December, 2016

Snow!

Hard to believe that an entire month has passed since my last blog post. I suppose that's a sign that things have been going well; there's not much to complain about at the moment.

The increase in dosage of Rachel's oils, and the decrease in her Keppra dosage, has been good for her. She's working on her bedtime PTSD, which is still a struggle of varying degree every night. Her psych says to practice talking to her brain as if it were her friend, and not her enemy. She says that maybe they can be frenemies, but she's not quite ready to make nice. I get it.

We had a little bit of snow a couple of weeks ago, which Rachel and Stewie both enjoyed immensely. Stewie acts like he doesn't even feel the cold. He'd play outside for hours if we let him. 

Rachel made it through the excitement and busy-ness of Christmas without any problems, and until yesterday had experienced only two seizures in the whole month, both partials.

Yesterday was her second visit with her new neuro. We had to drive to Portland, which is always a stressful proposition, but this appointment happened to be at 3:30 in the afternoon, placing us in a terrible position, traffic-wise. It's never good up there, but this was BAD. We did manage to get to the appointment on time, but Rachel had a seizure on the way, while I was driving 70 mph, in the fast lane of 5 traffic lanes. Fortunately, there was a wide emergency lane I could pull into. The seizure was short, and we were on our way again in about 5 minutes.

I like the neuro. He listens to my opinion, and even though he's pushing for Rachel to try the Neuro Pace implant, he understands our reluctance to put her through more testing, surgeries, etc. Rachel says she'd like to do it, but it will all depend on insurance, co-pays, and out-of-pocket expenses. Sadly, the ability to afford a treatment that may change her life for the better is dependent on our ability to pay for it. The clock is ticking. Rachel is almost 22, so if the new president is successful in repealing Obamacare, Rachel will have to be on Medicaid, and I doubt they'd pay for this surgery and all the testing that goes with it. We left the office with an armload of brochures, booklets and info sheets. We also left with Rach's medical cannabis card renewed. The doctor believes it's helping her.

On the way home, we stopped at a yummy burger joint, both because we were hungry, and to get us out of the Hellish traffic for a little bit. Rach and I enjoyed our dinner, and Stewie crashed out on the floor while we ate. The traffic was still bad when we got going again, but the break was nice. We ended up getting home at about 6:15, whereupon we flopped into our respective chairs, and hardly moved until bedtime.

Today is very quiet. Rachel and Stewart are currently napping, and even though I should be doing something productive, I am here, spewing my guts to a screen. 

Thanksgiving

Good boy, Stewie

The photo above was taken after Rachel's second tonic-clonic seizure in a 1 1/2 hour period. She was wiped out, and so was Stewart. He worries about Rachel when she's having a seizure, and sticks close to her when she's recovering. The bed is a mess of random blankets because her usual set was in the wash, after having been vomited upon repeatedly.

This post is about Thanksgiving; both the holiday and the emotion. We are very thankful that Rachel is ours, and that her situation isn't worse. We are thankful that cannabis is helping us manage her seizures and her anxiety. We are thankful for the wonderful people that grow and produce the oils we use. They are working very hard to get it right, and they really care about Rachel and our family.

We are thankful. We are also wary. We know about the risk of SUDEP, and that the risk is higher in a person with poorly controlled seizures. We do what we can to mitigate the risks, and give thanks for every good day.

Waiting For Rachel

Stewie impatiently waits for Rachel to return

Last year, when Rachel was still up to taking college classes, I started taking random pictures while waiting for her to return from class. I shared some on my Instagram, and some on our dog blog (link to the right --->). The hashtag was #waitingforrachel.

I spend a lot of time waiting for Rachel. She can't drive due to the risk of seizure, or even panic attacks, and she has no desire to do so. She's working on being more independent, and spending time doing fun things without me, but I still have to be nearby, at least close enough to respond within just a few minutes, in case of emergency. Generally, this means sitting in my car, reading my Nook, or taking a walk. Sometimes I have Stewie with me, which is nice for the walks, but many times it's just me, sitting there and trying to focus on reading, while trying not to panic every time I hear a siren.

Lately there have been more times when I'll drop her off somewhere, and then run off to do a small errand nearby, but I'm never gone more than 15 minutes, and the whole time I'm away, I'm dreading and anticipating the ringing of my phone. So far, so good. We haven't had any major incidents while I've been parked outside, or even off-site. *fingers crossed*

Rachel's most recent interest is in volunteering with the school district's SMART (start making a reader today) program. She'll be reading with kindergarteners twice a week. She's done two sessions now, and really seems to love it. Each session is 90 minutes, and Rach has 3 kids that she reads with individually in that time. The first day I was a mess. The school at which she volunteers is close to downtown and the hospital. I should have taken that into account when choosing schools, but she'd worked at this school before, so it seemed the best option at the time. Every time I heard a siren, I chanted to myself "please, don't come closer." 

After the first day, Rachel offered to text me between each child's session, so that I would be more at ease. I was incredibly grateful for her empathy, and that she offered without me asking. PTSD is a horrible thing, and mine seems pretty firmly centered on sirens, tonic-clonic seizures, and hospital smells. Weird, right? ;)

I don't think I'm unique in my need to be close by when my neuro-atypical young adult is off on her own. She has Stewart, a body alarm that he can pull, a watch that can detect and report a tonic-clonic seizure, and an ID tag that has a QR code which will take responders to a web page with all her pertinent info. The poor kid is bogged down with all the safety gear I can get her to wear, and I still wait nearby. It's quite likely I'd benefit from some good therapy, but those funds, and the time for the appointments, are currently allotted to Rachel's need for psych care. 

I envy those parents who, even though they worry, can let their young adults walk out the door, and be gone for hours, without the outright fear of a random storm in their child's brain causing them harm. Who don't have the concern that in the midst of a seizure their child may be confronted by police, and harmed because they can't respond to commands. Who have the normal expectations of sending their adult child out into the world to get jobs, make friends, and go on to live an average life. We have no idea what will happen for Rachel next, or whether she'll ever be able to live on her own. 

A Day In The E-Life

Rachel was supposed to begin her volunteer work with the SMART program last week, but she had the seizure day from hell, and she was sick, so we didn't want her to a) spread the virus to other volunteers and children, or b) become so rundown that it would take longer for her to recover.

So, tomorrow morning will be Rachel's first day helping kids read. She asked me to please keep Stewie for her, at least on this first day, so that she can both focus on her duties, and make sure that nobody is allergic to dogs before having him there. I'm okay with that, and it shows that she's using good judgement and working out what to do.

It's now been a week since the last seizure. Rachel has been sort of fussy today, and is extra tired. I'm hoping it's just that she's still recovering from the virus, and the weather is lousy, but I'm afraid that she may be kindling up some seizure activity. Mornings are usually "safe" as far as being able to avoid seizures, so I'm not too worried about tomorrow, as her reading time begins at 9:30, and is only 90 minutes long. Still, she'll be more than ready for a nap by the time she's done.

Naps are just a part of the package around here. Rach can occasionally go a full day without one, but that's pretty rare, and this last week she's been having an extra nap in the afternoon every few days. This afternoon she even asked to take a hot shower-bath, which is something so rare that it was shocking. Usually I have to remind her to do the kind of self-care that most of us just do automatically. Afterward, she climbed into bed for a second nap.

Our lives revolve around Rachel's seizures and energy levels. It can be frustrating, but we learned long ago that it does no good to fight it. Plans get changed sometimes on a moment's notice, and we never leave home without emergency medications, a vape pen, and a towel, just in case of seizures. These things have become so common now, that it's just not something we think about much. It's like grabbing my purse and jacket before walking out the door.

Just a few more aspects of life in e-land.

Fallout

I'm having trouble focusing on any one thing right now. I have seldom been so scattered in my thinking, or frozen in my actions. 

This whole week has been surreal. First the 24 hour period from hell, in which Rachel experienced 1 CP seizure with vomiting, 2 tonic-clonic seizures, and 2 SP seizures. Second, Rach is still sick with a cold, which continues to be a seizure risk. She knows this, so going to bed at night has become very angst-producing for her, requiring lots of support and time to calm down.Third was the election, the results of which didn't come until late in the night, on the third night in a row of poor sleep, and culminating in a surreal Wednesday morning.

It's now Friday, and though I have been able to sleep a little better the past couple of nights, it's still broken by Rachel's coughing, and worry over what's going to happen to her should Obamacare be repealed. Rachel will be 22 in January, just days after Mr. Trump is inaugurated. He and his party now hold my daughter's future in their hands, and I am not happy about it.

I've been talking with my husband about what this means, and he is as sick at heart as I am. The first thing he did was contact his employer's human resources department, in hopes that we might be able to pay out of pocket for ongoing insurance for Rachel. Turns out we can continue with her current plan for 18 months, if we pay the full premium, which would be hundreds of dollars a month.

The most obvious thing would be to sign her up for the state's Medicaid program, but that would mean all new doctors, and the possibility of certain medications not being covered on their formulary. We knew that we'd eventually have to deal with this, but didn't expect it for another 4 years. To be honest, we had hoped that by the time we had to make those decisions, Rachel would be in a better place healthwise and mental healthwise, and would be able work, thereby being covered by an employer health plan.

We are trying to remain optimistic, but it's difficult. I have personally never been this worried about an incoming president. It's not a good place to be.

I'm Tired

This post may end up sounding somewhat stream-of-consciousness, but that's only because it's almost 11 p.m. of the day after the time change, I'm recovering from a cold, and I'm still processing the nasty seizure Rachel had this evening.

November is Epilepsy Awareness Month in the US, but of course every month is filled with epilepsy awareness in our house. It's pretty hard to escape, as much as we'd like to. There is no photo to accompany this post, and you should thank me for that. Tonight's episode was particularly technicolor and intense.

Brett and I are on the downhill side of a virus, and today Rachel began feeling as though maybe she was coming down with it, too. This is always bad because just having her immune system fight a virus can lower her seizure threshold. She also happens to be just a couple of days from ovulation, when she needs to begin taking a progesterone supplement, and we just had the aforementioned time change. Every one of these events can be a seizure trigger, and they've all lined up together. Awesome.

At bedtime I offered Rachel a 1/2 dose of Nyquil, and sent her to bed. Fifteen minutes later she said "Help," meaning she was having a seizure. I ran in there, swiped her VNS with the magnet, and began the wait. It very quickly became obvious that this was going to be a Complex Partial, so I ran to get Brett, just in case I needed help keeping her from climbing out of bed, etc. I'm glad I did because just a minute later Rachel began to vomit. This is especially bad in someone having a seizure because not only can't they help you, they seem to be actively fighting your efforts to keep them in a position that will enable them to breathe.

There was red-tinted vomit, with tasty chunks of nachos, all over Rachel, her bed, the floor, Brett and myself. I did manage to grab a bowl and several towels in the process, all while trying not to gag myself, and Brett was the unlucky sod who got to try to wrestle Rachel into a sitting position so that she could throw up without aspirating. It was quite a struggle. Rachel is a grown woman, and seemed determined to lie down, even though there was no way she could breathe in that position.

After the vomiting was finished, Rachel was still post-ictal, shivering, sitting in clothes that were sticky and smelly, and Brett was still sitting behind her, holding her up, and trying to help me get her yucky nightshirt off, so we could clean her up and get a clean shirt on her, all while she fussed, shivered, and shot him dirty looks because he wouldn't let her lie down. I finally had to give her a small amount of klonopin, which did help with the tremors, and by then we felt fairly confident that she was finished vomiting, so we did the best we could to strip the soiled bedding, so she could lie down again.

I started a load of towels, sheets, blankets and a pillow, while Brett gingerly took a seat in the living room. This experience did nothing good for his already bad back. He's got a referral for physical therapy, but they haven't called yet, and he's in a lot of pain. Wrestling an unconscious but ornery woman, who is trying her best to choke on vomit does not do good things for one's spine or psyche.

Brett has to work very early in the morning, but I couldn't convince him to go to bed until Rachel had slept about an hour, and then woke for a bit, getting up long enough to brush her teeth, have a little ginger ale, and talk with us for a few minutes before climbing back into bed for the night. Still, I know he'll sleep fitfully, and he'll text me tomorrow to make sure everything went okay all night. I don't know yet if I'll try to go to bed, or just doze in the recliner so I can hear the monitor instead of Brett's snoring.

So, while everyone in America is fixated on the presidential election, we'll be over here in e-land, fixated on keeping our daughter alive, and hoping that whoever is our next president doesn't make things worse for people like her. 

Craftsman Makes A Damn Fine Door Remover

When is a screwdriver not a screwdriver? Why, when it's an emergency door removal tool, of course! The item in the image above may appear to be a pretty pedestrian Craftsman 3/8" flat head screwdriver, but it's the tool my husband used to take the hinges off our daughter's bedroom door late one night, several months ago.

It goes a little something like this: It was after midnight, and we were all tucked snugly in our beds. I woke to the sound of heavy footsteps in Rachel's room, and then a couple of hard stomps and a loud bang, as if someone had punched a wall. My husband Brett and I both jolted up out of bed, and made tracks for Rachel's door. The door was shut, and there was no sound at all coming from her room. The video monitor showed that she was not in bed, so we tried to open the door. It would only open about 6 inches, because Rachel was collapsed behind it, and leaning up against the wall on her knees.

We called and called to her, but she didn't respond, and we couldn't push the door open more, being afraid of injuring her, and not knowing how injured she might already be. Stewart was pacing around, sniffing at her, licking her, and looking at us through the cracked door, probably trying to figure out why we weren't doing anything. I was beginning to panic, but Brett assured me that he could hear her breathing, and he ran off to get something to pull the hinges out of the door.

Enter the screwdriver. I held the handle side of the door, while Brett worked to get the hinges out, which fell into Rachel's room as they came loose. Not even that noise roused her, and I was very concerned. Finally the door was loose, and we could take it off. Brett went in to check on Rachel while I gathered a towel and emergency meds. By the time I got back, Rach was starting to come around a bit, and Brett could get her off the floor. She said that she had awakened, but was thinking how cozy she was, and that she just wanted to go back to sleep, but needed to use the bathroom. She said she swung her feet out of bed, and didn't remember anything else. So, we assume a complex partial seizure started, which used the momentum she already had going, and took her all the way across the room before it got to the part where she went limp and folded to the floor.

So, the humble screwdriver now perches just outside Rachel's door, in case anything like this should happen again. The hinges will come out more easily next time, but I sure hope there isn't a next time. 

Unsolicited Advice

See this gorgeous waterfall? I took my daughter and her service dog on a nice hike up to it recently. It was raining a little bit, and the trail was muddy, there were leaves all over the place, and it was glorious! The river is swollen from all the recent rain, and the falls are crashing and beautiful. We were having a really good time.

Then some random stranger on the trail decided to start giving unsolicited advice about how to train the dog. Wait, what?! First she asked if he was in training (this happens every time we go out). My daughter told her that no, he’s her dog and is working. Then the stranger starts in on some rant about her friend who lives in New York and is blind, and she’s getting her fourth dog, but she fell down the stairs, and if we don’t want our dog to go after random things we should teach him some obscure Russian word, so he doesn’t run off into the bushes. Okay, crazy, gotta go now.

Seriously. Every single time. Can’t we just have a nice hike in the middle of a random forest trail without some weirdo telling us how to work with our dog? I’m getting tired of being polite, and one of these days I’m going to blow and just tell some idiot to go away and leave us alone.:/

Little Big Things

For the first several years of Rachel's life we maintained a Costco membership. There are only three of us, but it was great for diapers, quick dinners, new books and movies, and thousands of other random and wonderful things.

For the first few years after the seizures started we kept the membership, but didn't shop nearly as much. We mostly used Costco for gas and maybe grabbing something for dinner. Eventually, we were forced to stop shopping there because Rachel couldn't tolerate being there. By the time we'd get to the back of the warehouse, she'd be starting to feel dizzy, and we had more than one instance in which we had to leave a loaded cart and bail out of the store, hoping to outrun the panic attack or seizure that was building.

The very last time I remember shopping at Costco with Rachel, we were actually in line and she collapsed, crying, drooling, completely limp, and totally blocking both foot and cart traffic, right in front of the cash registers. We decided that shopping at Costco was no longer worth the risk, and let our membership lapse.

We had similar issues with Walmart, but at least you don't have to pay for the privilege of shopping there, and it's easier to get in and out quickly, in the event of an emergency. Still, there were many trips to Walmart that ended with me waiting in line to pay for groceries, and Brett taking Rachel out to the car, in hopes of helping her calm down.

Over the last couple of years shopping at Walmart has become much more commonplace, and much less stressful. Rachel almost never mentions being dizzy, or overwhelmed, and I don't feel quite so much like I'm rushing to get what I need, just in case I have to get out of there in a hurry.

We started thinking that maybe, just maybe, Rachel would be able to tolerate Costco again, so when Costco announced they were now accepting Visa credit cards, we decided to give it a go. 

*Cue the maternal angst*

Rachel kept assuring me that she'd be fine, and really wanted to try shopping at Costco again. We shopped at Costco today, for the first time in at least 5 years. It was busy, and crowded, and the parking was hellish. I had to walk down the side of the building in order to get a cart, and then Rachel insisted on checking every type of fruit they carry. We cruised the freezers, meat section, books and movies, and by then we were back toward the front of the store, and I asked if Rachel was ready to go. She said that yes, she was finished, but looked good and wasn't flushed or biting her lips, so I figured she was probably okay.

We got in line, and Rachel asked if she could go get a smoothie, which was something she had always done at the end of our shopping trip. I was almost checked out when Rach reappeared, handing me my change and happily sipping her drink. We made our way out of the store and got the car loaded up, the dog in the back seat, and the cart returned. I got into the driver's seat, turned to Rachel and asked how she was doing. She said "I only started to feel stressed when I got my drink, and then had to figure out where they put the straws, and when I turned around I didn't see you right away. But I'm fine now." 

I took the first deep breath I'd had since we arrived at the store, and realized how big a shopping trip had become in my mind. Shopping used to be a mindless necessity. A chore. Boring, but necessary. Now it's a minefield of stressors, with too many people, too much noise, bright and sometimes flashing lights, conflicting scents and bright colors. I will probably never not be tense while shopping again.

I dream of a day when small, mundane chores can be taken for granted again. 

Iffy, She Says

Tucking Rachel into bed for the night, we're laughing, she's taken her bedtime dose of oil, and she's got a chewy candy in her mouth, when she suddenly goes still, then hastily swallows the candy. I immediately feel tense.

"I feel iffy, and have some quiet sounds," she says. 

I grab the VNS magnet, and ask if she'd like to be swiped. She nods, so I swipe across the implant over her left breast, and ask if I got it. She nods again, and then does some slow, deep breathing. 

This could go either way. It could pass fairly quickly, or descend into a more involved seizure. Right now it's what would be called an aura, but is actually a simple partial seizure. Rachel is still very aware, talking with me and trying to distract herself so she doesn't panic and make things worse.

The swiped VNS will run for a full minute, at an increased amperage over it's normal setting. I check the clock. It's been more than a minute.

"How are you feeling?" I ask. "Do you still have sounds?"

"Yes, but they're quieter now." 

I take a deep breath. Maybe we'll get away with this tiny seizure, just this once. It's almost too much to hope for. It would be a one in 300 or so that a seizure is this small, and there's no panic attack.

"My head feels like it's full of fluff," she says. 

Rachel's eyes are red rimmed, and the lids are puffy; a sure sign that she's pretty tired. 

"Do you think you can lie down, or will that make you feel worse?" I ask.

"I don't know, but I'll try it and see." She does lie back, and indicates that she's feeling okay.

I hover for a minute, hesitating to turn off the light and walk away, only to hover over a monitor in the living room.

"Mom, I'll call you if I feel bad again. Don't worry."

I always worry. But I turn off the lamp, touch her arm one more time, tell Rachel I love her, and leave the room. I never leave her without saying "I love you." I live in fear of SUDEP stealing her from me.

I pull my computer onto my lap and open the seizure calendar. This has been a busier month than she's had for awhile, but somehow this tiny partial seizure has given me some hope. I check the clock again, check the monitor again, enter the seizure details on the calendar, but don't close the calendar just yet. I want to be sure she falls asleep before I do that. I tell myself it's just expediency; so I don't have to go through the wait of having the program open again if she has another seizure, but the truth is that somehow I feel like leaving it open means another seizure won't happen, like a talisman against that evil.

Before epilepsy I was never superstitious, and I still halfway believed in God. Before epilepsy a lot of things were different. Before epilepsy, life wasn't so iffy.