Keep Your Mouth Shut, Or Just Say You’re Sorry

March 12, 2018 tragerstreitLeave a comment

We’ve forgotten how to die. We’ve forgotten how to be dying, and how to comfort. How to be okay when things are definitely Not OK.

We’ve lost the ability to not be absolute shitheads to each other by accident or ignorance when something terrible happens.

In my adventures with dying, I’ve accumulated quite a wealth of pretty words and useful words on the subject of death, dying, and grief. I’ve always meant to catalog and share them. When a friend who’d lost their mother was told today that she’s going to hell because she refuses to just leave her grief up to God and put on a happy face, I kiiiiiinda lost my shit. And knew the time to publish this is NOW.

So here it is, A Grief Primer.

Brutal Honesty

February 24, 2018 tragerstreit2 Comments

Spoiler alert: I don’t really like children. I’ve never wanted them, I don’t generally like being around them, they are messy and loud and completely irrational and they trigger my social anxiety like woah.

Disclaimer aside: I fucking love how brutally honest and open children are.

They can, as Fred Rogers said, spot a phony a mile away, and they will call it exactly as they see it. And a quality I’ve come to adore: they will ask questions. Adults will stare and make a point of NOT staring, and talk about anything BUT what they want to ask, and dodge the subject so thoroughly you’d think it was a game everyone is playing but you. Don’t Mention the Wheelchair, the worst party game ever.

But kids? Kids will come out and ask and feel no shame, and it’s refreshing as hell.

We went to dinner tonight, at a place with a LOOOOOOT of stairs. There’s a secret elevator entrance way in the back, but you have to have a host/hostess escort you because it’s seriously a maze and you have to go through a business building’s security desk. So tonight, when J wheeled me to the front counter to await seating, it was understandably baffling to a little girl how someone in a wheelchair was going to get up all the stairs she’d had to navigate to get in.

She couldn’t have been older than four. Adorable little thing in sparkly shoes and pigtails, and she turned to her mother when she saw me rolling up. Asking in that louder-than-normal-voice-whisper that kids have, she asked, “How’s she gonna get up here?”

To her credit, her mom was unembarrassed and handled the question honestly. “She’s not.”

“There’s a back way,” I told her.

The girl asked her mom, “Why’s she in the chair?”

“I don’t know,” her mom answered. To my delight, she did NOT try to hush the child up or make a big deal about it. When parents try to silence their kids’ questions, it feels like I’m some sort of shameful thing that has to be swept under the carpet. And hey guess what, when you skirt the issue? You pique the kid’s interest. Oh I’m NOT supposed to talk about this? GUESS WHAT WILL BE OUR TOPIC OF CHOICE TONIGHT. I *can’t* say those words? Well then BUTTS BUTTS BUTTS FART DOODY oh hi Grandma! Today I learned FARTS!

The child then, sensibly, turned to me. “Why are you in that chair?”

“My legs don’t work,” I told her honestly.

“How come your legs don’t work?”

“I have a disease. It makes them very weak. I’m not very strong anymore.”

“Oh.” She considered this new information, and then very logically continued, “well *I* am.”

“I can see that! You look very, very strong.”

And she flexed her little arms for me, beyond proud.

And that was the end of that. We shifted the topic to her shoes, which were very sparkly and lit up when she stomped, and she danced her own little disco until our table was ready and I was wheeled away. Hopefully, she will retain that honesty and people in wheelchairs will remain something normal, to have frank discussions about, and hopefully her parents continue to raise her well and when the answer is “I don’t want to tell you why I’m in this chair” or “It’s private why I only have one eye”, both parties deal with it with grace.

I see it as a continuation of all the conversations I’ve had with children, “Why is there earrings in your nose” or “how come you got purple hair” or “why did you draw all over your skin forever”. I enjoy those conversations because of their complete lack of judgement, their total curiosity. Not, “ewww you are weird and that’s bad” just “why are you different?” It’s an honest, open conversation and the world needs more of that.

So that’s the story of a completely charming child I spoke to last Sunday.

Cyborg Status: Confirmed

January 10, 2018 tragerstreit2 Comments

So uhhh I have my port installed. It was …an adventure. Lemme tell you all about it!

When last we left our intrepid heroine, she had a really nasty reaction to the adhesives on her PICC line dressing. We moved to a different type of dressing that didn’t adhere for shit. The day I was done with the 14 day initial run, my awesome home infusion nurse came by to change the bandaging. She recommended we get the PICC pulled ASAP so I could get the dang adhesives off my skin.

It took a little convincing to get the nurse to refer me for a port; she was concerned that if I had a reaction to the adhesive as it was, having a port would be just as bad. I was concerned about not having tubes sticking out of me at all times; at least the port would give me a 2 week break every month. We eventually secured the referral, and my surgery was scheduled for 12:30 on December 27th, with a separate appointment that morning at 8:30 to get the PICC removed. When I told my home infusion nurse, she arranged to come by that evening (after her company holiday party, even!) to pull the PICC so we could get the wrappings off me and let my skin recover a bit. We love Deena, she’s rad. It was surreal to see her pull the line…it kind just kept coming out, like a magician’s scarf of surgery and horror. It was MUCH longer than I’d thought. And it was friggin’ DELIGHTFUL to have all that out/off. And the shower I was finally able to take was goddamned MAGICAL.

I received a call from St. Vincent’s hospital the next day – the surgeon I’d been scheduled with wasn’t actually going to work that week, could I go to Providence Portland instead? At 9:30am? Sure, no problem. The next day, they called again – sorry, could we make it same time, but back at St. Vincent’s after all? No problem. J worked that day, so I asked my sister-in-law-of awesomeness Jeanette to be my ride.

And then I made a terrible mistake.

OK so I’m a smart person, and with intelligence comes curiosity, and I wanted to know exactly what I was in for with this port. I watched a video of a woman demonstrrating how to access a port; no big deal, kind of persnickety with regards to keeping everything absolutely sterile, but whatevs. And thennnnnnnnnnn I watched a video of a port install surgery. OK, I am not really squicked out by surgery, and I found the whole thing fascinating until the phrase “BLUNT DISSECTION” came up, and the surgeon LITERALLY TORE A HOLE IN THE PERSON BY JAMMING HIS PINKY IN THE INCISION AND WIGGLING IT AROUND. HOLY FUCKBALLS. My brain went NOPE, FUCK THAT, FUCK THIS, AND FUCK YOU FOR SCHEDULING THIS MOTHEFUCKING MEDIEVAL-ASS SHIT. Intellectually I knew it was fine – MORE than fine, because I was gonna be hopped up on Versed and remember NONE of it and get some good drugs afterwards – but the actual crux of the mistake had been watching this video righe before bedtime, so my brain just did donuts in the parking lot for awhile.

The morning of the surgery, I got a call from the hospital – would I mind coming in early? It was 8:30 and I was scheduled to check-in at 9:30, so I was a bit confused, but I told them I’d be there as soon as I could. We parked too far away and I was a sweaty mess when we arrived at check-in, where I was told…I was scheduled at the OTHER hospital, still. I explained the conversations, they luckily sorted it out. I went upstairs, put the goofy little gown on, and waited. The nurses came in, partly to take vitals and start an IV and make sure I wasn’t pregnant, and partly to play peek-a-boo with my adorable niece. The doctor came in to introduce himself and ask if I had questions. he was delighted that I referred to the Huber needle I’d be using to access the port as “the crooked needle”. I was delighted by his use of the phrase “twilight sleep” to describe the conscious sedation I’d be under. They’d give me benadryl in my line along with the sedatives and a dose of antibiotic, he said, hopefully I’d just sleep through the whole thing.

I remember them wheeling me into the surgery, and seeing the GINORMOUS fucking monitor he’d be using to make sure he was placing the port properly, with x-ray. It was weird to see my name there. The several nurses had their A-Game banter going, and we were having a great time explaining names and tattoos to each other. One nurse thought I had an accent, and asked how long I’d been a Yankee. “My whole life?” A male nurse/technician/whathaveya scrubbed me down with a blue solution, making me the world’s least convincing Smurf. I was freaking cold, despite the warmed blanket they’d put over me. The IV nurse told me he was putting the antibiotics in my line now, and I felt the cold sting. he told me he was starting the sedative now, and then I…

I do not remember a thing after that.

I woke up with a very large image of my x-ray on the monitor, showing the line running into my artery. I was shivering. They wheeled me back to the recovery room, and I slept a bit. Jeanette had taken my niece Jewel to get some lunch or something. They brought me a turkey sandwich, which I devoured. They had put the dressing on a bit shitty; I couldn’t raise my head all the way, or turn my head much because of the way my skin was taped up. It itched a bit. I was given discharge instructions and no pain killers (“Just take some Tylenol”). My sister came back, I got dressed, she took me home, and I slept some more.

The next morning I was aware something was up. I was naughty and pulled the dressing off a bit to allow myself the ability to raise my fucking head, and where the dressing had been tugging was now an angry red wound. I was very itchy. All over my chest. Angry red hives, all over my chest, up my neck, and across my chin. Tylenol, it turned out, did not fucking suffice, so I took some of the hydrocodone I had leftover from breaking my ankle that the doctor hadn’t wanted to give me either because ibuprofin should be fine. YOU JUST TORE A HOLE IN ME BIG ENOUGH FOR A 1 INCH SQUARE MEDICAL DEVICE AND ALSO CUT MY NECK TO SHOVE WIRES INTO MY VEINS – NEWSFUCKINGFLASH TYLENOL AND IBUPROFIN ARE NOT SUFFICIENT FOR THIS. BLUNT. DISSECTION. BITCHES. I slept some more. I woke up to even angrier hives, annnnnnnnnd my eye was a swollen bag of fluid.

So uh…yeah. I was having an allergic reaction to something. It couldn’t be the dressing itself, since the hives were everywhere. It got worse and itchier over the night. I had a different IV home nurse visit that day, to change the bandage since they’d thoughtfully left a needle in the port for me to start the infusions, but I’d bled a bit so there was gauze under the dressing which needed to go. She was very concerned about the reaction, namely that it might be a reaction to the port itself. My delightful friend Lizzie was coming over that day with delicious food for me, and she kindly picked up some Benadryl on her way in. Luckily I had a doctor’s appointment already scheduled for the next day, for an unrelated issue and holy FUCK will I rant about that in a bit. I took Benadryl, ate delicious home made food, and slept a lot.

My PCP is a cool guy, and didn’t mind dealing with the reaction as well as the initial problem we were scheduled to deal with. He suggested two more antihistamines in addition to the Benadryl, and to contact the hospital if it didn’t clear up by Tuesday (Monday was New Year’s). Luckily it did, mostly. I think the problem was the smurf shit they scrubbed me down with, since the hives pretty much appeared everywhere they used it. I have no explanation for my eye becoming a blister, tho.

We’ve now completed the second round of infusions, the port works beautifully, and we pulled the needle out last night. I am once again dressing-free for two weeks. The scar is already nearly healed up, and the itching has almost entirely subsided now that I’ve got no more adhesives on me. I can feel the port under my skin, and it’s weird.

Now I am become cyborg. beep bloop bleep.

Accommodation

December 26, 2017 tragerstreit2 Comments

Fun fact: I AM A GIANT NERD.

You already knew this. Probably. Almost definitely. If not, welcome to me; I’m a giant nerd.

Most every Wednesday, I play a table top role-playing game with a group of guys that have become good friends. We are virtual murder hobos, adventuring and killing monsters and arguing amongst ourselves about which monsters need killing, and it’s a lot of fun. I absolutely adore the group. The only hitch at all is that my stupid disease gets in the way a lot – I’ve had to miss a lot of games because of appointments, or a couple of times I’ve fallen and hurt myself, or sometimes my mana is just too damn low to deal, or once or twice Sadbrain said nope. Luckily, they’re very cool about me missing games; they understand. We had a talk once to just make sure that it wasn’t that I was not enjoying the game but was too polite to say so, so I was making excuses; once they were assured that I absolutely enjoyed the game but my disease is stupid, we were all good.

Part of that hitch is getting to the place we game. It used to be at the storyteller’s house, which had two steps and no rail. It was…not fun getting inside. Luckily before that became an impossibility, we switched to another player’s house, which has just one step. Much easier. Still an effort, and some days a Herculean one, but better. This last Wednesday, I had low energy, and I sarcastically complained to J as we were heading over, “Tim needs to get a fucking ramp.” If J didn’t drive a little car, I’d probably have bought one of those portable ramps to just carry around with us for these occasions. It would definitely make things easier. I’d never actually expect someone to modify their home for me, obviously. But some days it probably would be the final straw in deciding if I had the energy to go to to game or not. Stupid disease.

We pulled up to the house, and everyone was standing around outside, which was…odd, because it was cold as hell. We usually start game at 5:30, but we were told tonight was a late start, so maybe everyone had just gotten there. I got out of the car, and they all kind off…turned to face me. Matt, the storyteller, told me that they all understood that I had hella circumstances and that it made it really hard for me to get to game sometimes. For a moment, I thought, “OH shit, they’re kicking me out of game because I’m unreliable. Well, I can’t really blame them.” He continued to say that they really appreciated the effort I made to show up, and that they all wanted to make sure that I’m able to continue doing it for as long as I can, so…they all parted to show me something behind them.

Guys.

GUYS.

THEY BOUGHT ME A FUCKING RAMP.

To get in to the house. A ramp. For me. And they even put stickers all over it.

For me.

One of the worst things about acquiring a disability is feeling like you’re a burden. Your friends and family have to make plans around your diminished abilities, suddenly old traditions have to be abandoned. Even though everyone insists – INSISTS – that you’re fine, they want you there, they’re happy to make the changes, you can’t help feel guilty that they’re missing out on cool things because of you. A lifetime of Sadbrain convincing me that I’m not worth the effort in the first place does not help the matter, and I’ve worked my whole life to make that voice be silent, with very mixed results. In the meantime, events are missed, changes are made, things are rearranged, and my friends and family do their best to accommodate me and tell me it’s alright.

Funny word, accommodate.

It can mean providing sufficient living space, or making a compromise, or adjusting to something new. It means somehow going out of your way for someone. In my world it’s usually got a slightly cynical sister word attached, “reasonable”, when dealing with work and places of business. Reasonable accommodation. Legally doing the absolute bare minimum in order to convince ADA enforcement laws that you’ve done …something. (I’m a little bitter, yes)

When it’s your friends, though, and you know they sure as shit didn’t HAVE to do anything, that they made an effort because they legitimately want you around, and here is absolute proof? Yeah I totally teared up. It was an amazing thing. A selfless thing. An important thing.

It makes dealing with it easier. It makes being alive easier.

It makes it WORTH it.

Stuff Keeps Happening

December 13, 2017 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. 😀

Fall-ow up Post

December 7, 2017 tragerstreitLeave a comment

Tuesday was not a good day.

It was the urology follow up, and the day began with a clear reminder of why the appointment was needed, followed by massively uncomfortable prep, and then the Lyft ride to the hospital. I was half an hour early, thankyewverymuch. Once inside, I don’t even know exactly what happened, only that my walker was moving faster than I was, and I didn’t have the strength to pull it back under me, and suddenly I was kneeling on the ground. Two older men noticed my plight, and asked if I needed help.

“Yes please?” The question mark was because I had serious doubts these two were going to be able to get me off the ground. Doubts well founded. They were not. A third, younger man assisted and we finally got me seated on the walker. They all left with my profuse, if a little breathless thanks. I wasn’t hurt at all. After catching my breath, I stood a little shakily (yay adrenaline!) and made my way to the urologist, who has a very heavy office door. A gentleman inside noticed I was having a hard time pushing the door open, and opened it for me.

…Only I was leaning on the door knob at the time. With my support pulled away from me, I lost my balance and landed on my back in the hallway.

Please ask if someone needs help before ‘accommodating’ them? This is the first time it’s actually caused a fall, but I’ve NEARLY been pushed or pulled off balance many times by someone trying to help. Please offer to help, but wait until I am aware of you and ready before doing the thing. Thanks.

I was surrounded by noisy, concerned people, including the really bitchy admin from last time who was actually quite sweet this time. One of the people who helped me up this time was one of the same older gentlemen from before. “If I’d known you were coming here, I’d have waited with you.” We got me seated again, and I was left to rest in the lobby, blissfully left to my own devices once everyone was sure I was OK.

The appointment itself was…uncomfortable. All sorts of probes and wires were inserted or otherwise attached, then my bladder was filled and i was instructed to bear down. Nothing leaked, which in retrospect was hardly a surprise because it’s only when I get UP that problems happen, but I didn’t have the presence of mind to point that out. The wires were disconnected, the doctor came in and looked at my results, and…instructed me to pee more often.

That’s it.

That’s her whole plan. Just get up every three hours and pee, maybe you won’t leak. Oh and keep doing those Kegels with muscles you no longer possess. She clearly does not speak ALS.

I left angry and frustrated, and took a Lyft home, only to find Amazon had delivered a package while I was gone. Right in front of my door. My case of Monster. My very heavy 24 count case of 20 ounce cans, right in front of the door. Annnnnnnnnnnd in trying to move it enough to get inside the door, I uh..yeah I fell again. Badly this time. Pain shot through my previously damaged knee and my freakin’ ankle that was broken. My mom, alerted by the noise of the fall (but not the swearing, oddly enough, she didn’t hear me yell), came out to try to help, but there wasn’t anything she could really do. Once I caught my breath and got my legs out from under me, I was able to shove the Amazon box out of my way and crawl inside. It was good to have my mom there this time; even though she could in no way help me up, she was able to get the walker out of my way and put our stepstool by my bed so I could use it to haul myself up.

Thank God I had taken an ativan that morning before leaving, or I’d have been a blubbery mess. As it was, I took a well deserved nap and was pretty sadbrained the rest of the day. Yesterday I was pretty dang sore all over and worked from home. Landing on your ass three times in 2 hours takes it out of a girl.

BUT! Yesterday was also the completion of my first week of Radicava! I think it’s going well. It maaaaaaayyyyyyyy be exacerbating my headaches though; I’m keeping an eye on it. It’s been an eventful and stressy week, so hopefully the coming one is kinder and a more useful baseline. I won’t know really if the meds are helping anything until March, the next Clinic day. I’m committed to keeping it going at least until then.

So now you’re up to date, and I’m gonna go play on the internet. <3

A Rad Update

December 4, 2017December 4, 2017 tragerstreitLeave a comment

Step 1. Gather the required materials.

One box of Radicava, which contains two 100ml bags. Two saline flush syringes. One package of IV tubing. At least two alcohol prep pads. One IV pole.

If we were taking labs, or redressing the PICC line, there would be so many more components. This, though, is the minimum. There will come a time when this is routine and second nature, but for now, everything is still double and triple checked. We lay things out like we’re preparing for surgery. It’s not far from the truth.

Step 2. Wash your hands.

There’s hand sanitizer, which also gets liberal use, but there’s no substitute for scrubbing your hands with soap and hot water. I find it almost impossible to wash my hands well these days, and drying is a nightmare, so I typically opt for the sanitizer only. If your hands work, though, go wash them.

Step 3. Open all the packaging.

The box of Radicava contains two trays of 100 ml bags of medicine, each with a silica bag and a little pink oxygen indicator. We peel back the lids on the bags, which each have a plastic seal over the input valve. We leave those intact until the last minute. We unwrap the two saline syringes, but leave the caps on. We open the first alcohol prep pad and set it aside. We unwrap the IV line and hang it over the IV pole. OK. I think we’re ready.

I’m appalled every day at how much waste this generates.

Step 4. Prep the line and bag.

We close the IV line, either through the clamp or dial, depending on the tubing style. Removing the bag’s seal and uncapping the IV line’s spike, we push the spike into the gray seal on the bag as straight as possible so as not to split the bag. It takes a surprising amount of force to do this. Because the line is clamped, nothing happens yet. We squeeze the tube’s chamber to fill it about half full of medicine. Carefully, slowly, we unclamp the line and allow the medicine to flow through the tube, stopping it just before it spills out of the end. We clamp it off and set it aside, dangling harmlessly from the IV pole for now.

Step 5. Sanitize the input valve on the PICC line.

The alcohol pad is scrubbed over the PICC’s blue input valve for 15 seconds. It doesn’t have a cap, so it’s out in the open all the time, well, tucked up under the sock against my skin, and must be cleaned carefully. We let it air dry.

Step 6. Saline Flush to clear the line.

Uncapping the saline syringe, the plunger is pushed juuuuuuust a little bit to push the air out. Or, you know, accidentally create a beautiful arc of saline in the air if you push too hard. The syringe is then coupled to the blue port on my PICC, twisted in place to secure it, and the saline injected a push at a time, to the rhythm of a heartbeat. Bublump. Bublump. On the second push, I feel the cold liquid in my vein, and a moment later, I smell and taste the saline in the back of my throat. It’s a hospital smell. The rest of the syringe is injected, decoupled, and disposed of in the biohazard bin.

Step 7. Insert tubing into PICC and begin infusion.

The IV tube is pushed into the blue PICC port, the little plastic collar screwed tight to secure the connection. The tube is unclamped or undialed, and the Radicava begins to flow into my vein. It feels like nothing. It’s not cold, like the saline, it has no taste, no burning like some antiseptics and anisthetics. There is no sensation at all, and the only reason I know I’m getting medicine is to watch the IV chamber steadily drip drip drip drip…

Step 8. Swap bags when the first one is empty.

The tricky part to this is allowing all of the medicine to drain out of the bag without letting the chamber empty, which will allow air down the line. Air in the line is bad. I have remedy available, if that should happen; it’s easy enough to use a saline syringe at the bottom of the line to force liquid back up into the chamber and clear air out. But it’s best to not let that happen. We swap the bags and sit back to wait some more. This is supposed to be a 1 hour infusion, but it’s taking closer to 2. A lot of the reason for this is an extension of the PICC line we added so that I can reach the ports myself, which bottlenecks the flow AND adds extra distance for the medicine to have to travel.

I can do a lot of this myself, except the coupling of the IV line to the PICC. Both ends are very floppy and you can’t touch the ends without having to start over and resterilize. Doing all these things, though, cause my hands to cramp up a lot and then be completely useless for the rest of the day, so I happily leave it to others when I can. J’s been doing it the last couple days, which is marvelously helpful.

Step 9. Bleed the line carefully.

Once the bag is empty, we play a game of chicken with the medicine, allowing it to drain down the line until the air is allllllllllllllmost to the PICC line. We don’t want air in my line, obviously, but we also want every last drop of the insanely expensive medicine in my veins and not in the trash. Once the line’s drained as far as we dare, the line is clamped, decoupled, and the entire bag and IV line is discarded. More trash.

Step 10. Saline flush.

Hands are washed and sanitized again. After another scrub of the port, the second saline syringe is rid of air pockets, attached to the blue port, and screwed in. More heartbeat push, more cold, more hospital smell and taste. Yummy. The syringe goes in the biohazard bin, even though it never really touched my fluids. Quite the opposite.

Step 11. Redress and cleanup.

We’re done! Everything is thrown out, the IV pole is collapsed and stowed, and the PICC line is coiled up and tucked under the itchy fishnet sock around my arm keeping everything covered.

*****************************************

Today will be day 5. Fortunately, it is not time sensitive in application like an antibiotic might be, so as long as I do it sometime on that day, it’s fine, it doesn’t need strict scheduling. Last night’s dose began around 8; tonight will be closer to 10 or 11, my first ever dose was 9 AM. For the second round, I have to do 10 infusions over 14 days, and I can also pick and choose dates and times. If I want to do Monday through Friday and skip weekends, I can. If I want to do all 10 days up front and get it done, I can. It’s up to me.

The main problem I’ve had so far has been dealing with the PICC, in that it’s inconvenient as hell (I miss showering – I can only shower if I take these huge complicated precautions to wrap it all up watertight and I just can’t pull it off on my own) and itchy AF. The bandage tape is itchy, the sock is itchy, the lines are tickly and like to snake their way out of the sock and say hi to the world from under my sleeve. It’s convenient as hell for not having to have an IV poked in every single time, but everything else about it sucks. I’ve already decided to get the port-a-cath installed once I’m done with this round.

I’m tolerating the drug just fine. I *think* it’s exacerbating my headaches, but nothing unbearable, and it may be causing night sweats, but I have to research that to find out if it’s even a thing that might happen. Otherwise I’m doing good. We’ll find out in March if it’s affected my decline in the least bit.

So that’s everything so far about radicava, darlings. It’s going well. I’m still terribly excited about all of this.

The Good Kind of Progress

November 29, 2017 tragerstreit1 Comment

I met yesterday with my PT specialists and a sales rep to pick out my new wheels. I’m getting one of these!

I opted for the midwheel drive, it’s got a smaller footprint and pivots around corners rather than steering like a car, so it’s easier to drive. I’m still totally gonna run into things. Count on it. I got the USB charging port (instant popularity!) and a cup holder and..yah! I also opted for the seat elevation feature that will let me look people in the face when sitting in the chair, even though insurance is proooooobably not going to cover it. But I think being able to see over tall counters is important.

Tomorrow I start Radicava infusions. The nurse is coming over around 11 to teach me how to do it, and then Friday s/he’ll come back to watch me do it and make sure I learned properly. They’ll also change out the dressing tomorrow, for which I am grateful. It’s itchy.

This has been your baby update.

Rad

November 25, 2017November 26, 2017 tragerstreitLeave a comment

The latest word on the street in ALS Land is Radicava.

It’s a new, FDA approved treatment, and we’re all pretty dang excited about it because there’s been nothing new AT ALL in 30 years. All we have is riluzole (brand name Rilutek) which you take twice a day and maaaaaaaaaybe gives you another six months or so? Or maybe destroys your liver? Other than that, the only treatment is really an attempt to mitigate some of the symptoms, like the muscle twitches (‘fasciculations’) and cramps, your muscles locking in place (spasticity), the complete fatigue because everything is a lot harder when half the muscles in your legs are gone, depression and anxiety – because it’s not really the five stages of grief so much as the five constantly cycling whirlwind moods of grief. Sometimes I hit them all on the same day.

Radicava (generic name edaravone) isn’t a miracle drug, by any means. It’s completely ineffective for a lot of people, and at best gives just a 33% reduction in the rate of decline. It has a lot of issues, of course, it can cause problems in people with asthma, and well..it’s expensive as all hell. I’ll get to that in a moment. For now, here’s the basics, if you want to read some more, and here are some of the naysayings about it.

Me, though, I wanted to try it from the get-go. I’ve been abundantly clear (or so I thought) that I am willing to try any new treatment, just to be doing something, to provide a little more data for future research, if nothing else. Every Clinic Day, we asked about the latest updates, the most recent news, when is it available. And so I was frankly…crushed, and a bit angry when I found out at last Clinic that people have already been trying it and I wasn’t contacted. That anger increased when they seemed surprised that I was interested in trying it. Like..how could I have been more clear?

Anger turned to rage when I was told that insurance would not pay for it. Because..once again..I have had ALS for too long. Because statistically, I should be dying any minute now. The average life expectancy is three to five years, and I hit three years in April. Never mind in actuality I’m still VERY MUCH alive and not going anywhere soon, thenkyouverymuch. And it wasn’t the pharmaceutical company denying me, it was the insurance company. I wasn’t worth the cost. If I’m statistically almost dead already, it’s not cost effective for them to pay for this. You’ll recall I said it was expensive – let me show you how expensive. Radicava is administered by infusion. Each infusion lasts for about one hour and administers a 60mg dose. The cost for each infusion is as follows:

The medication itself: $1238.80
The medication to flush the IV/PICC/port line into your vein: $180
If you do in-home infusion, the nurse’s time costs $251.20 for the first 2 hrs, $86.10 each hour after if needed
If you go to an infusion clinic, the cost for nursing is $107.10 for the first 2 hours, $50 after.

Now, since it’s not easy to get anywhere and do anything with ALS, we’ll go with in-home infusions, so that is $1,670. Per dose. How many doses do you need? Well, you start treatment with 14 consecutive days of infusions. That’s $23,380. Then you take 14 days off. Then you do 10 consecutive doses over the next 14 days. Then 2 weeks off. Then 10 over 14. For the rest of your life. It’s over twice what I make a year, to use this drug. As much as I hate it, I get why insurance would consider this a dumb investment. I hate that that is even a consideration in whether or not I have access to this.

Knowing that I was going to get denied, I asked to try anyway. I filled out a form giving the infusion clinic access to my medical records, on the off chance they could use this to leverage my insurance company to pony up some dollars to help a dying girl out. Monday I got a call from Searchlight, the company coordinating the treatment, and they said that typically my insurance covered this treatment after a 5% copay. Luckily, she said, once I hit my out of pocket max, it’s all covered. Did I have any questions?

“Yes,” I said. “…Does this mean that I actually am going to be covered for this?”

“Well, we’ll be sending your information along to your doctor provider, but it looks like we’re good to go.”

I dared to let myself hope. Just for a moment. I went out with J and had celebratory sushi, but said nothing to anyone else (except my mom, who was here when I got the call) just in case it was a misunderstanding.

It wasn’t.

Wednesday I got a call from the nurse to discuss the actual cost, how much I was responsible for, and to start making appointments. She gave me the above price list, and we discussed would I like a PICC line or a port? Since this was pretty much going to be a regular thing, infusions by regular IV aren’t an option – imagine having to get your vein stabbed every day for an hour long IV drip. Folks on dialysis, infusions, or chemotherapy usually opt for either a PICC line or an implantable port. A PICC (peripherally inserted central catheter) line goes in your upper arm, and then into a central vein in your chest. An implantable port, or port-a-cath, gets implanted under the skin in your chest and also snakes into a central vein. PICC lines are technically good for a month, though if you treat it carefully, it can last much longer. A port-a-cath is considered a permanent implant. PICC lines are much simpler to install, it’s just a complicated IV insert with a chest x-ray to make sure it’s done right, but a port requires at least conscious sedation. A PICC line needs upkeep once installed; it’s basically two little ‘pigtails’ as she called it, sticking out of your skin and held in place by tape. You can’t get it wet, and have to wear some kind of sleeve to keep it from getting caught on things. A port is just a little bump under your skin, no maintenance required. PICCs are easy to remove if you change your mind. You’re kind of stuck with a port for the rest of your days.

So yesterday I had a PICC line installed.

If I tolerate the meds, we’ll install a port.

This is happening. Even if it does me no good at all, even if it actually makes things worse, we have tried. I am a data point. I did something. I did everything I could. I should start infusions next week.

I can’t wait to keep you guys posted.

Time to Take the TMI Train to Tinkle Town!

November 6, 2017 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.

Inappropriate Friends are the Best Friends – Part 6

August 23, 2017 tragerstreit1 Comment

My cats knocked my depression meds into their water dish and I was completely unable to do anything about it, because it’s a heavy ceramic fountain. So not ONLY did they ruin half my monthly supply, they poisoned their water. Assholes. Insult to injury, it was the day after my friend Lizzie had come over and thoroughly cleaned the fountain out while she was helping me with cleaning the apartment (we love Lizzie a lot). She expressed dismay that she’d JUST cleaned the damn thing out, and I told her that it was okay, I’d strongarm J into helping me.

She replied in an email, “If you had strong arms, you wouldn’t have to ask J!”

And I laughed a lot.

She had replied in email instead of comment, because she wasn’t sure it was too far. It wasn’t. Gallows humor keeps me able to deal with this, and I realize that sometimes even my own jokes are ‘too far’ for some people – like recently when someone asked me how my new tattoo’s white ink was going to fade, and I told them I’d be dead before I had to worry about it.

Some day, someone will say something that goes too far. probably. Maybe. I dunno. I’m pretty fucking dark. It’s beyond gallows humor…guillotine humor? Firing squad humor? Saying it out loud a lot of times as a joke makes it easier to take it seriously. The concept of your own mortality is a bitter pill to swallow, so I need to wash it down with humor.

At least for as long as I’m able to swallow.

Fall down, go boom.

August 7, 2017 tragerstreit3 Comments

I got hit by a car on Saturday.

If I did not have this stupid disease, it would not have happened. I was alerted to the car in time, and had I been able-bodied, I would have been able to blithely move out of the way, probably with an angry yell and discourteous finger gesture at the driver. But instead, I heard J’s dad yell, and looked over to see backup lights on a car I hadn’t realized was even parked there, and tried very hard to get out of the way and failed.

If I had to be hit by a car, this was totally the way to go. It was the gentlest of impacts ever, the equivalent of someone slowly leaning on me until the walker got pushed over and me with it. I scraped up my knee and my elbow, and got a little road rash on my hand. That’s all. The worst part was spilling my breakfast leftovers. J’s dad banged on the trunk of the car to alert her to our presence, which brought her to a stop; if he hadn’t, I’d likely have been hurt worse. The car and my walker traded a little paint, instead of her going over me completely.

The next twenty minutes were a blur of being asked a thousand times if I was hurt, was I sure, did I need an ambulance, was I okay, are you sure. I told them I was basically just pushed over, it was the tiniest of falls, and J’s mom helpfully reminded me it was “just a fall” that broke my ankle. Thanks, mom. The woman who hit me was beside herself with mortification, and made sure she gave me her information just in case the next day I wasn’t feeling okay. She was using someone else’s car, she said, and was used to a backup camera, though I was standing behind and to the right of her parked car; had she used the side mirrors she would have seen me. I can’t fault her too much, though, it is a TERRIBLE parking lot that requires you to drive on the sidewalk to back out. It is exactly the length of a car. So, of course in my brain, it’s perfectly safe to have been standing where I was, because I was on the sidewalk – but to her, I was standing in the driveway in a bit of a blind spot.

I told everyone my main concern was how the hell I was going to get off the ground – there was J, his elderly parents, his elderly aunt, and his cousin who was small. The driver was also a shorter woman, and the bystander who came over to help was similarly small.
Turns out the driver was a paramedic, and we had NO trouble getting me off the ground. I told her it was okay, I was fine, and at least she had a story to tell.

“Are you KIDDING??” she asked incredulously. “I’m not telling ANYONE about this.”

And she probably won’t. She had someone in the car with her, and I wouldn’t be surprised if she swore her to secrecy. A lot of my friends (I love you vindictive, protective people) expressed wishes that she feels guilty FOREVER, and my little brother even offered to “Tonya Harding her”. The guilt she feels is more than adequate punishment I think; as my little brother also said, “backing into a cripple is the same as running over a normal person at a hundred miles an hour.”

Thanks, Justin. <3 The next day, the soreness kicked in; my shoulder's a bit stiff and my lower back apparently got a bit twisted. But still - I get to tell people I was HIT BY A CAR!! and all I came away with was a little soreness and a knee scrape the size of a quarter. This morning I saw the bruise on my hand come through - I dunno if you can see it:

The two slices are from something else. Though, I had a severe shock this morning, looking at my palm, and realizing how much of my hand has completely atrophied. There’s supposed to be a big fat pad at the base of your thumb, and mine is actually concave. I have to use my other hand to hold my fingers open to even look at it. It’s a very strong..I don’t want to say body dysmorphia, since my deformities are real and not perceived..maybe body horror? Unrealism. It’s strange to look at the changes my own body is going through and feel like I’m wearing someone else’s skin sometimes, because that’s NOT how I remember my hands. And yet, they’re mine. Definitely attached to me, only showing physical deterioration of the strength I perceive slipping away.

But anyway. I got hit by a car. I was then reprimanded by my loved ones for hurting myself AGAIN, and specifically admonished to “stop having so many woes and calamities”.

I’m surely trying. I think I’ve filled my quota for the year. My drama card is full of punches, so I think I get a free latte or something. BUT. I’m okay. I got hit by a car and sorta walked away. I’m very lucky.

Can-tastic!

July 31, 2017July 31, 2017 tragerstreit1 Comment

Ok, so this isn’t one of those “little things have big impacts” kind of stories, though it sort of is. It’s a “help from unexpected sources” story more than that. In a really stupid goofy way. Some background:

1) My friend Nathan bought me a subscription to LootCrate. I’ve raved about that before, but let me do it again. We weren’t ever really the best of friends or anything, just work friends, and we lost contact for a few years. Like ya do. When he found out about my diagnosis, he bought me this subscription so I could have something fun to look forward to every month. It was an unexpected surprise and I can’t even remotely convey how much joy this brings me, for a lot of reasons.

2) LootCrate is a collection of VERY geeky things, from all kinds of fandoms. I’ve gotten t-shirts from Teenage Mutant Ninja Turtles to Overwatch to James Bond and everything in between. It’s current pop culture and retro childhood stuff, and I’ve gotten a lot of really awesome swag, including stuff you literally can not get anywhere else. Tetris fridge magnets. A Tron pencil bag that glows in the dark. SO MANY TOYS. And awesome aforementioned t-shirts. Like, half of the t-shirts I wear are now LootCrate shirts.

So this month’s crate theme was “animation”. It included swag from a couple of things I’m not that into (it happens, but I ALWAYS find someone who really loves said fandom and is happy to take things off my hands), and drink koozies from the show Futurama. Full disclosure? I’ve always kinda hated drink koozies. They strike me as a bit white trashy and that’s not helped by them USUALLY being branded with some stupid or plain offensive not-really-a-joke. But I loved Futurama, and this was a fun thing, and I’m ALWAYS drinking soda (Sorry Kelly, I know I need to be drinking water but CHERRY COKE ZERO IS DELICIOUS), so I slid my can into one.

Oh my god guys.

THE CAN IS SO MUCH EASIER TO PICK UP.

I typically have to use two hands to pick up a full can of soda, and as I drink it, I press a dent into the can to help me grip it. Hang on..lemme take a picture.

Every can I drink from has that little divot for my thumb. heh. But with the drink koozie, I don’t need it! It’s squishy so I can get a good grip on the thing without leaving a little dent in. I bet Nathan never knew he was signing me on for handicap aids. But that’s what I got this month, and I never would have figured this out on my own.

So that’s a happy thing that happened.

ALS:FTS Video Blog Thingy Numba Eleven: That’s right. Eleven.

July 27, 2017 tragerstreit6 Comments

Unsafety Net

July 19, 2017 tragerstreit2 Comments

I have Clinic next Monday, and one of the things I need to talk to them about is maybe upping my depression/anxiety meds. I’ve been having severe bouts with SadBrain lately, and while I have hella circumstances that warrant being sad, I don’t like being crippled by ennui just because a cat video looked at me wrong.

Last night, even though I KNEW BETTER, I watched a documentary about coral on Netflix. I knew it was going to deal with the devastation on our reefs caused by climate change, but I love coral and wanted some beautiful imagery. I wasn’t disappointed on either front, and when one of the guys involved with the project started crying over the devastation of his beloved corals, so did I. And I cried for a long time.

And I thought, not for the first time and CERTAINLY not the last, that I’m a little bit glad I’ll be dead sooner than later. I don’t want to live on this planet anymore. And I honestly couldn’t tell if that was SadBrain or Cynicism talking.

Either way, both them bitches need to shut up.

Broken

July 5, 2017 tragerstreit1 Comment

As usual, I can’t tell you exactly why it happened, what was the mechanism, only how it happened. I was in the bathroom, turning left at the sink, and I went down. Despite having a death grip on my walker, I fell to my knees with my feet doubled up under me. I’m getting pretty good at falling, but I was immediately aware that Something Was Amiss.

What happened next was a full five minutes of writhing and howling on my bathroom floor while my two cats freaked the fuck out. Now, I have a pain tolerance that has impressed doctors. I developed dry socket after a tooth extraction and was so unreactive when the dentist was packing it, he had to check that I hadn’t passed out. But this? This fucking hurt. There’s a difference in your body, when you’ve hurt yourself versus really fucked something up. A primal signal somewhere in your animal brain of “oh shit we have done it now.” Outside of a few memorable migraines, I’ve never been in so much pain. My stomach was queasy and I was visibly trembling as I tried to sit up, tried to breathe. Shivering. Panicking. Every movement spurred a fresh tirade of wordless howling, one long string of OWWWWWWWWOWOWOWOWWWWWWWWW and I’m honestly surprised that the neighbors didn’t call the police.

…I’m kinda pissed off that they didn’t, if I’m being honest. I know they were home, and I know how well sound travels across our apartments, and the fact that I was yelling myself hoarse (literally) and no one came? Pretty pathetic.

I tried to text J with my SmartWatch O’ Doom, but it told me SMS was unavailable. The shit, watch?? WE WERE SUPPOSED TO BE A TEAM IN EXACTLY THESE SITUATIONS. THIS IS WHY I BOUGHT YOU. I knew I could call him, though, or even 911, with the thing, but I resolved to try to at least give myself a few minutes to breathe and calm down and hopefully the pain would subside enough where I could think straight. I’d call J if I couldn’t get myself off the floor, and text him if I could. OK. Think. Plan. Move. Slowly.

I still don’t know how the FUCK I managed to get myself on my bed. But I did. I messaged J that I’d hurt myself and thought I needed to go to urgent care. My ankle was already puffy, and my poor previously damaged knee was pissed off again. He offered to leave work immediately, but I told him I could wait the 90 minutes for his shift to end. I didn’t think I broke anything, but even if I had, 90 more minutes was not going to make it more broken.

PROTIP: BROKEN LIMBS ARE NOT ACTUALLY LIFE-THREATENING EMERGENCIES. THEY JUST SUCK.

I popped three Advil and waited. The trouble with ALS is that you can’t really inspect yourself for a break – I can’t wiggle my toes on a GOOD day. It felt like a sprain, but I had no real frame of reference as I’d never broken a bone before. Everything still moved, no grinding feeling, it just hurt like hell. I hoped it was just a sprain.

Basically, I was fucked if it was a break. I’m already reaching the end of my ability to get around with a walker. I can’t use crutches, so a cast – or God forbid SURGERY – would pretty much be the end of me walking, ever. It would mean a wheelchair during recovery, after weeks of which I likely wouldn’t be able to get back on my feet. I tried not to think about it too much, and waited. Whatever I did to myself, it was bad, but I optimistically didn’t think it was THAT bad.

J came and got me, he helped me put clothes on (it was a Work From Home day, I don’t put real people clothes on when I don’t have to) and on to the walker so he could push me out to the car. It was about 5:45 when we got to Urgent Care. He got me into one of their wheelchairs and inside, and we waited. They took us back to a tiny little room that wasn’t big enough to turn the wheelchair around in and we waited. They moved us to a bigger room that we COULD turn the wheelchair around in and we waited.

See also: Broken/Sprained Limb = not life threatening emergency.

The doctor finally came in and did the obligatory I AM GOING TO HURT YOU A LOT BY PRESSING AND PULLING ON YOUR HURTY BITS AND ASKING IF IT HURTS torture session. Palpitation damnation! He recommended an x-ray of my ankle, which was turning quite purple by then. He seemed unconcerned about my knee, even though I told him it also hurt a lot and had been previously injured. Luckily, there was an x-ray lab onsite so I was able to get that done right away.

…Well I SAY right away, but the x-rays took forever because I fucking have ALS. Why NO, Nurse, I can NOT stand up on one foot to get on to the x-ray table. And your little 5 foot nothing ass is not going to be much help. Also not helping? Being in so much pain I’ve got cold sweats so my palms are slippery, so it takes like 8 tries . Once we managed to get me on the table, it was still a conversation about no, I can NOT just lift my foot a little to the left. I HAVE ALS MY FEET DO NOT WORK LITERALLY AT ALL. I CAN NOT FLEX MY TOES. I CAN NOT TWIST MY BODY THAT WAY, I CAN NOT ROLL OVER ON MY SIDE WITHOUT A GRAB BAR. FOR MEDICAL PEOPLE YOU SURE AS SHIT ARE NOT CAPABLE OF HANDLING PEOPLE WITH MEDICAL PROBLEMS.

We finally got the images she wanted, and then I was wheeled back to the room to wait some more. The three little Advil I’d taken had worn off their little edge-blur loooong ago.

The doctor returned in a little bit with a printout of my x-ray. “Have you previously injured your ankle?”

Confused. “No?”

He gave me a sympathetic look and handed over the x-ray. “I’m afraid it’s a fracture.” He showed me the little chip of bone that had broken away.

FFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUCCCCCCCCCCCK.

FUCK FUCK FUCK

He started talking, about making an appointment with the orthopedic specialists, about how they would splint it for me tonight in the meantime, how I was to Stay The Hell Off Of It. I asked if I could have some pain killers, maybe? and he said he’d give me a couple of tablets, sure. He left to write it up, telling me that the nurses would be in momentarily.

When we were alone, J asked if I was okay. I’d voiced my concerns about never walking again, and I wasn’t sure. Mostly I just hurt. The supercool nurse assistants came in, splinted and bandaged me up, and brought me the scrip to hand-carry to the pharmacist. I was free to go. We got milkshakes on the way home. J was amazing as usual and got me settled in and medicated and hung out with me for a little while, and then I slept.

Turns out breaking a bone hurts a lot and sleeping doesn’t make that go away. Especially when you need to elevate a limb and oh, what do you know, you have cats that like to stand on high places! WHAT THE SHIT MOLLY. I worked from home a bit the next day, I had lunch with J and my friend Eric when they brought me food, but mostly I slept. I made an appointment with the orthopedic specialists for the next day, to determine the next steps.

That turned out to be a ridiculously short appointment, because there was precisely fuck all we could do about the break, turns out. I had essentially sprained my ankle SO BADLY it pulled a chip of bone away. The chip was too small to screw back in without it disintegrating, so no surgery needed, and the damage was in such a spot that a cast would be useless. I was given a brace that hurts like the devil to wear and told to elevate, ice, medicate, until I felt like I could put weight on it.

I…guess that is the best outcome. I won’t be disabled by surgery or medical equipment, only by my tolerance for pain. For now, I’m mostly kicking it in bed with my foot propped up, mostly weaned off of the Norco, traveling by wheelchair as needed.

Oh. yah. Wheelchair. BECAUSE MY FUCKING WALKER BROKE ON SUNDAY. AAAAAAARRRRRRRRRGH.

J went out and bought my new one today. I will sticker that bitch up, too. And hopefully, soon, be using it to walk with for a little while longer.

A New Awkward

June 23, 2017 tragerstreit2 Comments

This morning, while being wheeled into work (because J is a freaking rockstar of awesome), we met up with a former coworker of ours. This woman is French, and has a super thick accent, and is very sweet. She hadn’t seen me for quite a while, and the walker was new to her.

“Good morneeng, Vashtee, are you okay? Deed you hurt yourself?”

“Oh! Hi! How are you?”

“I am good, but zees walkair, are you okay?”

“Oh. Uh.” I looked at J, who was no help. He was busy trying to get my wheels over the building’s threshold, something we struggle with every morning. “Not…really? I..have ALS.”

Blank look.

“Lou Gehrig’s?”

“I have not haird of zees ALS, what ees eet? Are you going to be ok?”

“It’s…” Ugh. What do I tell her? I’m gonna die, sorry we haven’t seen each other in awhile?
She misinterprets my struggle as reluctance. “Eet’s okay, you don’t ‘ave to talk about eet, eef you don’t want to.”

“Oh, no, no.” I settle for, “It’s a degenerative disease, I’m losing my ability to walk.”

Even that slice of information makes her sad. And it’s awkward. A new kind of awkward, a language barrier, subtleties of tone and subtext kind of awkward. Usually if someone doesn’t recognize the names of my disease, I can say, ‘neurodegenerative’ and they infer the ‘terminal’ part by tone and expression. And then we move on. But she doesn’t understand, and I don’t want to be so crass as to just cheerfully say “I’m dying” as I do with folks I know better, but there aren’t better and simpler words that are gentle. So I leave it there.

Delivering news of a terminal diagnosis is hard. I have complete empathy for doctors, this has to be the shittiest part of their job. But when the diagnosis is yours, and that relative/friend of the patient is a dear friend/relative of yours, not just some professional duty, it’s harder. It’s a strange and terrible combination of delivering devastating news and divulging a horrible secret. And watching the parade of emotions cross your faces, the ‘holy shit this is awful but this is HER dying so I can’t be selfish and grieve on my own behalf I have to be strong for her and not let it phase me but holy GOD, man I can’t believe she is DYING but she’s standing there looking like she’s sorry for ME..’ That part doesn’t get less awkward.

The worst time was when I told Danielle. She started crying, and when I reached over to comfort her, she brushed me off, dismissing her tears with a headshake and “It’s not about you.” I still don’t know what the hell that was supposed to mean. But I never asked.

Delivering the news hasn’t gotten easier. I’ve gotten better vocabulary, gotten a smoother delivery, but telling someone who has English as a secondary language was an all new difficulty level for me. It was an interesting experience.

A new level of awkward.

ALS : FTS

Seriously, Fuck This Disease.

Author: tragerstreit