thing about mental and emotional breakdowns, they leave you so completely exhausted that it’s easier to get to sleep.

I feel that this particular eruption is not quite over, there’s still a little hiccups that keep happening. I came across an image today, posted below, and I kind of lost it again. Just for a minute. Molly woke me up at 5 AM this morning to be petted, and I’m probably projecting but she seemed frustrated that I can’t quite had her properly anymore. And this is the first post I’ve ever cried while dictating. Sad brain has a lot to do with this, but of course there are legitimate underlying reasons for all of my distress definite geological pressures to go with the mystical phases of the moon and planets aligning just right. I wish I knew what drugs to take, how many virgins to sacrifice, to prevent these eruptions from happening again, but I know they’re going to. For as long as I am physically able to draw breath, and think, and feel. All I can really do is monitor the seismic activity of my emotional state and declare a state of emergency when I feel interruption is pending. And do my best to mitigate the damage when these eruptions are sudden severe, and catastrophic.

And try my damnedest to make sure this results in a verdant forest instead of a hellscape.

http://thelatestkate.tumblr.com/










Bruising for a Cruising

tragerstreit1 Comment

Okay, I have to tell you about this stupid thing that happened, because then I can focus on the good parts, and also tell you something good that came of it all.

TL;DR: ALS RUINS EVERYTHING EXCEPT MAYBE DRAMATIC ENTRANCES.

So, I went on a cruise. I’d arbitrarily decided I wanted to do that, last year, as a bucket list thing. Cruises seemed cool, and at the time I was envisioning myself spending a week on the ocean, cruising to Alaska, taking the time to mentally collect myself and write all of my goodbye letters and look at the water. My friend Beth has been trying to get me to go on this one geeky cruise, but it was in Mexico and I’m not a tropical person. At all. And then, well, my hands stopped working so well, so it was less important that I have all the alone time, and then the geek cruise announced that Zoe Keating was going to be one of the performers and suddenly I am going on that fucking cruise, you’d better believe it.

It’s this one: https://jococruise.com/

One week of music and comedy and geekery. Puce, Lance, and Tam came with me, and we were gonna have a hell of a time and I was going to work up the nerve to say hello and thank you to Zoe Keating, and I was going to look at the water for hours and maybe have a cocktail and perhaps see a whale. And I did all those things and so so so many more. It was incredible.

…Except for this one thing.

From the start, I had concerns about accessibility. I can’t do without the walker, these days. I use a cane to get from the car to the grocery store where I can use a cart to lean on, or I’m using my walker. I wasn’t terribly concerned about the ship itself, though, I mean, these things are practically built for old people, right? I had a quick look at the cabin floor plan and realized with one week to go until the cruise that the bathroom was not even a little bit accessible. I sent a very apologetic and frantic email to the amazing planner people, who totally came through and switched me to an accessible cabin with grab bars and everything and it was all saved and glorious! (HOORAY FOR THO) ..Except for the shore excursions, I was still wary of them. Now, I realize fully well that the A in ADA is for Americans, and the rest of the world is not exactly accessible, which is why I’ve become reluctant to do a lot of traveling. But I completely intended to make do, so long as they could get me to shore, which they promised they could. And I tentatively believed them and didn’t worry about it at all until the day before the first one.

We were going to stop for the most of a day in Cabo. Unfortunately, there was a thing on the ship I wanted to do, right in the middle of the day, so we stopped by the front desk to ask how the disembarking would go down, to see if the hassle was going to be worth it for just a couple of hours. The town was too small to dock in, so they were offloading people by tender, which is a small boat, the woman with a delightful German accent explained. There wasn’t a rail, and there was a small gap between the ship and the tender that would wobble with the waves. Due to liability issues, they could not carry me in, but there were people on both sides to give me a hand. She assured me it would probably be fine. I had my doubts.

We skipped Cabo, and the event I wanted to go to was postponed til Friday, so I wound up spending the whole day on the ship, drinking fake mojitos and staring at the water and having a nap. SO HORRIBLE, YOU GUYS, SUCH MISERY WOW. CRUISES ARE THE WORST. The next day was Loreto, though, and not only a local food festival but an all night concert (Ted Leo will indeed rock your face off, so there was no way I was missing that). I vowed to get my ass ashore and do some sightseeing come Hell or high water – and yes the irony of that is not at all lost on me. The morning came, and so did my apprehension. Again, too small to dock so we were using tenders to get ashore. Lance went to the launch site to see how hard it would be to get me on the boat, and he assured me that it was a little gap, the water was calm, easy-peasy. They’d be there the whole time to help, and I knew they absolutely would. It wound up truly not being that difficult, even though I can’t step up a curb anymore, just a little gap and a lot of helping hands. HOORAY FOR THAT.

The ride to the port was nausea inducing, and the dock we wound up in was basically a narrow-ass pier maybe five feet wide, and then a steep as shit ramp to get up to the port. We had to step down from the tender using two wooden boxes made into stairs and yeah, you THINK you already know where this is going, but NO. I made it down the steps just fine with a lot of help from the crew and my friends, and walked across the narrow pier with no problems, and up the steep ramp without falling. You doubters. We made it to the city and looked around; it took forever for me because hey! No proper sidewalks and steep hills and cobblestone streets! Lance and Tam split off from Puce and I to do some shopping, while we looked at an ancient mission church and its museum of artifacts.

And then shit went sideways…literally. Without going into detail, I fell out of the walker and skinned the bejeesus out of my knees. As usual, the worst part was the strangers. It was right in the middle of the road, in front of a restaurant, so everybody and their mother pretended not to be watching but still managed to stare as we tried to get me up. A well meaning couple helped Puce out, and then overstayed their thanks by over-analyzing why I fell and how to prevent it from ever happening again while Puce and I both repeated YES THANK YOU and tried to move the fuck on with our lives. We limped to an ice cream shop, where I ate delicious ice cream from my childhood while trying to forget that it happened. Remarkably, my tights weren’t ruined, it turned out. Hooray! The day was not completely obliterated, but we agreed it should probably be a short day.

We did the food festival, delicious! and then stayed for the first act when the concert started. We decided to head back to the ship while there was still light to see. I was pretty wiped out by this point, but luckily there were taxis provided by the cruise organizers to get me back to the pier. And….again, I know what ADA stands for, but the van that showed up had a wheelchair symbol on it and yet was the most un-accessible van ever. He helpfully provided a little stepstool for me to get up into the seat with…which was a complete waste of effort because I don’t have the strength to lift my foot up that high to get ON the stool, much less step up with it into the the van. I managed, but it was not pretty and my tights were falling off by the time I was onboard. I discreetly hitched them back up when we got to the dock, I walked so, so carefully down that steep-ass ramp, navigated the narrow pier to the boat…

..and swore a lot because I’d completely forgotten about the fucking steps up to the boat.

Now, I can do a couple of steps if there is a sold handrail, because it’s basically using my arms to haul myself up. Without a hand rail, though, it’s fucking impossible. I quailed, but Puce assured me we would get this done. The diminutive crew took my walker on board, and then I slung my arm over Puce’s shoulder to try the steps. It failed instantly, and completely. I couldn’t help him get me up at all; I couldn’t lift my foot even, on to the first step. The crew tried to help, but they were small Asiatic men trying to assist a fat American giantess, and they were completely ineffective beside grabbing me under my arms and trying to put my feet on the stairs as though the only problem was getting my foot to touch the step. I asked to be allowed to sit for a moment, to catch my breath and rethink the problem. It took them all too much time to understand, this isn’t working, let me go.

I looked around, trying to think of a plan, and not allow myself to become a quivering, humiliated mass of tears. I noticed a line of people behind us and tried not to look at their faces. I noticed a cute girl with pink hair watching, similarly trying to think how to help. And then I noticed Anne Wheaton, one of the cruise’s celebrity guests. You probably would know her best as Wil Wheaton(the kid from Star Trek)’s wife, but she’s a geek in her own right and a fellow believer in the amazing power of googly eyes (for real though, google VandalEyes; the woman is one of my heroes) and was on the cruise doing a reading from her upcoming book. And she was watching me struggle with these ghetto-ass stairs on this unstable-ass boat and these little dudes hurting me while trying to help and I really, truly, just wanted to slip into the water and never come up. But that wasn’t an option.

I had just decided that the easiest thing would be to haul myself on to the boat and crawl over to the bench on my skinned knees like a fucking animal because surely my dignity could only suffer more if I managed to piss myself as well. That’s when the pink haired woman stood up and offered to help, assuring me that she was quite strong. I waved her off once, announcing that it was probably easier if I just crawled, but she repeated her claim of strength and voluntold another man to help her and Puce pick me up. I accepted with as much grace as I could pretend to have. Carrying 230 pounds of dead weight up what are effectively rickety fruit crates and on to a narrow moving boat is not an easy task. I think 8 people at one time were helping me, swiveling me successfully into a bench, and I tried to crawl inside my own skin as everyone else filed on board. Puce was amazingly supportive as always, and silently offered support while we rode back to the ship as I silently prayed for everyone to please forget this whole thing, and did my best to not completely lose my shit until I was alone. The pink haired cutie stayed behind to make sure I was able to get off the tender okay, and of course I could as there were no stairs involved. I thanked her a dozen times, we got back to our cabin, and I cried a lot.

I spent the rest of the cruise fervently pretending that the whole thing hadn’t happened. I had bruises under both my arms, my ego was shattered, but goddammit I had a good time for the rest of the trip pretending I hadn’t made a complete spectacle of myself in front of a boat full of strangers and Anne Wheaton. I mentally chalked it up as a lame-ass claim to fame and joked internally that she’d probably never forget the trip, for damn sure. And managed to forget it, mostly, specially when I got home. I knew I’d probably blog about it, but hopefully in a not-depressing way and try to find some positive angle on the whole ordeal, cause that’s how I fucking roll.

I’m off work for sabbatical now, so I slept late Monday. When I woke up, Puce asked me if I’d been on Facebook yet. That’s…never a good sign. I told him no, mentally wondering who died. He said I should check, and I got nervous and asked what was up. He asked if I wanted to find out myself, or should he tell me, and I didn’t feel like sorting through a time bomb of a timeline, and maybe Facebook’s stupid algorithms wouldn’t even decide to show me what he was talking about at all, anyway. I told him to tell me.

“So…………Will Wheaton’s wife posted to the JoCo Sea Monkey 2017 group about your…incident. It’s very nice, and sweet, and depressing…but she still posted about it, basically to give you support.”

FFFFFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUCCCCCCCCCCCCCCK.

“Then Beth went and tagged you in comments.”

FFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUU

OK. Breathe. It’s cool. No big deal. It’s cool. Public humiliation part two. OH MY GOD THIS IS NEVER GOING TO GO AWAY IS IT. I braced myself for the worst and checked the group. And the post was obvious.

“To the young Sea Monkey who was using a walker on the cruise-”

Wincing, I read her account of the incident, mortified that my emotions were so transparent and I was completely casting a shadow on what should have been an awesome night. I hate that my disease is depressing as hell to everyone around me. I try to keep my shit in check for this reason alone. “What I wanted to do was get up and come over to you to tell you not to feel stupid for your body failing you, but it’s not my place to tell you how to feel,” she wrote.

..Holy fuck, this woman gets it, I thought in surprise. Being told not to feel dumb or weak or sad is never helpful. It makes me angry, if anything. And she understood, and elected not to intrude on my struggle like some Feel Good Fairy Godmother with useless words of non-comfort. I wanted to hug her for that. She continued to tell me that she noticed that not one person behind us waiting to get on the boat was irritated or impatient, just standing by not knowing how to help. And..I was relieved. And instantly didn’t mind at all that she posted this story semi-publicly. Was grateful, even. Because of course my brain told me that everyone was watching, feeling sorry or being mad that I was Officially Ruining Everything. She understood how I felt enough to make a point to tell me this. Which was amazing. She gracefully relieved me of any obligation to respond or identify myself, and concluded:

“Just remember, you are not your body. You are an incredible human being facing a really shitty situation who chose to go on a cruise and live life to the fullest. You are an example of perseverance we should all be so lucky to witness.”

I’m…not entirely sure that’s so, of course. I’m just some dumb girl with a fucking ridiculous disease that ruins everything. I didn’t really decide to go despite my disease. Zoe was gonna be there and thus, so was I. The end. But Anne’s words were amazing and timely as shit and I felt immediately better about the whole thing, and I replied with a simple thanks on the post but sent her a more detailed reply in a Facebook message, including a request to pass my thanks to her pink-haired rescue goddess friend who was indeed super strong. She told me why it hit her so hard, and hoped I’d be back next year. I told her I’d like that, but maybe I’d skip the port of call next time (heh), and asked if I could use her words when I inevitably posted about this whole thing. She said okay and she’d be sure to pass on my regards.

And now I have. So, a super shitty thing happened, but as usual, there was a moment of grace in it that gives the incident some worth. I’m only sorry I didn’t get to hear this from her in person so I could hug her. And then show her the googly eyes on my JoCo badge.










I’m still alive.

tragerstreit2 Comments

I have a lot to say, but not a lot of it is good, so I tend to not want to talk about it. Some days just suck. I’ve been in a state of..depression is not quite right, more like barely contained terrified panic, since the election. It just keeps getting worse. Thank you, everyone who voted Republican, for voting to repeal the Affordable Care Act, so I’m not entirely certain I’m going to have medical coverage when I’m forced to leave my job, because I have one hell of a pre-existing condition.

I had clinic recently, not much to report. Same decline, my hands are getting worse, swallowing and breathing are still normal.

My 23 year old cat is dying, and I feel like I want to, too, when I think about it. I’ve known him for more than half my life.

Christmas was…good and bad. I’ve had more falls lately.

That’s the baby update. There will be more; I have a lot to say and I promise to say it soon.










Dealing with (cat) Shit

tragerstreitLeave a comment

I suck at asking for help.

I know, you all are alerting the media right now. OH MY GOD REALLY!? DID YOU ALSO KNOW THAT WATER IS WET? IT IS TRUE!!

I’m getting better at it I swear. I will give the soda bottle one good try and then hand it over to someone for opening. I allowed friends to help with cleaning my apartment. I’ve brought jewelry out to the car on our way somewhere, for J to help me put it on rather than just not wearing it. I trust folks to help me up a curb without feeling like I’m going to pull us both down to the ground. It’s hard, and it’s definitely going to be a continuous work in progress until I no longer have the OPTION but to let people help, but there are definitely areas that I have a harder time with than others.

Like the cat box.

I don’t know why that’s such a trigger. Because it’s gross? Because my cats are not technically part of ME and so admitting I need help caring for them when they are not a medical necessity seems …frivolous? Even though I would literally rather die in a house full of shit than live without them? Because my cat Parmesan is 22 years old and shits wherever he wants and right now my front room is so absolutely goddamned GROSS that I am mortified at the thought of someone else having to deal with it?

But I have to.

I got a notice of inspection when I came home Tuesday; they’re coming in to check the fire alarms. No big deal. But yesterday I had to clean the cat box area, because that’s the first thing you see (and smell) when you come in to my apartment, and it needed doing. I’ve got puppy pads spread out all over my dining area, because Parmesan does what he wants and I can’t stop him and I love him enough that it’s a price I will pay for his company. The carpet is …unhappy with its lot in life, at this point. And that’s a fair part of why I had laminate floors in my house, because once a cat pees on something it is RUINED FOREVER. AND EVER. Cat owners know this. No amount of Nature’s Miracle will ever completely get rid of the smell. And so I just lay out the puppy pads so that hopefully Parm pees on them and then Ianto will NOT try to bury it and drag them all over the place trying to scratch over it, exposing the carpet where Parm will inevitably pee again. J steam cleaned the carpet not long ago, but it needs doing again. Until then, the spotbot and puppy pads will have to do. It’s not easy for me to do this, because I can’t just bend down to pick up the soiled pads, and crouch down to scoop the box. I have to get on the floor, which is less like “getting down on the floor” and more like “a controlled fall”. Then, pulling out the tray from the litter robot (SERIOUSLY BEST THING EVER), replacing the bag, collect all the pads, put out new ones, scoop out the other box, somehow get up off the floor, heft the heavy bag of used litter into the trash can, and then put it outside.

It didn’t used to be a huge production. Twenty minutes, tops.

Last night demonstrated that I can’t do this anymore. I couldn’t carry the water tanks for the spotbot without dropping them. I couldn’t effectively scoop out the boxes. I had the worst time opening and levering a box of cat litter to refresh the boxes. My hands wouldn’t uncurl after grasping the puppy pads. I had to use two hands to spread them out instead of the casual flick it used to take. I almost was unable to get off the floor when I was done, and I was out of breath and dripping sweat.

I can’t do this anymore.

I had a really, really hard time telling myself this last night, as I cleaned myself up and waited to stop sweating. And I don’t know why I’m so stubborn about this, but it seemed like it was the end of all things. I know it’s not. I’ve had friends volunteer, cheerfully, to come over and help with the cat boxes. It just seems like a special brand of failure, to no longer be able to do this. When I adopted my cats, I promised to love them for all time, and to be responsible for their care. I feel like I’m failing them at it. I am losing the ability to give them head skritches, to play with them, and to give them a sanitary place to do their thing. And it’s the worst. I am failing at Cat Mom, and it bothers the fuck out of me.

I’m not dealing gracefully with this at all.










The Week in ALS…

tragerstreit2 Comments

This should probably be a vlog post, but I don’t feel like putting on makeup and sitting in my hot office to record one, so you get a micropost update.

So to sum up:

1) The orthotics appointment for testing various knee braces was stressful and awful. Traffic was horrifying – it took us literally an hour and fifteen minutes to drive a 35 minute distance. When I called to give them a heads-up, she was AWFUL and rude to me, “Well HOW late.” “I don’t really know, maybe five to ten minutes?” “Well where ARE you.” “Two exits away, but traffic is unpredictable.” “I’m going to check with the doctor and make sure that he even has time for you.” I was literally ON the exit when she came back and told me I’d have to reschedule because they really needed EVERY MINUTE of my appointment time to work with me. “How about this. I’m on my way in RIGHT NOW. If I show up too late, I’ll reschedule in person.” When I showed up seven minutes late, they cheerfully had me fill out the paperwork and wait in the office lobby for five minutes. So I guess I’m not allowed to be late, but they can delay all they want.

And then, they had me try on a brace that didn’t help at all, made walking even NOISIER, and when I tried to take them off, I had to shove the velcro between my palms and push them hard together while I pulled at the strap in order to get them unhooked, because my hand strength wasn’t enough. And then they told me that anything sturdier would make sitting and standing nearly impossible, so they have nothing that can help me.

2) Dr. Goslin called and then emailed me yesterday (because I didn’t answer the phone) to tell me that I was disqualified for the new research trial. I did not take it very well; about as hard as I took the initial diagnosis, actually, because it felt like hope for SOME good to come out of this had been pulled out from under me. Again. I spent the entire day sleeping.

3) I woke up this morning still in a funk, and while getting ready for work, I had a fall. Just, knees gave out while I was coming out of the bathroom, and I landed very solidly on the linoleum on my knees like I’d just had a religious revelation. It hurt a LOT, and I resisted crying, but let myself just lay in the bathroom doorway for a little bit while Ianto very nervously sniffed me. Falling and getting up while wearing my braces makes everything suck worse, because it holds my ankles in a fixed and uncomfortable angle while I’m crawling. Usually when I fall at home, the first thing I do is yank my boots off if I’m wearing them, to make getting up easier. But I was already running late.

So, it’s been a terrible week on the ALS front. This is not to say the week has been terrible; I saw my favorite radio play live, with some of my very favorite people, had an awesome Saturday showing off Portland to a friend I hardly ever get to see because she lives far away, and my elderly cat is actually recovering quite well from his sickness. So yay for all those things. Yay.

And now you are updated!










Too private.

tragerstreitLeave a comment

“I tend to be pretty private,” she told me, as we talked of grief.

“I keep that close to my chest, usually, too,” I agreed.

“But you’re pretty open, usually? You have that blog.”

“I post a lot of things people would consider private and personal, sure. But when I get really sad about my own situation, I tend to shut up and not post for awhile.”

++++++++++++++++++++++++++++++++++++++++++++++++++

So I haven’t posted for awhile. Not that things haven’t been happening. Things being thought, that I ought to write down. Feelings to document, frustrations to record. Things. But it’s hard to write, when you feel bad. There’s a bullshit self-imposed rule of “if you can’t say anything nice”, when the whole POINT of this was to record the good and bad. The funny among the fucked up, the grace between the grief, the other alliterative things that mean shit happens and sometimes it sucks and it’s all valid and okay.

There’s been a vast lack of energy, both physical and spiritual, lately. I spent the entire weekend in bed. Sleeping or playing video games. Safe to say I’m in a depressive streak, and things are hard right now, but good stuff still happens. I have a lot in my brain. Work is stressful as shit, and that’s its own post, one of many that I feel I owe you, this place, this blog, my future self. One of many. It’s harder to type and that makes me not want to do it. I am tired. I am lazy. I would rather be escaping into virtual realms, the Commonwealth, the biome I call my Minecraft home, Discworld, anywhere but here. I am squandering the time I have left and the ability I have to do things with it, and I can’t bring myself to care, most days.

But I have things to tell you. And I shall. I’m sorry to myself, and to whatever audience here, and to the universe in general for not being a diligent reporter, for not allowing myself permission to post even the bad days, when the bad days aren’t funny. It’s just easier to sleep, instead.

I have things to tell you. And I shall.










Saddiversary

tragerstreit3 Comments

*cough* Hi. Um. *taps mic* is this thing still on?

Yeah. Sorry guys. It’s been very nearly a month. I haven’t had much to report, for the most part, and I FREELY admit that I was hiding from everything on April 1st. Diagnosis Day. My second Saddiversary.

Two years ago, I sat in Dr. Goslin’s office and stared at the carpet, nodding slowly, repeating the words, “definitely a motor neuron disease of some kind, and very likely ALS.”

“In a nutshell,” she’d replied.

At the time, my hands were unaffected. I could still stand up without assistance, and walk unaided. I couldn’t stand on my toes, but I could stand on one leg. My breathing was fine, speech was fine. I had periodic muscle twitches, mostly in my thighs, and sometimes harsh cramps in my calves. I could still slowly wiggle my toes, though my mutant ability to wiggle my left pinky toe was gone. I weighed 175 pounds, up from the 160 I’d finally managed to hit when all these troubles started.

I was devastated, of course. No shit, right? But I had a fierce optimism about it all. It didn’t really matter, I knew to my core that I’d be okay; it’s just that OK was going to gain a new definition. Someone else’s broken and busted is someone else’s awesome mobility day. I had amazing people at my back, I had a NAME at last for what was wrong with me,and with that name came a roadmap. As long as I have a name, I can have a loose plan. With good people on my team, and a discovery of a whole organization of people dedicated to help poor bastards like me cope as best as we can for as long as I can, I had this thing in my pocket.

Two years have come and gone, and they’ve taken my ability to stand without assistance. They took my ability to stand on my own without leaning against something. They pretty well chewed up my hands by now. I’m losing the ability to wiggle my fingers independently, which KILLS the joke when I try to make sarcastic air quotes. I no longer type as fast. I no longer fit in my cutest clothes, because I’m now 200 pounds. Still eating and breathing fine, though, so again – the things that will eventually kill me have not yet begun to kill me. They took their toll on my energy levels, which is the second worst part of all of this I think. I can cope with being able to type with difficulty, I can cope with relying on a cane to get around, but doing any of these things just completely WRECK my energy levels for the rest of the day and probably the day after. It’s getting hard to get out of bed both because my energy levels say no, and part because hauling my now 220 pound ass out of the bed is not an easy task. Specially with a cat who just will NOT GET OFF OF YOU but he’s 22 so I have to be super nice and NOT toss him across the room. I fall sometimes, occasionally because I forget I’m not a normal person and can’t multitask walking AND adjusting my backpack. My cats are three obstacle course experts, and they drag their toy obstacles in new configurations every day. To keep me on my toes. Except the little fuckers don’t seem to get that I can no longer stand on my toes, and if I fall, we are ALL gonna regret it.

Those two years have seen some relationship changes, too. Surprisingly, mostly for the better. Amazing people have come out of the woodwork to support me, I hear stories about me that I never would have known, heard the effect I’ve had on people that I never realized. That part’s been awesome. And some people have gone, for many different reasons, mostly that it’s just really fucking HARD to be around someone with a terminal disease. You know the relationship is doomed. It’s difficult to watch someone you care deeply about struggle so much. And THAT is the worst part of having ALS. Watching how it affects those I love.

I watch you watch me struggle, and I feel your helplessness coil off of you in tentacles that hover and sway as you debate coming forward to ask me to let you help. I watch panic burst from your chest like a gunshot wound when you witness me fall, and you bleed in little droplets of ‘what do I do what do I do’ while I assure you that I’m okay, and scan my surroundings for ways to get myself up. You do a little “I wanna step in and help but I don’t know how” cha cha at my side, tentatively reaching down with those useless tentacles, hands offered but of no use to me. “Unless you can deadlift 200 pounds,” I warn, “you’re not going to be any help to me.” I can’t help you help me, you see. It’s not simply a matter of grab my hands and help me to my feet; there are no longer muscles to flex and bend and counter my weight. Getting off the ground is a matter of leverage, I have to find a solid footing and something sturdy and tall like a chair that I can use to wedge my legs into straight lines, and then lift myself off of the chair. My legs are stilts, made of useless skin and fat; the muscles are out back protesting. And so here we are in an incredibly awkward situation in which not only did you have to witness gravity force itself on someone you like, being able to do nothing, but now you have to watch as I humiliate myself by exerting an insane amount of energy to belly up to the chair and lock my legs in position behind me, shakily lifting my body upright, hissing to myself “come the fuck onnnnnnnn just stand up. STAND UP.” and when I get up, swaying and panting,k we are all of us worse for the experience. My humiliation and out of breath sweating will stop, though. You, you never really stop feeling helpless. And I see that knot of internal pressure, maybe it’s rage at the unfairness of the situation, maybe it’s fear that something might happen to you. You have a lot of reasons. Just as I do, watching my friends in situations I can’t control. It’s the worst place to be, and I don’t blame people for realizing they can’t handle it and stop coming around.

Hell, I actually respect you for recognizing your limits and putting your own health and life first. I WANT that for you guys. I appreciate everything you do, and I love you for who you are, and that includes knowing your boundaries, setting them, and keeping them. It’s hard to make those decisions. And keep them.

I’ve..lost track of where this post was going. It’s been two years of actual factual ALS. Life proceeds, as it always does, and so many things have become the new OK. Humans are amazingly adaptable, and I’m still having enough good days to make sticking around worth it. Having the world’s best excuse for not getting out of bed at ALL on a Sunday, nested in cats and blankets, playing video games with no guilt. It’s a recovery day/I woke up with no mana/I just don’t want to Adult today and this “I’m Dying” card says I don’ t have to. Having amazing friends who will bring me dinner, to my bed, because I don’t want to expend the energy to dislodge the cats, pull back the fortress of blankets and pillows, wriggle out of bed, and wall surf to the front door to meet you. And I’m not even dressed.

So that’s pretty much what I did on April Fool Day. Poisson d’Avril. Diagnosis Day. Saddiversary 2: Electric Boogaloo. I hid. And I cried, and I distracted myself with cats and video games, and slept a lot. And then it was okay. I’m still figuring out the new Normal, cause that keeps changing on me.

I really am sorry about being quiet. I do still have things to tell you, and things to show you. I was just being all Emo McCryface for a little bit. I hope you guys are having great days. I love all y’all.










And then I was just…peeing.

tragerstreit2 Comments

I wanted the title to be something more…dramatic/appropriate/somber, but Jack asked if that could be the title of my autobiography and I said no, but it COULD be the title of this post. So. This is a glamorous post, sure to make you fall madly in love with me.

Wednesday my body totally betrayed me. I mean, with ALS it does that as a matter of course, at all times. There have been FAR more instances of yelling at my legs to Do The Thing (including one total failure and forced sit-down while trying to get in to a car lately), and opening string cheese is becoming less of a struggle and more of a “forget it, I’ll get sscissors”. And now that I’m posting this, I’m realizing how awkward my typing is now. But Wednesday there was an Incident.

It started with a fall. I was cleaning up puppy pads because my elderly cat can’t stop peeing everywhere, and my little brother was coming over to steam clean my carpet for me. Balancing while operating a machine is no longer possible. So while scooping up the wet pads, my knees buckled and I just sat down. Wrenched my ankle a bit, still hurts. I was upset, but not crushed or anything, it happens. Justin the Wonder Brother came over, steam cleaned the office carpets and most of the dining room, and then ran the Spot Bot when Parmesan sauntered in and peed on the still-damp clean carpet.

Asshole cat.

The rest of the night proceeded without incident until I was ready for bed. I went to the kitchen to rinse out my cup and get more juice (see, Dietician? I’m drinking juice instead of soda with my evening pills like I promised!) and as I’m standing there with the water running, I just..start peeing. And I can’t stop.

Now, with ALS I was told soooometimes there is some ‘bladder urgency’ because of muscle spasms. And I’ve definitely experienced that – just all of a sudden YOU GOTS TA GO. And there’s been a couple of times I almost didn’t make it. But this was the first time I just completely lost control. I couldn’t do anything about it but stand there, fervently wishing it would stop, just hold it, just wait, the bathroom is LITERALLY ten steps away, but there was nothing. Just grab the roll of paper towels and wait it out.

And when it was over, I cleaned up the mess, took a shower, and bawled like a broken thing. Because one of the silver linings in all of this was the solace I took in the fact that people with ALS generally maintain bowel and bladder control. If I have to be trapped in a meat shell, at least I don’t have to be a meat shell sitting in a wet diaper. But then this, and I don’t know what to think, and I hope it’s an isolated incident, but it was jarring and scary and I spent alllllllllllllll day yesterday in a terrific funk that I’ve still not entirely shaken.

And then yesterday my nephew fell asleep and peed on my couch so I guess my house is just kinda a pee zone. Hooray for that.

Sorry I’ve not got something more lighthearted for you today. Sometimes with ALS that’s how it is. But I’m still mobile, still alive, still working. Still mostly happy. Still loving all of you.










But ya ARE, Blanche! You ARE in that chair!

tragerstreit1 Comment

Me versus life, some days.

The cruelest trick about old age and ALS alike is that you don’t know you can’t do something anymore, until you try and your body says HAHAHAH NOPE. I have a full list of things in my head that I probably should not do anymore, and every so often I say to hell with it and try anyway, and then inevitably said thing is moved firmly to the NOPE category.

It’s hard to even complain about this stuff, too, because inevitably I will say something like, “Well I found out for sure that I can’t crawl under desks at work to recable power cords anymore, cause it’s too hard to get up off the floor” and I guarantee it will be answered with “what the hell are you doing crawling around on the floor in the first place! Find someone to help you!”

And it’s not that I don’t want to, it’s not even an “I can’t admit I need help” thing, it’s just that sometimes I feel the need to push my own limits and find out for definite certain if I can still do X. Just to see. To know if I should even bother to make the attempt, in an emergency.

To wit: twice now I have needed to move fast to save someone from harm. Over a year ago, my nephew was riding his little plastic car in my house, he knocked into a piece of furniture, and it began to topple over on to him. I couldn’t move fast enough to prevent it falling, and fortunately it wedged itself against the wall first so I had time. Last night, my cat got caught in the handle of a paper bag and startled herself, which sent her tearing around my apartment with a paper bag around her neck. This might have been funny except that she was so terrified she was peeing the whole time, and the last time I had a cat do this, he managed to rip off his entire claw in panic. I could not even get up to begin to get to her, this time, and by the time I was up, she’d wedged herself in the corner under my couch. I pulled most of the bag off of her, but didn’t get the reinforced cord strap before she dashed off again. I sat on the couch a moment, looking at the little trail of pee all over the place, and was really upset that if she’d been in actual danger of choking, she’d be dead by the time I got to her.

I cleaned up the aftermath of Idiot Pee Hundred, calmed her the hell down after I found her huddled under the covers at the foot of my bed, and resolved no more handled bags lying around on the floor, whether they’re fun toys or not. And now I know that if this happens again, there’s REALLY nothing I can do about it. Cause ALS is a bitch.










Lalochezia

tragerstreit1 Comment

There’s something magical about swearing.

Lalochezia means relieving stress or pain through swearing. La-Lo-KEE-Zee-Uh. It derives from the Greek words for ‘speech’ (lalia) and defecation (chezo). It is literally Greek for ‘talking shit’. That, too, is magical.

If you’ve been paying attention, you know it’s not just a word, it’s a way of life for me. There are times that swearing IS appropriate, thank you. I’ve always used it to promote catharsis and relief when angry, sad, or stressed out. I swear casually too, but I wish I didn’t. My casual swearing isn’t nearly as profane as my lalocheziac screeds, but I would prefer to keep the swearing to important times. Overuse of the words diminish their power – a mouthbreathing stoner kid using the word ‘fuck’ doesn’t have nearly the same punch as say, a priest using it.

I’m sure you’ve known the relief. That day everything went wrong, your alarm didn’t go off, you missed the bus, you were late to work, the coffee was cold, you realized halfway through the day your underwear was on backwards, the printer jammed, they were out of your favorite thing in the vending machines, your boss griped at you for something out of your control, it suddenly started raining when you left work and you weren’t dressed for it; just, a thousand and one small insults piled up on top of each other all day. And then you got home, kicked off your shoes, grateful to be home and safe, and banged your toe on the couch which made you drop your mail all over the floor. All of the microfrustrations of the day exploded out of you in one vocal outburst.

I bet you didn’t say “darn it”.

There are times when it just isn’t enough to say, “she wasn’t very nice”. “Mannnn, FUCK her.” It doesn’t convey enough of your frustration with the problem to tell someone, “I couldn’t get the door open to get the cat out of the room before he barfed on the carpet”, but it works perfectly when you tell them, “I couldn’t get the fucking door open in time so the cat puked on everyfuckingthing.” And many times I am betting a mental FUUUUUUUUUUUUUUUUUUUUUUUUUUUUCK!!!!!!!! brought you a little relief.

And it really did! Studies have proven that swearing brings pain relief. Here’s one, from Scientific American. Mythbusters proved it. And here’s an article in Time that explains why it works best if you don’t normally swear a lot.

SCIENCE IS ON MY SIDE, BITCHES.

I’ve loved that there is a word for it. It delights me when there actually is a word or a term for that thing, like ‘esprit de l’escalier’ for the devastating comeback you think of after the argument’s already over or “semantic satiation” for when you see/hear a word so often it ceases to mean anything. Language is amazing, even if it’s foul. Sometimes, ESPECIALLY when it’s foul. I found out about the Greek meaning a handful of days ago, and was delighted all over again.

I felt a connection to that word, and specifically to what this site is. ALS:FTS has brought me vast relief through swearing about the things that suck, and proclaiming the things that don’t. I get very articulate and sweary when I’m angry, and babbling incomprehensibly when I’m happy, and honestly kind of boring when I’m neither of these things. I like lalochezia as a word, as a concept, and as a therapy. On a whim yesterday, I checked to see if lalochezia.com was available. It was. I toyed briefly with the idea of moving this blog over there, but a bunch of logistical reasons made me leave this alone. Like, domain redirecting and I’ve got cards printed with this URL and all of my email addresses and then what the hell do I do with gifhy.com? I’ve already got two other domains that are just old sites parked somewhere because I can’t bear to bring them down.

And then I had a thought. (It’s rare, but it occurs.) One minor complaint I’ve had about this site is that someone couldn’t freely share it because of the swearing. And I often get people self-editing themselves when they tell me about a bad day, “I feel stupid ranting about this to you when you’ve got real problems”. And that? That is a rant on its own. Which you’ll see. Because it occurs to me that there are a million and one little complaints that we have, all the time, and we don’t feel like we’re allowed to express it properly. We have to be calm and collected instead of just screaming FUCK FUCKFUCKING FUCKER FUCKHEADS!!! at the top of our voice. This site isn’t meant to be nothing but sweary rants, but being allowed to DO that here has brought me peace and catharsis. And I think more people could use that.

I don’t know if it will be a thing people use, but I’ve registered lalochezia.com and I’ve created a safe space for us to vent. Create an account. Prove to me you’re human. And then write about what makes you angry. Use as many swears as you like. The more the better. Complain about everything. Your shitty boss. The barista that shortchanged you. Your vague sense of discomfort and displacement in a dispassionate universe. Or just write the word FUCK 270 times if that makes you feel better.

Let’s fuck shit up.










Sometimes silence seems safer.

tragerstreit3 Comments

Hey guys.

I’m doing that thing I do, which is to just not say anything if I’m having a bad time, but the point of this space is to document all of it. All of the awesome, all of the real life boring stuff, all of the hard parts, all of the ugly bits. And while I hate burdening people with my woes, it feels disingenuous to not talk about them. Here, of all places. Where I’ve purposely carved a space.

So here goes.

I had a bad weekend. It kicked off Friday, when about an hour before I was supposed to leave, I was asked to provide information in the aid of making people unhappy, basically a sort of “we have to take some toys away from our kids, which ones?” and I know that it’s just going to make things harder and everyone’s already stressed out. There is literally nothing I can do about this, and while realistically I know it’s not up to me to be the Morale Champ of our group, most of the time I feel like it is. So when things are stressful and I can’t fix it, I get unhappy. I have a very limited power, and I use that power beyond what I probably should to keep things together, but it’s worth it to me if I can help my coworkers feel less shitty about their jobs, because I like them.

I’ve been watching my job take things away and make things worse, and it’s the nature of business, I totally get that, but it is supremely frustrating to see things happen and know that it didn’t used to be like this. And so I fell in to a sort of employment despair, because I can’t see things getting any better at all. And in that dark space, I reverted back to the thought that I STILL don’t know the origin of, “one more year. You just have to put up with this for one more year.” And my brain seized on that and began planning my exit and I completely freaked out, both because massive life change and holy shit could I afford this, but also a sort of egotistical WHAT THE FUCK ARE THESE GUYS GOING TO DO WITHOUT ME. If I leave, the smallest, stupidest things will cease to be, things that don’t mean much but make their lives easier. Like a goddamned supply cabinet. We’re supposed to fill out a form on a web tool when we need office supplies, but I deemed that Way Too Fucking Stupid and spent a couple hundred bucks outfitting us with a goddamned supply cabinet so that you can get a fucking PEN when you need one instead of filling out a form and waiting for an intern to bring you one. If I leave, no one is going to maintain that cabinet.

It’s all stupid shit, but it was my first moment of “holy shit my absence is going to cause problems for someone when this disease takes over”. There’s an intellectual exercise in “what would happen if I leave” that I think everyone indulges in, and to a revengey sort of degree when it’s to do with stressful relationships or jobs and we imagine how screwed they’d be if we just walked out; but this was a for-real, scary, “I am going to be gone and my void is going to cause someone genuine discomfort.” And it hit me kind of hard. And my brain, of course, spun in to the nightmare world of trying to plan financial escapes and mentally going over all of the homework I still have to do and…..

My brain still in this space, I went to game night with some coworkers, and that was awesome! Except when filling out a character sheet, and my hands just..wouldn’t work. I have very good penmanship when I take the care to do so. I have been complimented on my ability to write legibly on white boards. I’ve noticed some decline there, but that night I could barely read my own writing. And it sat in my gut and festered, and when I got home that night, I probably should have allowed myself to cry it out, but I tried to medicate it away instead. And that led to a whole weekend of moping and sadness instead of one night of crying jag catharsis.

I laid in bed and my cats sat on me and it was hard to move them off of me, and that made me sad.

I thought about the special pen and ink I got in New Orleans to write my goodbye letters and now I’ve waited too long to do that, and that made me sad.

I looked around my kitchen and the drawers of baking things and knew I’d never bake to the level of professionalism I wanted, and that made me sad.

I read Facebook and found out that my friend with cancer is taking a downturn, and I was sad.

I watched a new series that people were excited about and I just couldn’t get into it, and that made me sad.

Fun plans were canceled for Sunday morning and I just didn’t have the energy to do something else instead, and that made me sad.

A friend with MS reached out to be in a bad space, and I provided what comfort I could, and her pain and anger made me sad.

My cat barfed in the hallway, and I just…couldn’t get up to deal with it that moment, and that inertia made me sad.

It’s lifting now, it’s still there around the edges, but it will fade, it always does. But I need to be honest with myself when I get sad, and I need to give myself permission to mourn, and I should probably find a space to talk about this with someone who gets it but isn’t my therapist, but all of the ALS forums are just so AWFUL, one part “MY LIFE IS THE TERRIBLEST AND YOU DON’T UNDERSTAND AND HERE IS MY LITANY OF WOES” competition and one part “We sadly announce that our member Whassisface died this morning.” Neither is helpful. Cause sometimes it ISN’T terriblest, and I’m going to die, but not today. And sometimes you just need to say “This sucks” and have someone say, “Yeah I know” who really DOES. And then lie and say it’s going to be okay, even though it isn’t.

I’m learning a lot of things. I’m learning to let myself be helped. I am training myself out of assuming that when I accept that help, it is a burden to someone else. I’m learning to let myself be weak. I’m learning to give myself permission to breathe in the in-between times without becoming a lazy depressed lump. And I’m learning to let myself grieve for myself. They’re all hard lessons, things I’ve trained myself out of over a lifetime of only ever being able to count on myself. It’s hard to be vulnerable. And it’s hard to put these things here, it’s so much easier when it’s energetic anger or joy.

But for now, I’m a bit depressed. It’s okay. It’s understandable. And allowed. But it’s hard to be. I want to be my usual bouncy optimistic self, and she’s still around here somewhere, but she’s taking her sweet time coming back around.

So, sorry it’s been so long. I’ve been quiet and I shouldn’t be.

I think of you a lot, though. And I miss you.










Moved

tragerstreitLeave a comment

Last Saturday, the hottest day of the year so far, I moved from the Zombie Tramp House to my 2 bedroom, 1 bath apartment. The Zombie Halfway House of Ill-Repute.*

I had a whole gaggle of people show up to help. I was as prepared (stuff-wise) as I could possibly be for the event, disease and time permitting. Though still not as prepared as I’d have liked, I’ll grant you. I have a personal pet peeve about showing up to help someone move and they’re not even ready to do this thing. Like…I’ve had to do dishes, then pack the dishes, then move the dishes. YOU KNOW THIS EVENT IS COMING UP. PUT YOUR SHIT IN BOXES. IT MAKES IT EASIER AND HELPS YOUR SHIT NOT TO GET BROKEN. Some last minute things and cleanup is inevitable, but OH MY GOD PEOPLE WHY IS YOUR CLOTHING NOT IN BOXES YET. I try really, really hard to not be that person. So not only was most of my stuff in boxes, it was pushed out in to the hallway when I could, to make maneuvering as quick as possible.

And it worked! The guys (and gal) had everything in the driveway and front room, ready to rock, by the time we got back with the truck. I had a lot of friends work hard in stupid heat, and I was done in record time. I got the truck at 10:30, it was back to the U-Haul before 3. One last round to get the cats and all my groceries, and then I was all moved! With an hour to spare to get ready to go see Eddie Izzard perform (PROTIP: GO SEE EDDIE IZZARD PERFORM. HE IS A MAGICAL HUMAN BEING MADE OF UNICORN RAINBOWS AND SARCASM).

And Sunday, I was alone in my new apartment.

…which was the problem.

I had been frantically preparing for this move for a few weeks. As much to not be that person, as to keep my brain busy. Don’t think about it. Don’t think about the house being sold. Don’t think of your dream home in someone else’s hands. Don’t think about this being the first major loss to ALS. Don’t think about the sheer magnitude of work that’s going to need doing to find the next place. Don’t think about THAT place as temporary, too. Don’t think about this being the last Saturday you will ever sleep in at the house you own. Don’t think about this being the last time you’ll have to clean your kitchen floor. Don’t think about this being the last shower in a house you own. Don’t think about it. Don’t think. Don’t.

Sunday, I crashed. Left to my own devices, and with sweltering heat besides, I slept a lot. I went out for brunch with a friend, with the intention of going out and running errands and buying things that I needed for the new space, but found myself falling asleep at the table when he went to the restroom. He brought me back to the apartment, and I slept some more. I moved some furniture around, hooked up my TV and made my bed, and slept.

I called off work Monday. “I wrecked myself,” I told my coworkers in an email, “clearly I should have chiggity-checked myself.” And then I slept. I woke around 11AM, answered an email from my realtor, rolled over, and slept. 4PM I woke, with the intention of putting my PC together, and stared at my desk for 10 minutes before just sort of…collapsing out of my chair in to a heap on the office floor and lying there for probably twenty minutes, just staring at the wall. I went back to bed. 7PM I woke up, used the bathroom, fed the cats, unpacked my socks and underwear, and went back to bed. I just had no power to do anything else.

I’m not stupid, I know what depression is. And this? This is it. After all of everything, and a REALLY shitty week last week, I finally crashed and depression grabbed me by the jugular and shook hard. And I bled out and slept.

It’s still there, very much, but I managed to get to work today and do some things. My body is so fucking TIRED but my mind is going a million miles a minute. The sale is not quite final, there’s last-minute fuckery going on. I’m not quite out of the house yet, there was still some storage stuff and a couple of fans and cleaning materials, and then I have to clean everything up to make it presentable to its new owners, just as I’d wanted it presented to me but got a filthy house full of broken and useless shit instead. So much unpacking to do before this apartment is even navigable, much less livable. And so much to do after that before it’s mine. I have medical forms to fill out and new bills to pay and addresses to change. This afternoon, sitting at my desk at work, I cried, overwhelmed at how much was left, how much I had to do, and wishing someone would just fucking DO it for me.

I got a voice mail from some inspection company to reschedule an inspection I didn’t even know was happening at my house. That I still own. They’re doing work on the Zombie House to prep it for the final sale, now, and apparently the buying broker doesn’t think it’s necessary to actually let the owner of the house know that strangers are going to be there, working. I chatted up Justin, the Wunderbruder, and asked him when he was free to help me clear out the rest of the stuff at my house, to make the last storage run. He said he’d already moved all the straggler stuff into the garage, and just needed to sweep it out.

I said he was amazing, and he said Nope. Just a crazy white guy.

I told him it sounded like he had it mostly sorted out, and asked if he needed me; he said, “My thought was to bring to your place what goes there, get the storage key and code, stop back by the old house and get the remaining stuff out of the garage.”

And just like that, my brother had already sorted my shit and had a plan and I didn’t have to do ANYTHING.

“That way,” he said, “you can focus your energy on your new place.”

And I fucking cried. Totally lost my shit at my desk in front of my Sea-Monkeys and everything. Because he was an answer to my desperate prayer. I didn’t have to do anything. I didn’t have to ask. And I can’t even tell you how much that allowed me to just…fucking…BREATHE. For a minute. For a couple of minutes.

He has my back. I never doubted this. All of my friends have my back. I have never doubted this either, though this weekend was serious and hardcore proof. But to have him here, to have him step up and just…fuck. Just. Fuck. Without even….fuck. I can’t even tell you. Grateful. SO fucking grateful. He quiets my brain and I know I’m taken care of. And every time I tell him he’s amazing, he says, “Nope.” But he lies. In my darkest moments, I know I can pull through this because of the love of the people surrounding me. I don’t know what I did to deserve this much light, and this much love, and just..fuck. Yeah. So much love. And gratitude. And just…fuck. All of it. Everything.

Sometimes angels are real. Even if they used to punch you in the head when you were kids.

*That’s from a Dresden Dolls lyric. I’m not that clever.