One thing I love about being one of Dr. Goslin’s goslings is that she is super, wicked smart and stays on top of the latest research. Any time someone sends me an article about some new breakthrough or other, I am completely confident that she has already seen it and researched it to pieces. The upshot of this is that, when she suggests I try something, I know it’s a very well-considered proposal.
In our last Clinic Day, she told me about this article. Massive megadoses of B12 have been tentatively shown to maybe possibly potentially help with some of ALS’ stupid symptoms. She gave me the article, asked me to mull it over, and let her know if I’d like to try it.
Roadblock number one? Insurance won’t cover it. She told me it ran between $250 – $300. I could either get it in a vial with needles, or pre-filled needles, for more dollars. Now, I can manage to afford that now, while I’m unemployed, but when I’m not? Sucks to be me, if it works. I had me a nice angry meltdown on facebook about how stupid that is, sulked, and researched some more. My friends assured me that if it worked, they’d help me fundraise to get it, so don’t let that stop me.
Roadblock number two? Self. Administered. Intra. Muscular. Injections. Now, I’m tattooed, have multiple piercings, I am in NO fear of needles. But I didn’t know that I’d have the nerve to stab myself every day in the thigh. In the morning! And then there was the problems of mechanics, having enough hand control to push the plunger in. So, a mental AND physical challenge.
I decided to try; they recommend one month at least. I decided to go for it all three months until next Clinic, and I’ll likely still be employed all that time to afford it. I sent Dr. Goslin an email, she gave me the prescription, and thus began the Wacky Comedy of Errors. Holy crap.
First of all, only several pharmacies compound the stuff. For some perspective, the average over-the-counter supplement is 2.4 micrograms. This injection is 25 MILLIGRAMS. That is more than TEN THOUSAND TIMES the dose. Understandably, there’s a limited number of folks who make it that strong. So I had to *gulp* CALL A PHARMACY. IN PERSON. They got the prescription from Dr. Goslin. Then they called me to get my personal information. Then they called me back with pricing. A vial of it would run me $215, plus $30 shipping because it has to be kept refigerated and mailed cold. Oh. But they can’t ship it to Oregon; they’re not licensed to ship there, did I know someone in California or somewhere I could have them ship to, who could forward it to me? For another whatever-it-costs for overnight shipping to keep it cold? LUCKILY I have my dear friend Amanda in Vancouver, which is not so far away, and she was happy to recieve the package on my behalf AND dose it out into the syringes for me. Two days later, she got my vitamins.
With no syringes.
No big deal, she went to a pharmacy. …Who would not sell her any without a prescription. They gave her 4, though, so I could get started while I waited over the weekend for my doctor to send in a prescription. Doc Goslin was in a conference, turns out, so she turned the task over to her nurse, who mistook the instructions and sent in a scrip as though the injections were WEEKLY, so they only gave me 11. And to the wrong pharmacy, but that wasn’t her fault, DocGos didn’t tell her that part of my request. So I sent in an email to get it corrected and to the right pharmacy, only insurance now wouldn’t cover it because I was trying to fill the scrip too soon. You’d think the fucking things already have heroin in them, with how hard it’s been to get hold of some. FINALLY we’ve got it sorted and I can go pick up the rest of them tomorrow.
I started the shots a week ago. You have to keep it refrigerated, take the shot out of the fridge 20 minutes prior to administration, and keep it in a dark place while it waits, because B12 is light-sensitive. And THEN you may stab yourself. It took a couple of tries, mind you. 1mL is a LOT of liquid to get in there. The initial stab isn’t bad, unless I hit a nerve, but sometimes it takes some doing to get the plunger all the way in. And sometimes some of the liquid comes back out when I withdraw the needle, which sucks because it’s a blood red liquid that stains. I was warned that it gets metabolized quickly, and I’ll pass whatever doesn’t get readily absorbed, so my urine miiiiiight turn reddish or pink.
It totally does. So, thanks for the warning.
I haven’t noticed a difference in anything yet. I’m still experimenting with where to do the injection, as there’s not a LOT of muscle left in my thighs, and it’s blanketed with fat. Shooting my bicep though, feels like an immunization shot and leaves my arm sore all day. I’m sure it will get easier. It’s still taking one or two false starts before I manage to work up the nerve to stab myself though.
I’m not sure what I’m hoping for, with this. If it does something, then I’m tethered to $245 payments a month out of pocket. And eventually finding someone to stab me with a needle every day. If it doesn’t, then I’ll be out a lot of money with nothing but soiled cupcake band-aids and self inflicted puncture marks to show for it. I mean, of COURSE I’d like it to do something, even if it does mean weighing the pros and cons of perceived improvement vs. cost and hassle.
I guess I’m just saying, this disease complicates everything. At all times. For everyone. It really SHOULD come with a secretary and a kitten.
And someone to do the shots for me.
So! I had a follow up with Dr. Goslin about all the things that came up from clinic day, notably meds changes, follow up with the physical therapist, and a general check-in. I found that I had lost 5 pounds, which I am not at all unhappy about. She was unconcerned about that, telling me as usual that maintaining my weight is important; as long as I’m not dropping weight quickly it’s not a problem. Even though I miss being 60 pounds lighter, I suppose that will come in time, and that will be a problem. But until then I am fat and alive.
As far as the physical therapist goes, we didn’t find any braces that helped more than the ones I currently have. Most of them actually exacerbated the problems, particularly on inclines and declines. Instead we’re going to look into some sort of knee brace, as my knees are usually what fails when I fall. We’re thinking some sort of neoprene brace with metal supports; maybe that won’t make it quite so meat-stilty when I walk. We will see. Basically anything that keeps me walking as long as possible is a good thing, in my opinion. Ideally, also not tripping over the cats would be good.
Regarding the meds conversations, we had started me on something to help with the… er.. accidents… And something to may be kickstart the antidepressants again, as they didn’t seem to be doing a whole hell of a lot lately. Lab bladder control made is working out awesomely, we’re going to slightly increase the dosage on that. The other med doesn’t seem to be helping but it also doesn’t seem to be detrimental, so we are going to slightly increase the dosage on that. Maybe we’ll get a reaction. We are also increasing the dosage on Nuvigil, to see if we can’t kickstart my energy levels some more. In that same light, we are decreasing the gabapentin because I’m not sure it’s doing much of anything anymore, and it’s known to cause drowsiness, and I really hate taking something three times a day. Hopefully I can taper off that altogether. The antidepressant kick starter was also prescribed hopefully to reduce the migraines; I haven’t had one in a couple of months and I’m not sure if that’s working, or if it’s just that the Botox is no longer in my system.
Related to the headaches, we had a conversation – again – about the Cefaly device. When she had first talked to me about it, she had explained that she KNOWS that it looks like snake oil and seems super fake. (Seriously so fake.) The science she assured me, was sound and it had potential to be effective. Since then, she had actually tried the device and bought a few for her patients to try; a few of them reported up to 50% fewer migraines. It worked so well that none of her patients have returned it. So she wrote me a prescription for one, and almost $400 later, it should be arriving soon. The crappy part about it is that insurance will not cover it so this was out-of-pocket. Expect future updates when I finally get my hands on it. LIVE FROM THE FUTURE WITH MY SPACE HEADBAND OF MIGRAINES -2 !
We also spoke about medical trials. She hadn’t been able to attend the research symposium, so I told her about my conversation with Dr. Beckman and how frustrated he seems with his complete lack of progress. She shared my sense of dismay and agreed that an actual trial is probably not forthcoming anytime soon. HOWEVER, she told me, there was ANOTHER trial about to start. LITERALLY about to start. Like, in August. She was positively geeking out about the potential for this trial, super excited about the potential, and in fact said she felt BETTER about this than the copper trial. It’s centered on inflammatory behavior with ALS degeneration; previous trials had stopped the progression of ALS in patients with those inflammatory markers while they were taking this drug. Only 35 percents of ALS patients have those markers, though. It’s an IV administered drug, and a six-month trial; I think she said five visits for the first two months and three visits a month for the rest of the duration. I’m not exactly sure what it entails in detail, but I suppose I shall find out if I am selected for this trial. Because of course when she asked if I was interested, I said HELL YES. The trial coordinator is supposed to be giving me a call very soon to give me more information and arrange to have me tested to see if I have those markers.
So THAT’S exciting.
She also suggested, which in retrospect seems OBVIOUS, that I go to the physical therapist to learn how to fall gracefully, and how to get back up. It’s the getting back up that’s the problem, usually. So I’m going to go do that. Soon. In the meantime she gave me materials about various “med alert” type devices. Which, I realize I really SHOULD be looking into, but every time I think about it, the phrase “I’ve fallen and I can’t get up” also goes through my head. It’s one of those stupid associations, one of those steps that feels like surrender, no matter how practical and ultimately necessary it may be. I’m working on getting over that.
So that’s the haps. You are now fully updated. I’ll make a goofy video once I get the Cefaly. I’m sorry I haven’t been updating lately, the world those outside and inside has been in that sees stupid, dramatic, and sad. So I’ve been in full out capital avoidant mode, sitting in bed with my cats eating candy and watching nature TV. It’s so much easier.
I hope life is treating you kind. I hope you are safe, and happy.. And I hope it stays that way.
Clinic Day! Also, should you send me that article about ALS? (Spoiler alert: yes you should) Promising research! How my disease is progressing. And some VERY EXCITING NEWS. Like, I am nearly in tears for pretty much this entire video because I am going to lose my shit I swear to God you guys.
Seriously look at this thing and tell me it does NOT look like crystal gazey fake woo-woo pseudoscience:
On the virtues of being a data point instead of a statistic.
There will be a video from me, also, probably tomorrow night. I have a followup neuro appointment tomorrow so I’ll have things to report maybe. Definitely have things to talk about.
While you wait, GO CREATE YOUR ADVANCE DIRECTIVE.
Sorry it’s been a bit of time; life has been…interesting. Last Monday I had a Clinic Day. My brother Gecko kept me company. It went like this!
Appointment 1 : Respiratory Therapy
I’m grateful that this was the first one. This one sucks the most. It involves inhaling as much as I can, and then blow out hard and fast into a plastic instrument, and then…keep exhaling. It’s like… I don’t even know what it’s like. It sucks. Try it. Inhale as much as you possibly can, plug your nose, and then blow out hard and fast and keep exhaling for like, a count to five. Feel light headed, don’t you? Now do that two more times. While someone is yelling at you to keep going. She gave me a little plastic clamp to go over my nose while I exhaled to make sure that no air escaped that way. “You are Master of the Nose Clip,” she pronounced. I’ll try very hard to live up to the title and not abuse my newly granted power. In the end, she pronounced my breathing was healthy and normal (yay!) and gently admonished me for not doing the breath-stacking every single night. She didn’t seem to care that I wasn’t using the CPAP after I’d moved, but I ought to.
My brother has video of me doing the breathing exercise. I have to be nice to him from now on or he’ll publish it.
Appointment 2 : Speech Therapy
This appointment was to make sure my swallowing and speech was still as normal as I felt it was. She watched me eat a shortbread cookie, and drink a swallow of soda. It’s weird to have someone watch you intently while you eat, and weirder to have them put their hand on your throat to feel you swallow. It’s like..you start to wonder how you normally do it. But I passed her tests and was pronounced normal. Hooray for me.
So the two things that will kill me have not started to happen yet. This is good.
Appointment 3 : Neurology
Dr. Goslin was out, so I saw her colleague instead. She was very nice and knowledgeable. We ran through the normal strength tests, which she pronounced good, but yes, there is weakness in my hands, but the PT person would know better about that. I’d started a conversation with Dr. Goslin to maybe FINALLY work out what’s been causing my daily headaches for the last oh, 25, 30 years and part of my time with Dr. Sax was spent continuing that talk. Dr. Goslin and I had concluded the next step was going to be to try amitryptaline, which is not only can prevent migraines (yay!), but might help with the daily headaches, and also was a mild antidepressant, and ALSO might help me sleep. (sidenote: holy crap has it ever, but that’s another post) We were taking me off of Wellbutrin last time, and we didn’t want to start a new one until I was off of that. So we put that scrip in. I was disappointed I didn’t get to see Dr. Goslin, but she’d been on call all weekend and I totally get the need for a freakin’ day off. She’s got a lot going on. I was also directed to get another blood check to make sure Rilutek isn’t eating my liver (it isn’t).
Appointment 4 : Social Work
Rachelle the Magnificent was my social worker for this appointment, and she had in tow the new director of Assistive Technologies. We had a talk about caretakers and resources, and a lot of other things that gave me much to think about. I fortunately have a lot of time for things, and can coordinate a lot of it myself, but I really do need to have things officially in place sooner than later. We talked about a follow up appointment so she can see my new apartment and see its accessibility. Gecko had some questions of his own answered. Yay!
Appointment 5 : Physical and Occupational Therapy
The two women I worked with in this session were familiar faces, one of them being the PT I was seeing while we were trying to figure out what Godzilla Disease really was. We measured my strength some more, which was predictable results: feet are nearly useless (I can only juuuuuuuuust wiggle my big toe now) and they tend to turn in at the ankles because my tendons are tightening up due to lack of stretching. There’s no muscle there to pull them to stretch. I have a manual stretching exercise that is supposed to help somewhat. Calf strength is going, thighs are still strong. 5s all around on the upper torso, except my left hand. She had me stretch my fingers out and resist while she tried to pinch them together, and they weren’t able to resist much. I still have full range of motion, but there is a measurable loss of strength there – 4 of 5. I am in an every day fight to not let this freak me out. She watched me walk down the hall with my braces on, and with the walker I was borrowing from the ALS loan closet. She agreed I am MUCH more stable with the walker which, on the one hand? No duh. But on the other hand, it’s nice to have it confirmed that I not only FEEL more stable, I AM more stable and less likely to fall.
The occupational therapist measured my grip strength (again, doing something hard while a woman yells at you HARDER! MORE! HARDER! is a surreal experience). She asked about my struggles with daily tasks I’d noticed popping up, and I was making a considered effort to be open and honest and accepting the help she offered. I admitted the toilet in my apartment is CRAZY low (seriously other people have told me so, too) so she offered a toilet frame with bars I can use to haul myself up. I said okay. She offered a shower chair. I said okay. The Zombie Tramp house had a seated shower, so I hadn’t needed such a thing before, but I accepted this for my new place. I don’t need it yet, I can still shower standing, but I lean against the wall when I do. A chair might be easier. She also gave me a couple of pieces of something called Dycem (registered trademark) which is a flexible grippy plastic sheeting that I can cut up and put where ever I need extra grip, like a piece across the back of my phone so I can hold it easier, use a piece to grip jars to twist them open, wrap a glass in it so I don’t drop it, etc. She said once I start using it, I’ll find a million uses for it. She’s probably right.
Appointment 6 : Nurse
The nurse on staff is a lovely woman, I like her a lot. She was basically just there to tell me that if I needed them, they were always around. She gave me the wrap-up paperwork, and said that after the next and last appointment, I was free to go.
Appointment 7 : Registered Dietician
You know how when the dentist asks how often you floss, and you lie, and you both know you’re lying? Yeah I was avoiding that with the dietician, so when she asked how much water I drink a day, I admitted that no, I don’t drink water. At all. I hate the way it tastes (water does TOO have a flavor). I also admitted that I eat like crap and don’t eat breakfast usually, unless you count an energy drink as breakfast, heh heh.
She does not.
There’s not a lot of dietary advice that comes with ALS, because you’re pretty much encouraged to eat whatever you feel like and don’t try to lose weight. She made me promise to swap out ONE soda a day with a glass of water instead. And for heavens’ sake, EAT SOMETHING FOR BREAKFAST. She gave me a cookbook of easy to chew, easy to swallow foods, which she said I do not need to take now, but it has really interesting information about what physically goes on when you swallow, and some other tips in general. So I went ahead and accepted it now, even though I absolutely do not need it yet because my swallowing is fine. It has a recipe for stroganoff in it though, and it made me really want a good beef stroganoff. mmmmm.
And then, after stopping in the lab for the blood test, I was free to go!
No surprises. I’m happy to have it medically documented that my breathing and swallowing are still fine. I’m discouraged about the hand strength loss of course. By ‘discouraged’ I mean ‘freaking out’ but I’m learning to cope. I have a lot of people around to help me out and so far my typing is still awesome. So as long as I can game, we’re good. I’ve since started the amitryptaline, and it is KICKING MY ASS. I have been sleeping SO HARD the last two days, and it’s near impossible to wake up. I hope that evens out. We’ll see. My blood test came back fine, my liver is not imploding. Yay. I have a followup with Dr. Goslin in August, and my next Clinic Day is in November.
So that’s the update!
I attended a symposium on ALS research today. As a result, my brain’s kinda full. Full of information, full of renewed energy to be a part of the solution, full of the obligatory introspection.
Oh, introspection. The knee-jerk “how does this all affect me” reaction to Serious Things.
So I apologize if this point is disjointed. My brain is random today and I’d really like to write up a full thing about the symposium and everything involved with it, I know that I probably won’t be arsed to do it. So instead, I’ma just barftype what’s on my mind. You’re warned. Two things come to mind, though, two main ideas that went through my brain repeatedly as I listened to three very, very smart people talk about advocacy, research, and a promising drug therapy, in their turns.
One? Thank god for science. Jeebus Christmastime flapjacks. The third speaker, specially, spoke about laboratory mice and their contributions, and the second spoke about stem cell therapy involving foetal spinal stem cells. Both highly controversial. Live animals, dead babies. Dead *potential* babies, I suppose, depending on your beliefs and politics. I don’t care to get into that. What I DO care about is how fucking USEFUL these research methods are, how sometimes really horrible things produce really amazing and life changing things, and how every day those decisions must be reevaluated. “Sacrifices must be made” is such simplistic bullshit, but I can not fathom how we’d get on without some of the amazing research and therapies and information that comes out of doing things not everyone agrees with.
I firmly believe that even the most staunch OMG DED BABIZ U MURDRER SINETISTS BASTURDS protester, if diagnosed with fast progressing ALS and told “there is promising research that may lead to a halt or reversal in your symptoms” will probably suddenly think that well, okay, maybe just ONE dead baby. That would be okay. One dozen babies in my spine to keep me walking and alive suddenly doesn’t seem so bad, I mean…Just as “NO YOU MUST LIVE WITH WHAT GOD GAVE TO YOU” might think differently about assisted dying. Until you are personally affected, until the decision could conceivably have some import to you personally, your opinion doesn’t carry much weight. You really, really don’t know, CAN’T know, what you really believe until it’s challenged and you face some really fucked up choices. While you’re safe from the consequences of that decision, you probably shouldn’t be allowed to make decisions for people who ARE affected. I’m looking at you, old white guys making reproductive rights decisions for women. And you, PETA person. If your kid had cancer, and I told you that 2000 mice have to die in order to give your kid a chance to live? I bet you’d be suddenly less enamored of mousey rights. Maybe skip the hypotheticals and ask people who actually DEAL with the consequence.
*stepping off the soap box*
Oh, idea one point five – saint preserve us from everyone who has “read an article”. Especially off of the internet. You guys pipe down, too. The three panelists do this for a living. They’ve probably read that article. There’s a reason it’s not called out in the slides.
Point two, and the main one, is amazement at the sense of community with ALS peeps. I have met, and kept in touch with, and care about, people I’d never in my life have met otherwise. I’m antisocial (despite what Danielle says (or at least highly socially avoidant)) and it was a bit weird to come to the symposium today and know some of the people there. Simply because we’ve been similarly touched by a disease. Nothing else in common. Just..yeah, I have this disease too, ain’t it shit? Diagnosis comes with an education, and ALS particularly comes with a community. People I see so infrequently, and yet we have something that connects us on a level that no one else could possibly share.
I learned today that a disease is considered “rare” if less than 200,000 Americans have it. The number thrown around for ALS is usually 30,000, but I also learned today that the ALS registry puts it at more like 12,000. That’s really not many. My employer has 17,000 employees in my area, for example. All Americans with ALS are outnumbered by people working in one metro area for one company. So when you find someone else in your area that even remotely understands, you take note of that person and make an effort to keep them around. There’s nothing like being able to share on a deep and intuitive level what you’re going through. Because even though other people might understand on a theoretical level, it’s a completely different thing to find someone that you can just make eye contact with and say, “Fucking ALS.” and they say “yeah.” and …yeah, to their very SOUL they know exactly what you mean. Because fucking ALS. And because you know how shitty it is, you feel similarly compelled to help someone else in the same position to make their situation suck less. So you stick together, and exchange ideas, and cry for each other, and celebrate the triumphs of perfect strangers with whom you only share one horrible, horrible affliction.
So I guess I have a better understanding of why Harry Potter/Supernatural crossover porn forums exist.
There’s a book called “Miss Peregrine’s Home for Peculiar Children”, which I love, and in the epilogue, it brilliantly describes how anything that changes you forever splits your life into two halves: Before and After.
Before, like anyone else, I had a lot of plans. I just bought a house. I had all the paint, and all the decorating ideas, and SUCH a garden planned in my head. My backyard is luxurious and I had many garden barbecue parties planned already. I had a spare room just for fostering kittens. My kitchen was a thing of beauty, I was planning amazing culinary ventures. This was going to be my forever home.
Before, my health was pretty good. I still had chronic headaches, but they didn’t really interfere with life much. I had lost a bunch of weight and was fitting into 32 inch jeans again – I felt healthy and cute, and was getting confident about my body. I wore size small shirts, and bought new clothes. I had energy, I was doing things and going out.
Before, work was reaching a comfortable zone. I had confidence in my ability to rise to whatever I was asked to do, and I saw a long career ahead. I was going to school to become an engineer and get promoted.
Before, I was comfortable in being single, I was self-reliant and independent. I could do anything by myself.
Before, I never really thought of myself as particularly important or special. I had people in my life I adored, but never felt worthy of their adoration in return.
Before, I never thought about death much. I knew academically that I agreed with assisted dying, I knew that getting paperwork done way in advance was important. I knew I should have an advance directive. I knew it happened to everyone, I knew on a high level what happens and that there’s a ton of complication and high emotion when it occurs.
A year ago today, I was in the middle of the Medical Folderol and had recently discovered I couldn’t stand on my toes anymore. A year ago today, I sat in Dr. Goslin’s office and stared at her hands while she told me that I have ALS.
After, I use leg braces, knee braces, and a cane to help me walk. When I walk down the hallways at work, I usually don’t bring the cane, but walk with one hand brushing against the wall the whole time. My social worker called it “wall surfing”. Walking a block exhausts me. I carried five empty boxes up the stairs last week, setting them on the steps, walk up a couple of steps, pick up the boxes and put them a few steps higher, repeat. I was sweating and out of breath by the time I was done. Walking the mile to the bus stop is out of the question. I carpool with an awesome coworker in his big red truck, and I know there’s going to be a time soon that I can no longer physically get in his truck. I can’t manage the one step up into my house, I have to brace my hands on the doorpost and pull myself in and up.
After, every crowded room is a minefield. Who is going to knock me over? I carefully watch my entire perimeter for unexpected people, or someone in front of me stopping suddenly. Every social interaction is a potential disaster, far and above my usual social awkwardness. There’s no more casually walking around, I have to be keenly aware of movement around me so that I don’t get tripped up or knocked down.
After, everything is a matter of energy budgeting. I wake up already exhausted, and everything is so much harder. My muscles have to work overtime to compensate for the ones that suck. There’s no more “just a quick trip down to the store room” at work. I have to plan that effort. Every little thing sends me in to a sweat. It’s super sexy. There’s no more getting a wild hair and deep cleaning the bathroom. Some weeks the bathroom doesn’t get cleaned at all.
After, my weight ballooned back up. Stress eating. Bleh. But the medical professionals encourage you to gain weight and keep it, with ALS. Heavier patients tend to have better prognoses. And you need that fat, for when you’re not able to eat anymore, like a whale living off its blubber. “Don’t go crazy, you don’t want to need a bariatric chair or anything, but..be nice to yourself and eat what you want.” Cause…fuck it, I’m dying.
After, I’m working hard to sell my house that I love and fought for because it’s becoming a physical impossibility to live there.
After, I am intimately aware of the legality and the complications of death. I’ve met lawyers and social workers and it’s more complicated the further you go. There’s nothing simple about the bureaucracy of death.
After, I know damn well how I feel about assisted dying. And I intend to exercise that right, if it comes to that, and it infuriates me that it’s not an option for Alzheimer’s patients, too. And an option everywhere. Brits should not have to take a permanent vacation to Switzerland to die in a strange hotel-like room. For a lot of money.
After, I am so, so, so blown away – daily! – by how much I seem to matter to people. By the sheer quantity of people who have stepped up to do something, even something small, to make my life a little brighter, simply because it was in their power to do so. And they love me. I thought I was insignificant, someone nice to be around, but certainly not someone who mattered much, and I’ve been told and shown how wrong I was. Constantly. In surprising ways.
After, I know how much I have impacted lives around me. I know how their lives impact mine. I know how important a seemingly insignificant gesture can become, years later. How memories define you, and can change your life without you realizing it. How important it is to reach out to people, all the time, because you never know who will show back up and be a key player when drama unfolds.
After, I know my strength. I know my calm and my pragmatism were not just theoreticals in my head, they are actual and they are real, and they will help me get through this. I know I have the grace and the quiet power that can see me through everything to come, because they have seen me through this far. I know my humor and my compassion will go far and help me survive for as long as I can.
After, I know that I’m seriously a morbid bitch. My dark sense of humor prevailed, and I’m finding things funny that would have appalled me had they been about anyone else. I am in love with a web series called Ask a Mortician, fascinated by the machinations of how we deal with death. I seriously believe we have done ourselves a terrible injury by trying so hard in the last hundred years to pretend that death doesn’t exist, it’s something that happens to other people. Because sometimes, it happens to you. And we, as a society, have forgotten how to deal with that.
After, I am intimate with the kindness of strangers. It never ceases to take my breath away, and it is so life-affirming when a total stranger gives me a kind word, encouragement. When total strangers sent me money to help. When a woman I’ve never seen before or will ever see again looks me sincerely in the eyes and says words of love and strength. And means them. It’s one thing to be told, “Good luck” or “have a nice day”. It’s another to feel someone reach out with their soul and tell you that they wish you all the best, and to keep up my optimism because it will see me through.
After, a year later, I reread my blog and see myself shift in little ways, and discover opinions I never realized I had. I see myself think about hard things, make difficult decisions, and become stronger than I ever thought I’d be. And I know that I’ll be okay.
Before, I didn’t know if I would ever have had strength and support to see me through After. After, I know love and support and strength and grace I would never have discovered Before.
After, I know that by the amazing and profound love of the people in my orbit, I’m going to be fucking FANTASTIC. And I can’t wait to see what the next year shows me.
Every day is a voyage of discovery.
I have recently discovered that I can no longer stand up from a seated position without either swinging my arms wildly in front of me for counterbalance, or using my hands to lift my butt off the seat and pitch forward. I have also discovered that I can’t go in to my backyard when it’s muddy anymore, not even to close the shed door because it’s raining hard and the floor inside is getting soaked, because I WILL fall in the mud and bend my umbrella and muddy the hell out of my hands and knees AND lose the freaking key for the shed lock somewhere in the grass. I have also discovered that I can’t step over the threshold of my house without pulling myself up on the door frame or something. Stairs are becoming akin to mountain climbing.
I’ve had two proper falls since the last Amtrak one. I fell on a wet inclined driveway with mulch while getting out of a car. That didn’t hurt too badly except for very nearly ripping my middle fingernail off. That really sucked. And then I had a fall in my driveway while carrying things inside the house. It was my own fault, I was carrying things with both hands and I have recently discovered that well, I should not be doing that. The fall wasn’t horrible, I didn’t break anything, just skinned the hell out of my elbow and landed on my foot wrong enough that my big toe was a solid bruise for a few days.
On the plus side? My arms are fucking BUFF now.
I had my follow up appointment with Doctor Goslin last Wednesday. We mostly talked about meds, new insurance, and stupid administrative crap. She checked my strength in my thighs and hands and arms and was satisfied with the rate of decline – there wasn’t any. My calves, though, are basically devoid of useful muscle now and my feet are done. When I don’t wear shoes in the house, my feet just drop on the floor with each step – I call it froggy feet. I don’t walk down the stairs so much as clomp.
The last time I saw her, she recommended a sleep study to see if maybe my exhaustion was in part because I don’t sleep well. The sleep study found mild sleep apnea – no surprise, it runs heavily in my family – but nothing to explain the lack of energy. I’ve got a follow up study on Valentines Day, how romantic! And I’ve been referred to a pulmonologist to see if they have any recommendations about that, but I’ll probably be getting a CPAP machine. It will help with keeping my lungs strong, if nothing else, she said. I can see that. I have no idea how the cats are going to handle it. It doesn’t make so much noise once it’s on your face, but still.
Today, we start the voyage of discovery that is med changes. I was out of Nuvigil about a week before I had my appointment with her, and OH MY GOD the difference. I went straight back to sleeping 18 hours on the weekends and nearly falling asleep at my desk all the time. I went home from work and crawled in to bed with my laptop and passed out at like 9, those nights. Because this is a new year, new insurance, she tried to prescribe me adderall again, and gave me samples of Nuvigil just in case.
Insurance denied the adderall. But not a blanket denial! Just..she had prescribed one to two a day, and they only covered one. It’s the second to lowest dose of it, and I was only ever going to take one anyway, but it took a couple of days to sort it out. And by couple of days, I mean I just got it yesterday. Today’s the first day, we’ll see what happens.
It’s a world of flux and change, even if I have the answers. I know I’m going to lose my ability to walk, but it’s a question of when, and discovering daily the new can’ts. I discovered that I can’t function without some sort of energy med. I don’t have an answer why not, yet, but it’s a new can’t.
But sometimes can’ts are not a bad thing. I can’t do this on my own, because I have people who love me and won’t LET me. I can’t stop moving forward, even through all of the can’ts, because I have so many people carrying me.
I can’t stop believing things are okay, because I know they will be. They’re gonna SUCK and be full of more can’ts than I could ever imagine, but somehow, it’ll be alright. Things will work out.
It can’t happen any other way.
Man, I can’t even tell you how busy – STUPID busy – I’ve been. Sorry. I should have posted this one ages ago (last week) because it’s a quick check in.
I had another check-in with Doctor Goslin last Wednesday. It was a strength check, a meds adjustment check, and a general well-being lookover. I’d messaged her earlier with some concerns about my energy levels and OH MY GOD that became a whole thing because my insurance decided to be awful.
So, my energy levels have been in the toilet. Seriously in the toilet. Friday nights I was going to bed around 11, my usual bedtime. And sleeping until 2 in the afternoon. And then taking a nap at 5 until 8. And then back to bed at midnight. During the six hours I was awake, I accomplished nothing. Not even ‘played a video game’ “nothing”, just…stared at the internet and/or watched tv shows I’ve seen a million times and know by heart “nothing”. I like sleep, don’t get me wrong, and I’ve historically spent entire weekends sleeping a whooooole lot. But it’s not something I’m doing for enjoyment anymore. I sleep because I’m THAT freakin’ tired. Unfortunately I’m not really in a position to be able to waste time.
So as I posted before, she called me that evening and we set things up to get me a scrip for adderall. It’s a controlled substance – because let’s be honest, it’s legal meth – so I had to wait for a physical prescription could be mailed to me. We also started me on a low dose of Celexa to supplement the Wellbutrin I’m already taking for depression, because Celexa has better anti-anxiety properties and my fatigue COULD be caused or at least exasperated by depression. I got the scrip, took it in to the local Frederick Meyers..
…and was told Cigna wouldn’t pay for the adderall because they don’t approve of its use in people over 19 years old.
Thus began the Dance of the Morons, where we appealed, they said no, Dr. Goslin tried to clever her way around the restriction, and was shut down again because they do not cover adderall as a treatment for fatigue in ALS patients. But they WILL cover it for MS patients.
MS IS A FREAKIN SISTER DISEASE YOU JERKS. THEY ARE VERY SIMILAR.
Only mine is a guaranteed death sentence, but whatever.
SO they said no every possible way they could in response to every single way we tried to weasel through it. In defeat, during our checkup appointment I was given samples (a lot of samples) of a drug called Nuvigil, which is for sleep apnea, narcolepsy, and shift work disorder.
…I didn’t know there was such a thing as Shift Work Disorder either.
It’s diagnosed for people who work widely varied shifts, like nurses, to stay awake when they are working crappy hours. Just like it says on the tin. Anyway. Yeah. She gave me samples of that. We also doubled my Celexa dose, to be slowly ramped up over two weeks.
We also checked my strength, and she saw no change at all since I saw her two months ago. This is AWESOME. Super slow progression FTW. As she put it, she’d very likely be seeing me for years and years to come. Yayyyyyyy <3 During the visit we also chatted a little bit about assisted suicide, but that...that is its own post. That's been brought up a lot lately, and I want to talk about that. Later though. Later. So in the end of the appointment, she was really happy about how well I'm maintaining my strength, and she saw no reason to see me for another three months (but I'm welcome to email her with questions or concerns of course). I had been scheduled for a clinic day soon, but she canceled that because I don't need it. I started the Nuvigil the next day, and it seemed like I was a little more awake. Friday, a little better. Saurday? I slept until 9AM, screwed around on the internet for awhile, wrote that last emotionally draining post, and then took a nap from noon to two - because I WANTED to. And then I went through my closet and got rid of two bags of clothes, cleaned all the catboxes, tidied my room, went through some things in my office....SUPER productive day. I felt pretty normal. So, Nuvigil is awesome. I'm not sure what we're going to do about that in the long run. We'll figure things out. She always does. So that's the haps, man. I'm doing good. Meds are helping me retain a normal level of activity, my strength remains unchanged, and life is pretty freakin' great.
I gush a lot about Dr. Goslin. BECAUSE SHE IS AMAZING. But, I’m also prone to hyperbole. I get it. You might think I’m exaggerating. But here’s this thing that happened.
Lately, I’ve been having a few more rougher days than usual. Some depression is absolutely expected with a terminal diagnosis. Duh. And I was on antidepressants before I was even diagnosed, because broken brains run in my family and I am no exception. But this last couple of weeks I’ve been more prone to let things get to me, like the Ice Bucket Challenge haters, and slight arguments turn into self-hate sessions, and I am just having a hard time with things right now. In addition to this, things are harder to do, physically. They’re taking a lot more energy than I would think. I’m tired all of the time. And I don’t know if I’m tired because I’m depressed, or if I’m depressed because I’m tired? But everything seems so much harder than it feels like it should be. Friends and family have noticed, and my little brother has mentioned several times joking-but-not that I should ask my doctor for some Adderall. Maybe I’d have the energy to get things done and cleaning won’t be a herculean task that wipes me out for the entire next day.
Monday was a holiday, and a classic Depression Day with lots of sleeping and moping. It carried over to the next morning, which is unusual. I’m typically over it the next day. So I got fed up with being a mopey, tired lump and that afternoon I sent Dr. Goslin an email:
We have an appointment to meet in a month, but I wanted to let you know that when we do meet, I’d like to talk about medication adjustments. I’m not sure the wellbutrin’s doing anything anymore, and I’ve been completely devoid of energy. I know some tiredness is to be expected of course, but for example, yesterday I slept from midnight to noon, ate some lunch, then slept from 2 to 7. And back to bed at 11. It’s to the point my brother told me I should talk to you about adderall or get a speed habit or something. hehe. So when we meet, can we talk about this?
I was expecting maybe an email in a couple of days to acknowledge the question, a quick “Yes, we can discuss your medications when we meet.”
Instead she called me after work. We talked for about about my symptoms, where I was at, and where I thought I should be. She asked what I’d like to do. Do I want to attack the depression, the fatigue, both? I told her I didn’t know, because, (as I said up in that second paragraph) I wasn’t sure if they were separate issues, or if the one was feeding into the other. She gave me many options, made sure I was seeing a therapist regularly, and told me about different drugs, what they did, what their side effects were; she usually prescribes another antidepressant that deals more on the anxiety side, that is a nice compliment to the Wellbutrin, would I like to try it? Additionally we COULD try some energy-producing meds, if I thought that was something I would like to try. She carefully explained all of my options, made her suggestions, and ultimately left it up to me to decide which route I wanted to take.
I didn’t even have an appointment. She won’t get paid for that time, probably. But she made the effort, she called me outside of her office hours, to talk to me and see that I was taken care of. Because she didn’t want me suffering for another month if we could start to do something about it NOW. And this is why I tell people she is amazing. And why I love her. She is one of the most powerful players in my support team and I really don’t know what I’d do without her.
So, without hyperbole and in all seriousness, Dr. Kim Goslin is the mutha-f**kin BOMB.
When I was a kid, and my parents spoke of taking me to the clinic for one reason or another, my child brain heard “clink” instead. I had once heard of being in jail being called “thrown in the clink”, so my kidbrain thought my parents were taking me to jail, just because I didn’t feel good.
The concept of Clinic Day can sound a little bit like jail too. Five hours and a host of doctors and experts cycling through in a dizzying whirlwind. I attended my first one yesterday, which was primarily to get me introduced to the people who will be working with me to keep me alive and functioning as long as possible. I was warned it was long, it was overwhelming. My appointment was scheduled from 12 noon to 5PM. The long haul.
I showed up with Danielle and my older brother Gecko. They’ll be the primary caretakers of my health and my (so-called) estate, so it was important for them to know what to expect in the days to come. The practical upshot of this was that we were our own peanut gallery and amused ourselves through the day with HIGHLY inappropriate jokes. Which would have been even worse, only Lance from ALSA asked if I’d mind someone sitting in on my clinic – she’s just started her job with ALSA and wanted to know what the clinic experience was like. I said okay, since I knew there was nothing really major happening with me, and we tried our best to rein in the Your Mom jokes and gallows humor. Which is the best humor.
We didn’t always succeed, but she was a good sport.
The first appointment was with an occupational therapist and a physical therapist. Tag team! The OT was there to judge my hand strength and to see what kinds of things I can be doing differently to conserve my energy. She didn’t like that I carry my laundry up the stairs, and suggested a duffel bag that I can fill and kick downstairs, and then haul up by a rope or something once I’ve walked up the stairs. She also suggested a rolling cart for my kitchen, sitting down whenever I can, that sort of thing. She measured my grip strength with this weird metal handle device, and amused me greatly by shouting encouragement while I squeezed. “GO! GO! MORE! DO IT!” and I thought “People would probably pay a lot of money to have an Asian woman yelling at them.” And then I realized, I *am* paying her. My grip strength and arm strength were 5s all around, I’m good. My favorite suggestion of hers by FAR, though, was that I get someone else to come over and clean the litter box and hairballs so I don’t have to be on the floor. I am actually worried about my “I can do it” being overridden by my innately LAZYFACE nature – I mean, hell YEAH I’d rather not clean the litter box, but I don’t want to make someone I love have to make a special trip out to my place to scoop the freakin’ box for me. That’s dumb.
The PT was there for walking ability – I’d met her before, when I was doing physical therapy regularly before Godzilla Disease had its other name, my usual therapist had called in because it was snowing, so she filled in. She watched me walk down the hall after asking if I had any concerns. I told her I (and other people) have noticed that I lean on walls whenever I can while I walk. I’d kind of thought to myself lately that a cane would be kind of awesome to have around, something else to lean on. We tried me with a walker, which was really awkward. It’s instinctive to lean on it with some weight, but you’re just supposed to use it for balance. And while it’s awesome to have a seat that you carry around with you all the time, it just felt awkward and weird, so I won’t be using that yet. The cane, though, we had me walk with that (again – balance! not support!) and my gait was better. “You kind of..sashay without it, but you’re more stable with that.” I agreed. We tried me with two and THAT was ..comical. I mean, I don’t even get that whole two cane thing. Hikers do it. It looks dumb, and it turns out that it feels pretty goddamn ridiculous, too.
So I have officially graduated to a cane now. I am borrowing one from the ALSA loan closet (which if I have not said before? is a FUCKING AMAZING resource to be able to have, they’re awesome) but I’ll get my own. They said I can keep it as long as I want, spray paint it, whatever; I get the feeling they’ve got quite a few of them.
Speaking of ALSA, the next appointment was with Lance, with his Social Worker hat on. We talked about financial planning, and the major upshot of that was GET AN ELDER LAW ATTORNEY. It’s expensive now, but they can help me plan financially for the future care I’m going to need, and if I have tax-shelter like options, it’s better to take care of them NOW, since SSI looks back a little ways when you apply for benefits. We talked a bit about the Walk coming up, and then his time was up.
The next appointment was all about making sure I can still speak and swallow okay. This made me a little self conscious because it involves making a lot of goofy faces to make sure you can move your mouth fine – stick your tongue all the way out, now try to lick your nose, etc. With three other people looking at me. It was not helped at ALL when Gecko whipped out his iPhone like he was filming, even though he wasn’t because he loves me and I would genuinely be mortified if he posted any pictures like that. (*Author looks sternly at her brother* RIGHT??) Then she gave me a graham cracker and water, to watch how I eat and swallow. That, also, was weird to do with a total of four people watching me. She explained how the mouth moves when you eat, and how that starts to break down, when ALS progresses, and what to watch for. But I was doing excellent, she said, and everything is normal.
Then I met with a nutritionist. We talked about my weight, about my diet, about how evil prednisone is for that. She agreed that it’s not good for me to lose weight, because heavier people have better prognoses, and I’ll NEED that fat later, but I also don’t want to be super fat so I need bariatric equipment or anything, so take that in moderation. Losing weight is tricky, because the body burns through muscle before fat and…I really kind of need that. She gave me advice on what to eat, how to do portion control, and was justifiably disdainful of how much soda I consume (even though it’s diet) and was exasperated when I told her I hate water because it tastes gross. And it does. You can say all you LIKE that water has no taste but you’re a LIAR. She suggested infused water – which my work cafe has all the time, they just dump some melon or something in ice water and call it fancy. I guess I can do that. But…soda, man. Delicious soda.
Next up was Shana. <3 We were short on time for her appointment and ended up spending most of it talking about Doctor Who anyway, because Danielle is ALSO a Whovian and she hadn't met Shana yet so yeah, we totally devolved. But it was awesome. Then we met the respiratory specialist; I was gonna be cute and call her a breathologist, but that sounded familiar and it turns out it's a thing and it's a pretty dumb thing at that. So. ANYWAY. She had all KINDS of toys. There was a thing to measure my ...cough aptitude? (which is good) but I had to do it twice because Danielle is a bitch. hehe. It involved coughing really hard into a plastic kazooey thing and she said it was a good cough, but Danielle said, "you wanna do it again?" as a joke but then the specialist said, "That's a good idea". Damn her. And then we measured my lung capacity, which made me REALLY self conscious because it involves breathing out as hard as you can and keep going even after you can't. I sounded a bit like Muttley. And had to do it a couple of times. THAT one I'd rather not have an audience for again. But it wasn't as bad as the breath stacking. Oh my GoD. So! You get a thing (I walked away with fabu-less prizes!) that is a modified one of these: [caption width="800" align="aligncenter"] BREAAAAAAATHE[/caption]
Mine is a prettier purple and collapses. It’s a mouthpiece that you clamp your lips over, connected to a tube, which is connected to that bag. You breathe in as much as you possibly can, and then squeeze MORE air into your lungs with the bag, and again, and again, and then hold all that in for five seconds. And then rest a minute and do it again. And then one more. It feels a little like the opposite of drowning? But you’re in total control so it’s not panic inducing or anything, but you think your lungs just can’t hold any more and then you squeeze more in and then again and oh my god I think I’m gonna pop and what do you mean I have to do one more squeeze oh fffffffffuuuuuuuuuuuuuuuuuu
I have to do that routine every day. For the rest of my life.
It’s to improve my lung capacity, and since ALS kills you by robbing you of your ability to breathe? I’m TOTES WILLING to put up with it. But it..dunno. I guess it was a big-ass reminder of HEY DUMBASS DID YOU FORGET YOUR DISEASE WAS TERMINAL OR SOMETHING? BECAUSE IT IS.
Next step was a quick check in with Dr. Goslin, we went over how I’ve been doing and the results of my clinic so far. We’re checking my liver again because Riluzole can cause damage and it’s no good extending my life by 6 months if I’m going to die earlier because of liver failure. We’ve got an appointment in 2 more months for an extended visit to just recheck everything and see where we’re at. It was good for Gecko to meet her, too. She did a quick strength check, we chatted just a little bit about anxiety and stress factors, and then that was done.
And it was only like…3PM with one more visit to go. During one of the waiting times, Danielle mentioned that she thought it would be more of a meeting room environment, instead of the standard doctor office with exam table that it was. “Yeah,” I told her, “I thought there’d at least be a table, so we could color.” The day was hot, and the room was a bit stuffy even before there were four bodies in it at all times.
The last visit was with a nurse. He was a very nice guy – well, EVERYONE I met yesterday was super nice and patient. His job was to talk to me about things like advance directives. He had a packet about all of that, we talked about what it would take to get the form all official – it doesn’t need to be notarized or anything, he said, just signed with witnesses who aren’t involved in the health care decisions. But just in case someone decides to fight it later, it’s a good idea to send a copy to your doctors, and everyone involved in the decision making. The only thing I ever expect would be a problem on that front is some of my very religious family might be opposed to yanking the plug when it’s time because sanctity of life BLAH BLAH BLAH just let me fucking die when it’s time.
I have faith in my posse, though, to see my wishes done.
We were done by 3:30, and I left with some lovely parting gifts – an appointment for next time, an appointment for a followup with Dr. Goslin in 2 months, an order for bloodwork to be done downstairs before I left, a loaner cane, a breathing excercisey thing (they’re called ambu bags when they’re not modified, but I don’t know if there’s a proper name for them when they’re in ALS patients’ hands after modification), and ALSO an application for a disabled parking permit.
Which, when we left, the DMV was still open so we did that so now I have a gimp parking pass! WOOO!~ Instant popularity when we go out for lunch! “Ride with me!” “NO! Ride with ME!” And I also discovered, because Danielle is ON TOP OF THINGS, that I get to skip to the front of the line when you get a disabled parking pass. I guess terminal diseases have SOME benefit, which is awesome because I was number 608 and they were serving 545.
Danielle was amazing through all of this. She kept very diligent notes, which she is transcribing and putting on our shared Google Docs drive where all of my care info is kept (like meds list, lab results, etc). I quite literally don’t know what I’d do without her. Gecko was also awesome in keeping me happydistracted and he had some really good questions. So I’m grateful that they came with me. And then we ate delicious gyros.
And that’s the story of how I did time.
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.
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.
I had my followup with Dr. Goslin about the prednisone and whatnot. More shocks and stabs, more with the scrapey tool against the arch of my foot, more of the “hold your arms out” pushy/pully tests. She concluded that there’s no difference between this session and the last. So that either means the prednisone is keeping me stable, or my progression is just so slow that there wouldn’t have been a difference anyway. She’s taking me off the prednisone now, and we’ll check back in a couple months to see which is the case. If the prednisone was helping, then we’ll have to talk about alternative treatments, maybe IVIG.
You can’t, of course, just stop taking a steroid. It’s a recipe for bad times. So we are tapering me off; down 30 mg from the 40 I was taking, for 4 days, and then down 5mg every four days after that until I’m done. I’m happy to be done with it. I’m grateful that the bitchy side effect never happened; as side effects go, weight gain is not that terrible. It still SUCKS, do not get me wrong, but at least I wasn’t screaming at my loved ones while I bloated up like a whale.
Dr. Goslin is still a little stumped by me. I’m just…odd…enough that she’s not comfortable putting the ALS stamp on my forehead with assurance. She’s like, 99.9999999999999999999999999% sure that’s what’s going on, but how did she put it, something to the effect of, my symptoms are exceptional outliers. So basically, “I’m really pretty sure that this is ALS, but juuuuuuuuust in case some years down the road it turns out to be something different, remember she wasn’t completely certain.” She asked that I be open to further experimental treatments as ideas occur to her.
Let’s see. The only other thing going on with all of this is that I have a cough – which may just be a cough; sometimes? You just get a cough. It’s been about a month now, though. Eeeeeeverybody in my office got some kind of plague, but I don’t think it’s that, as I FEEL okay, it’s just that I cough and clear my throat a lot. My nephew was sick about a month ago and had a cough with it, but it also had a fever, which I never had. And my coworkers and nephew are all better now. For an unrelated reason, I was checking on the various side effects that my Fistful O Meds have, trying to track down the actual culprit for the heartburn I have a lot even though I’m taking ranitidine now. I found out that one of the possible side effects of riluzole is…coughing.
I’ve been on riluzole…about a month.
I really hope they’re not related. It would be a REALLY SHITTY CHOICE, do I live for a little longer? And have a cough for my entire life? Or no cough, but dead sooner. Or potentially take ANOTHER med to counter that.
Before I had a name to my disease, I was calling it Godzilla Disorder.
…Okay, yeah, I need to explain that one.
I didn’t have a name for my problem, only symptoms. Only theories. And so, when someone asked why I was limping, I had no real answer. Just vague theories. “I have some kind of neurological thing going on.” Hand-wave. Again. How do you break that to someone who’s only a casual acquaintance, anyway? “Just losing my ability to walk, thanks. How are you?” While complaining about this dilemma to my very patient best friend and main babe Danielle, she suggested I just tell people “I got attacked by Godzilla in the legs.”
And this is why we love Danielle.
And so ever since, I refer to this as Godzilla Disorder. Even now that it has a proper name. A name scarier than Godzilla. Someone later asked if I called it Godzilla Disorder because it made me walk like I was in a rubber monster suit. Which also made me laugh. Thankfully this was pre-braces, so my walking is SO much better now. I’ll have to attack Tokyo another day.
So, to get to the REAL reason for this post. It’s about back when I was still calling it Godzilla Disorder because I had no name for it. When we didn’t know what was going on, and I’d been through a lot of doctors and tests and MRIs and a spinal tap, I noticed that everyone had their pet theories for what was wrong with me. I had many people playing Dr. House and suggesting obscure things that aren’t ALS or a neuropathy but have similar symptoms. Could it be a vitamin D deficiency? Lead poisoning? Shellfish poisoning? This other, obscure disorder that has maybe 3 documented cases in the US but it’s worth a shot to look in to because it just causes weakness in the feet and stops there?
I’ve noticed this is a pretty common way for people to react to a scary medical unknown. It’s curious as a coping mechanism – you feel powerless to help, so you look for answers and try to be helpful, just in case the doctor ‘forgot’ something. And I’m sure there are doctors that have overlooked everything. It’s really tempting to think that maybe it’s not this complicated, maybe I just need to take some supplements and be cured! And there’s the tiny, egotistical desire to find the problem and be the fixer!
For example, my aunt asked me to tell my neurologist about the time I got really really sick from shellfish (on my BIRTHDAY. We rented a cabin on a really awesome bed and breakfast THAT WAS A BOAT ON THE OCEAN -fucking awesome and I was looking forward to it for WEEKS – and we checked in and then went out to a really nice lobster dinner that I didn’t even get to eat because we started with steamed clams and I won the shellfish lottery and got CRAZY SICK from one while everyone else was fine and I spent the rest of my whole amazing romantic birthday trip throwing up. FUN TIMES.). She’d read that shellfish poisoning can actually stay in your body for years and cause problems that mimic neurological disorders.
First of all, good memory, Aunt Phyllis. Second of all, way to do your research!
All of this isn’t a rant – I’m not complaining about this at all. Far from it, actually! I am totally fascinated with this, and I’ve learned some really interesting things. There are an AMAZING amount of things that mimic symptoms of ALS. And it’s important for those I love to cope with this in their own way, and sometimes that way includes researching for that one thing that I might have that is totally curable. Something, anything that isn’t ALS. Anything to remove Godzilla’s teeth. Here, just take these vitamin D pills and it will all just…go away.
A lot of people in my life have done this, with a few really ardent researchers. Like Lance. Research is what he does, in all things. When things first started coming to light, every day he had a new wiki entry about some new disorder – and they were all about obscure disorders that get better with treatment, or some weird variant of a scary disease that is a not so scary version of it. Always something optimistic.
I’ve told my friends and family that I am happy to forward these thoughts along to Dr. Goslin; she’s never been insulted or offended with my questions. In fact, she responded to Phyllis’ food poisoning theory with, “I don’t think you have this, but I appreciate that people are continuing to think about this.” She’s amazing.
Sometimes, it has actually been useful – my brother suggested I tell her about the genetic defect that I share with my brothers, because apparently it has been shown to have a possible link with neurological disorders. I had no idea. My neurologist is very interested in that research, and has asked me to find out which particular variety of that defect I have, because there’s like 200 of them. If I find out, and there’s a link, then I can help that research by becoming a data point. So, by all means continue. I know that it’s important for you to feel like you have some control over what’s going on, to be helpful.
And who knows, maybe you WILL find the answer and it will be simple.
Just, please don’t be offended when I shoot down your theory with, “I’ve been through that line of reasoning, here’s what came of it.” I’ve been tested for heavy metals. At this point I’ve been tested for every damned thing missing or present in my blood. And my spine. Yes, the doctor has heard of that disorder. And that one, too. She’s a neurologist specializing in motor neuron diseases, she’s very smart.
And she has access to Wikipedia and WebMD, too.
I had my followup with Dr. Goslin today. I had some questions for her, and I wanted her to meet my brother Gecko and my will-be-primary-caretaker and best friend Danielle. Gecko unfortunately couldn’t make it because the poor bastard got a migraine this morning. Suck.
I went in expecting to be taken off the prednisone, I haven’t noticed any change at all except in my weight. I’m all pooufeeh. She did the standard pushme-pullyu battery of tests, and then a little bit of EMG. She decided that I’ve actually gained a little (liiiiiittttle) bit of strength. There was a nerve signal she caught slightly today that she wasn’t able to get at all before. We’re going to keep me on the prednisone for another month, and if there’s another increase, then we’ll discuss more permanent treatment along that line, because prednisone forever is not an option. She not only told me not to worry about the weight gain, but that it’s GOOD that I have some extra weight. People who are a bit overweight tend to last longer, she said. And I’ve already got a slow progression going for me, so….keep that up.
So not only doctor permission to not lose weight, but an active advisement AGAINST it.
Now’s the time you kinda wish you were me.
We talked about familial ALS versus spontaneous, and she told me that there’s increasing evidence that a larger portion of ALS patients have familial ALS than the 10% everyone thought. There is a lot of research being done towards this, and that’s also where a lot of clinical trials are. Our next step is to get approval from my insurance company to get the genetic test that will show if I’ve got those markers or not, and thus make me a good candidate to participate in all the exciting things going on. I don’t think my insurance will turn it down.
We’re also going to start me on Riluzole. Because taking 8 pills a day wasn’t enough. But also mostly to see how well I tolerate it. Because it’s known to do SOMETHING, and if it’s not going to hurt me, then why the hell not. We did some baseline blood work today to measure against potential liver damage down the road, and we’ll see if I get nasty side effects that make the potential extra 6 months not worth it. I don’t wanna have 6 more months of feeding tubes and ventilators if I spend my whole life up to that point feeling nauseous.
ALSO I have an appointment in 3 months to attend an ALS clinic. Mostly to get a feel for how they work, and also baselining and meeting all of the key players in the medical soap opera that is becoming my life. That will be in August. I’m really curious about it.
I forgot to talk to her, but emailed later and discussed that way, about anxiety. I don’t want to be on a maintenance drug for it. At all. Most of the time I’m handling everything just fine. But there are some nights I need a little hand. Usually when I’m trying to think about something really important that I NEED to be thinking about. Like advance directive. I’ll sit and think about it and my brain suddenly goes all staticky and KRRRRSSSSSSSSSSSSSSSSSSSSH and then I either have a panic attack or my mind goes OMG KITTENS AND STICKERS AND SUNSHINE YAY and thinks about literally ANYTHING ELSE. So I told her it’d be nice to have a hand with that, sometimes. She suggested ativan, which I’m leery of because it can be habit forming and makes you sleepy more than just calm.
And then she said, “Medical marijuana can certainly help with anxiety and there are many non-smoking forms of it if you wanted to try that.”
..I have a lot of complicated feelings about pot. Mostly negative. I’ll be posting about that allllllll on its own. I’d be lying if I said I hadn’t thought about it, though – I’d actually mentioned it offhand before to her because I’d thought about giving it a shot for my chronic headaches, before. But yeah. I need to figure some things out. In the meantime, I have a few ativan prescribed to me. I don’t have work tomorrow, and no appointment until 1PM, so I’ll probably take one tonight and see if I can work on advance directive stuff.
So that’s where we are at with the stuff. Tomorrow is my followup physical therapy/orthotic appointment to see how I’ve been dealing with the braces (awesomely). And now you are up to date.
I’ve just done the math and figured out that I have seen 22 different medical professionals over the course of things.
Primary Care Physician – whom I first reported the problem, who ordered some blood work with…
Phlebotomist #1 – and also an x-ray from the…
X-Ray Tech – but the images were normal so I was referred by my PCP to the..
Physiatrist – who asked for an MRI with the…
MRI Tech – who sent test results back to my physiatrist, and because there was an anomaly I was sent to see the….
Orthopedic Surgeon – who decided the anomaly was unrelated and sent me back to my physiatrist who then referred me to….
Neurologist #1 – who did preliminary testing, and then referred me for an EMG with with preliminary bloodwork from the…
Phlebotomist #2 – who did the first round of blood draws – sixteen tests over six vials, but I hadn’t been told I needed to fast for one test so I had to make an appointment to see the…
Nurse – who dealt with my glucose tolerance test (melted otter pops never tasted so gross) and then I was free to see the….
Neurologist #2 – who did the EMG and asked for an upper spine and neck MRI with the….
MRI Tech #2 – who did her job spectacularly and then the results came back to the neurologists but they were baffled so I was referred to…
Neurological Specialist #1 – who was completely baffled and surrendered me to…
Neurological Specialist #2 – who has become my guide and ally through all of this, and she did more EMG pokery and sent me for more blood work with…
Phlebotomist #4 – but those results were normal too so we opted for a very expensive genetic test which required a blood draw from…
Phlebotomist #5 for Athena Diagnostics – and while we waited for that result, I was referred to weekly physical therapy with..
Physical Therapist #1 – and the next week with…
Physical Therapist #2 – and the next week because of terrible weather with…
Physical Therapist #3 – and sometime in there the results came back negative so I was sent off to see the….
Spinal Tap surgeon – who put a fucking NEEDLE IN MY SPINE (tho it seriously wasn’t that bad, House lied to me) and the tests were all normal and meanwhile I had a consultation with…
Physical Therapist #4 – who was called in to do consultation work on me with PT #2, and my doctor referred me to get a biopsy done with…
Surgeon for biopsy – who did the cuttery which led to test results which led to my diagnosis.
..And yesterday I added a technician with a medical prosthetics company to my menagerie.
There will be more, of course – there will eventually be a dietician and a speech therapist and a host of other people. But for now, my posse is 22 strong.