…was not at all! I’d totally forgotten that like, HALF of my guys were out today, so I’m going to bring it up next staff meeting.
…was not at all! I’d totally forgotten that like, HALF of my guys were out today, so I’m going to bring it up next staff meeting.
I have committed and embraced the Walk to Defeat ALS in Portland. This is a thing. It’s happening. As my team is called The Godzilla Squad, it was suggested (jokingly) that we could all get these:
I thought that was basically the best thing ever. I said I TOTALLY needed that. Though, that thing is like $75 and I didn’t really mean that; hahahah how would I justify affording that, no matter how awesome it was? Someone suggested that we make them our team costume, which I agreed would be awesome and hilarious. And then my darling friend Leendah said, “How many do you need and when?”
…I had almost forgotten that Leendah is a kickass costume designer in real life.
Long story short, she is making dinosaur hoods and hoodie sweatshirts for my team at cost.
And the amazing kept happening. People I have not seen in literally a dozen years have signed up to walk with me. My friend Marina not only donated to the walk, but offered to sponsor two people walking with me who wanted hoodies but couldn’t afford the $50. My team is already 8 people strong and has raised $450. That’s….amazing. Seriously, seriously amazing.
There are going to be two talks here at Intel, to recruit for the walk and to just flat out solicit donations, and I’ve agreed to speak at both of them. I am apparently the only person with the disease (that the ALS Association knows about) who currently works at Intel. It’s one thing to say “please give us support in the name of this guy who used to work here and has died”, but it’s another to say “Hi. I work with you guys. You might have seen me in the halls, even, I’m kinda stand-outy. I have this disease, it sucks, please give us a hand.” I’m hardly a Fundraising Warrior or anything, and I’ll never be a marketer even for this – I’m not built for it at all. But if my voice can help out, then I’ll use it towards this goal, while I can.
Tomorrow, for our team staff meeting, I asked my manager for permission to tell the team about it and see if any more of them wanted to join me. I’m not really asking for money, and it won’t cost Intel anything, so he said okay. I’m nervous about it – I’m not good at asking people for something, as I’ve said, but I also realize that for a fair few of them, it will probably be the first time they’ve heard about my disease. And that I have it.
So THAT will be interesting. I am hoping it’s a positive experience with a minimum of awkward.
This is not at all how I imagined my life would turn out to be. But I have to say, I’m not entirely discontent. Some fucking AMAZING people have come out of the woodwork, and my disease has given me some unique opportunities and put people in my orbit that wouldn’t have been there otherwise. I’m really very grateful.
As usual, babies, I’ll tell you how it went, tomorrow.
There was another way that yesterday was ALS-centric, and it deserves its own post.
I gave blood yesterday. The Red Cross comes to my work every two months or so, so I really have no excuse to not go down there and bleed in the parking lot for an hour. I’ve been deferred a few times for low iron count, but since I take the supplements daily now, it’s not been a problem. I made it past that screen, and picked a bed.
I had to wait awhile, because another coworker donor was having a bad time. Like, “could not stand up without nearly passing out” bad time with an emesis basin and everything. He was insisting he had to go to the bathroom, they were insisting he lie the fuck down until his color improved because they couldn’t have him passing out in the parking lot. While listening to this, I was thinking about how it’s strange that some people have that reaction. And wouldn’t it be weird if he was actually having a reaction to chemical fumes or something in the bus and not wobbly reaction to losing blood at all.
Cue a panic attack for NO reason at all.
I laid there for five minutes, dizzy and nauseous and not breathing very well, willing myself to CALM. THE FUCK. DOWN. It wasn’t really because I thought there were fumes on the bus, but I told myself IF THAT WERE TRUE THE NURSES WOULD ALL BE SICK, THEY’VE BEEN ON THIS BUS ALL MORNING anyway. Maybe because I was mortified at the thought of having a problem at work that might require ERT? I’m not sure. None of my thought trails led to further freaking out, except the FACT that I was freaking out very quietly. I CAN’T BREATHE. Of course you can, idiot, calm yo shit. I AM GONNA PASS OUT. No, you’re not, you’re fine, and even if you did, there’s nurses here, so so what. I AM GONNA THROW UP. No, you’re fine. Cheesy Christmas, woman, chill. I’M FREAKING OUT. Well, yeah, but you KNOW that, so what’s the actual problem? UH..NOTHING I GUess okay I think I’m okay.
The phlebotomist finally came back around to me, got the needle started, and as I usually do, I let my mind go wherever it wanted. And then a quiet voice spoke in my head.
Idiot, you have a terminal disease. Should you REALLY be donating blood?
While I bled into a bag, I looked things up on my phone. There are a couple of hospitals which have a policy against people with ALS donating blood. There’s a forum with someone asking about donating organs or blood, and some jackass going off on them about how they’re APPALLED YOU WOULD EVEN THINK THAT WAS OKAY FOR FUCK’S SAKE YOU HAVE A TERMINAL DISEASE AND NO IDEA WHY IT HAPPENS YOU ARE LITERALLY POISONING PEOPLE IF YOU DONATE YOUR DISEASED PARTS YOU EVIL SON OF A BITCH. Which is why I don’t go to forums usually. There was NOT, however, anything on the Red Cross site or anywhere on the web that said no. Blood donated to the Red Cross doesn’t always get transfused, it gets used for research and medicines, too, and I don’t know if that means even if my blood can’t go in to a person, could it be used for medicine?
I finished bleeding, they gave me the standard spiel, call this number if you experience any flu-like symptoms in the next 7 days, or think of anything that might mean your blood shouldn’t be used, go eat some cookies and have some apple juice.
I finished up in there, and called that number later. The nurse on the phone didn’t know if it was against the rules for ALS people to donate, she couldn’t find out anything that said no. She would do some more research, though, and call me back or send a letter.
We don’t know what causes ALS. It’s not contagious, as far as anyone knows. But we don’t know a lot about it, and I’m not sure it’s a good idea. The Red Cross will be the final authority, of course. I’m sad about not being able to help out this way anymore, it’s a simple, easy thing to do and it can be tremendously helpful and they ALWAYS need people and I’m O+ so 85% of the population can be given my blood.
Unless it’s tainted.
Yesterday was a very ALS-centric day.
Some days I kinda forget I have it. Some days it’s in my face. And some nights it breaks my heart. It’s okay, it’s just going to be like that. This is my life now. It’s not necessarily bad, it’s just …different.
Almost a month ago, the group leader for the American Veterans employee resource group at Intel reached out to me, asking if I would be interested in being involved in an event they were creating. For some reason, veterans are TWICE as likely to get ALS, and for this quarter, his group is working to promote awareness of the disease. I said I’d be happy to, and yesterday they had a table set up in our cafe. I went down to meet him in person and talk a bit, and there was another person manning the booth that actually had ALS.
Mannnnnnnnnn did that guy talk. And have opinions. When I told him how my symptoms were presenting, how for now I’ve just got trouble walking and use braces, he cut me off with, “That’s not ALS. That’s Primary Lateral Sclerosis. You need symptoms in both legs AND arms.”
“…which I HAVE,” I told him, and was ABOUT to tell him if he’d let me finish. “Stabs and shocks showed weakness in my arms, and I’ve got hyperreflexia in my jaw.”
“Oh. That’s ALS,” he conceded.
…Dude. Just because you HAVE a disease, you don’t automatically get more knowledge and authority than the neurologist that diagnosed me. Specially not Dr. Goslin. He also said it’s pretty much guaranteed that I’ll be suicidal sometime, but “don’t make any decisions at midnight. And don’t look at the computer after dark. Wait until the morning, things will look better.” I’m not sure about the “you will be suicidal” bit, but…yeah.
The two of them were promoting awareness about ALS, and recruiting people for the Portland Walk Against ALS. I got talked in to forming a team. I’m…not good at asking people for anything, much less money. This is important, though, so I’ll do it. And I am. Here!
After a lot of thinking, I went with The Godzilla Squad as a team name. My other favorite suggestions were “The Walking Not-Dead-Thanks-For-Asking”, “Wokka Wokka Wokka”, and “Bracing for A Cure!”
I was kind of overwhelmed by that guy manning the booth, specially as later that day I was going to attend the first support group. Good god, what if the whole meeting is like this? I mean…really nice guy! Knew a lot! But …overbearing and a little argumentative? I’m a pretty meek person (stop laughing) in real life and he just kind of bowled me over. So I had a little trepidation when I left work for the support group.
I arrived craaaaaaazy early. Danielle met me there, and we snaked out for bubble tea before the meeting started. She has the best ideas. There were not many people there at first, though eventually there were about 20 of us. There were two people in chairs, a couple with canes, and one with this awesome walker thing that I’m gonna try for when things get that bad. It had a built in seat and brakes and everything! The idea of walking around with a guaranteed place to sit down when I got tired is AWESOME. He was pretty funny, too. One of the men in chairs had his wife and caretaker with him – he had slurred speech and a great attitude. He presented everyone with a list he’d compiled himself of how often Medicare replaced components on CPAP/BIPAP machines, because it’s not something they ever TELL you. I’m sure the laws will be different by the time I need that information, but it was awesome that he had taken the time to dig that up and present it to the community at large.
We went around and did introductions, of course. I found out that out of the maybe 8 of us with ALS in the room, 3 of us had been diagnosed in April. What the hell. I introduced myself, and told them that Danielle was amazing and wonderful, and she got a little misty. heh. What I FORGOT to say, was “You bitches have NO IDEA how much of an asset you won through my diagnosis. Danielle and I are both power planners, but she is ALL about the marketing and the data gathering and the everything. She is amazing and you are lucky to have access to her.”
The meeting was an hour and a half, but the bulk of it was dedicated to a show-and-tell with assistive devices. They showed everyone what AFOs were, and talked a little bit about options. Several of us had them, and we talked a little bit about our experiences with them. We were showed a power chair, and they talked at length about all of the options available with the seat cushions and controls and front vs rear vs mid drive. I had NO idea you could recline those things until you’re practically prone. I mean, it makes sense that you COULD but it never occurred to me. The two gents with the chairs happily demonstrated their capabilities. It was really informative, but I wish we’d had more time to just chat. Maybe the next one. I may not be able to convince my boss to let me go monthly, but maybe every other.
We had to bug out a little early to go to my therapist so Danielle could meet him. And then we went to a French bakery and had a delightfully snooty waiter (“We’ll take the cheese plate.” “No. Take the brie.” “”..okay, we’ll have the baked brie.” And his suggestions were all on point, but we disappointed him by not liking chocolate so we didn’t go with his dessert suggestions.) and some fancy delicious food.
And it was a really good day. I wasn’t crushed under the weight of what my future holds, it was actually good to see people in more advanced stages who are still doing just fine, thank you. It was nice to talk to a therapist with my primary caregiver to make sure we understand expectations (which really amounted to, I need to get over it and let people who love me do nice things for me). It was nice to volunteer to participate in the walk (teasingly coerced though I was). I hope that all goes well.
But overall? I was reminded again and again and again that I have a terminal disease, and it’s going to cause a lot of complications, but I felt like…it’s okay. It’s going to be fine. I really felt like I have a handle on this for now. And when I don’t, I have people who will step up and help.
I received a jury summons in the mail yesterday. Boooooo. I don’t want to sit on a jury! I have a friend who loves jury duty, but he’s crazy. (edit: I have, apparently, MULTIPLE friends and they’re ALL crazy) If I’m selected, I might have to deal with horrible people having done horrible things, and I have a really hard time dealing with suffering. I can’t watch horror movies – it’s not the gore that freaks me out, it’s the suffering. I’m far too empathetic.
I have a chance, of course, to ask to be excused. The most common way is to declare hardship; “I can’t afford to be off of work this long”, “I have no daycare for my children”, “my job is under deadline and it’s critical that I’m there”, etc. My employer is awesome enough to pay its employees for serving on a jury. I won’t accrue vacation time while I’m doing it, but I’ll at least get paid to sit there, regardless. So I can’t declare financial hardship. I don’t have kids to take care of. And “I don’t want to” is not a valid hardship.
But. A friend is egging me on to say, “I have a terminal disease and I don’t want to use any of the time I have left doing this.”
Which….is valid. Totally.
But it feels like a cop-out. I mean..yeah. Dying, limited time, etc. But, I’d be sitting at WORK if not in the jury box, so …..net time lost is zero, really. And money made, regardless. So, in the grand scheme, it doesn’t actually matter. But at work, I can feel like I’m being useful and screw around on the internet while I’m listening to meetings that don’t really matter. On a jury, I have to pay attention.
I’m likely worrying about nothing. In ALL the times I’ve been summoned, I’ve never had to actually serve.
….and because I just said that, I’m totally going to have to. Hopefully it will be a theft and not rape or murder.
What do you think, Hive Mind? Should I try playing the ALS card to get out of my civic duty?
I’ll be in a wheelchair someday.
This is just fact. It isn’t sad or depressing, maybe frustrating because I’m powerless to do anything about my own impending powerlessness. For now, I’ve got braces on my legs. Then probably a cane, and then probably those crutches that have the arm bands. I’m sure there’s a medical name for them. Hang on. Lemme Google that. They’re called “forearm crutches”. Well, that’s disappointingly obvious. There are some pretty cool looking ones tho. ANYWAY. Tangent. Sorry. After the crutches will be a wheelchair. Maybe a manual one because my arms are still really good, and maybe not, but certainly, inevitably, an electric one. Vrooooooom.
Even before my diagnosis, when I was losing the ability to walk, everyone told me “you’ll have the coolest wheelchair EVER” and “You’ll have the pimpenest cane EVER”. And I really, really plan to. I joke about cards in the spokes and streamers, but dammit, if I’m gonna sit in the fucking thing forever, I’m going to make it a comfortable and classy ride. And if I’m going to carry something around with me everywhere I go, it IS going to be an awesome cane.
A dear friend of mine was having his own sudden health crisis, and he showed up to work with a cane. He commented that it’s a lot harder to walk with than you’d think. I don’t doubt it. With every step of this progression, I am having to relearn how to walk. I had to learn to be more conscious of my foot drop so I didn’t trip over things. With the braces, I’m having to learn to trust them not to break and not feel like I have to stoop over when I walk so I don’t lean on them. They’re so lightweight and springy I feel like they’ll snap, but carbon fiber’s pretty hardcore and as long as I don’t go all Portal with them, I’ll be fine.
In said friend’s post, a friend of his commented that he hopes my friend got a really cool cane. And since my friend is a musician, he linked this one:
….WHICH IS FUCKING AWESOME.
And of course, because etsy is already one of my favorite wastes of time (as evidenced by the number of things from etsy on my Amazon wishlist (thank you very much Amazon for making that feature because it is awesome (okay I think that’s enough parentheses (no, we need to go deeper (ok seriously I’m done (let’s see if I correctly close them all out))))), I poked around on that sire awhile to see what kind of cane I’d buy for myself, if I needed one right now. And I have a lot of options, just from etsy alone. I’ve learned a couple of things.
But there are really good ones out there. A lot of solid, dependable, suited-to-the-purpose-without-being-medical-looking ones. If I had to get one today, it’d probably be either http://etsy.me/1xErFHy or http://etsy.me/1qoL3Ds . Or both. One for dailies, one for Sunday best. 😀
Outfitting yourself with a cool accessory is a powerful coping mechanism, I’m finding. I feel SO much better about my pills and pills and pills since I made the apothecary shelves with them. OH!! I haven’t showed you that lately! I have Apothecabinet Mark II now. Separate post. Yep. It’s like consoling yourself to go through chemo by thinking about all the awesome wigs you can get and have a different hairstyle whenever you feel like it. I have to take a lot of damned medicines, but I feel better about it dispensing them all from little awesome jars. Yeah, I’ll have to walk with a cane eventually, but it’s gonna be an awesome accessory, besides being functional.
My chair will totally have metallic glitter paint and stickers.
Dr. Goslin’s sidekick, the amazing and trusty Donna, emailed me this morning.
“Cigna denied the prior authorization request for Athena. Dr. Goslin did a peer to peer review, and they still denied it. It is unfortunate that this got dragged out so long, only to have them deny it in the end. I am sorry.”
Athena, of course, being the company that does the genetic testing. We were going to see if I had the markers to allow me to participate in the bulk of clinical trials going on. And Cigna said no. Even after Dr. Goslin explained to their faces why it was important. And it IS important.
I feel defeated. Like…this test? And the ability to participate in the best research going on? It gave me hope that maybe my fucking disease might be USEFUL to someone. We won’t see a cure for this in my lifetime, but goddammit I wanted to be a datapoint at least in GETTING there. I want to HELP.
I don’t know how much the test costs. The last one was nearly $12,000. So yeah, I won’t be able to just DO the test on my own. I am beyond frustrated. I am angry, defeated, disappointed, crushed, depressed, all of this and everything else.
I want this fucking disease to mean SOMETHING to SOMEONE. To get SOME good out of it. To be useful.
And now instead of having the chance to be a data point, I’m relegated to be a statistic.