Inspiration

Check out Fight Song by Rachel Platten on Amazon Music https://music.amazon.com/albums/B0189VVIC0?trackAsin=B0189VVN5W&ref=dm_sh_Zhm4CnYtvIwtS24DTqcZfvbkE

Changing Seasons

I just realized that it's been 3 months since our last update. It's been a busy summer, and I've taken approximately 1,000 pictures. I'll spare you, and only hit the highlights.

First, Rachel got a tattoo. It means a lot to her, and she's so happy with it. She sees this as the foundation for a life story, all in little pieces. For someone with memory deficits, Rachel sees her tattoo(s) as a way to commemorate special times, and act as a reminder later on.

Puzzle piece tattoo

A week or so after Rachel got her tattoo, Stewie got his first hot spot. We got him treated, and the vet gave us a cone to use. Sadly, Stewie could not tolerate the cone, so we bought a blow-up Kong collar. The World's Most Flexible Dog (TM) was able to reach the spot anyway. When the second hot spot showed up just a couple of inches from the first one, we decided it was time to buy a puppy onesie. Stewie looks a lot thinner with all the fur bound up. The hot spots both healed, and the hair is growing back.

Stewie's puppy onesie

Since we've been working on letting Rachel do more of her own self-care, we bought a new med tray system, which she loves, and is easier for her to manage. She can fill as many as 31 days worth of meds, or just a few, at a time. Next we'll work on ordering refills and managing that part of the process.

New med tray system

The Oregon Zoo was getting ready to bid farewell to their polar bear cub, Nora, so we decided we'd better get up there and visit. Turns out that Nora loves dogs, or maybe it's just Stewie. She followed our progress throughout her entire enclosure and put her nose right up to Stewie's through the glass. Nora is being moved to a zoo in Utah, where she'll have a companion, and as much as we're sorry to see her go, it will be in her best interest. Nora is bored and lonely. Her new friend is named Hope, and is about the same age.

Nora the polar bear.

Now it's September, and we took a short trip to the coast for my husband's birthday. He went fishing, and I took Rachel and Stewart out to play. The weather was gorgeous, and we played all day. There was a lot going on, the days were long, and we didn't sleep well, but Rachel was a champ, and didn't have any problems the whole trip. It was wonderful.

View from the Umpqua Lighthouse

Summer is almost over, and Rachel has decided she'd like to return to school, so she signed up for an art class at the community college, with plans to return to her degree program winter term. It took some effort, but Rachel was able to get registered for class, and order the text book. She ordered and paid for the book online, and opted to pick it up at the school book store a few days later. It so happens that those few days encompassed our coast trip, so today was the day to go get the book. I drove Rachel to school, but she took Stewie in and I waited in the car. She came back with the book, and we drove back home.

Once we were home, I realized that she had actually purchased the book she had in her hand instead up just picking up the one she'd pre-ordered. So, she had paid twice, and had one book. Oops. So, we loaded up again, and headed back out to the school. Rachel was very upset with herself, and I could see that she was very anxious. We were almost to the school when Rachel indicated that she wasn't feeling well, so I pulled into a parking lot, and she tried very hard not to have a panic attack, but she ended up having a short meltdown. 

We're getting better at recognizing the difference between her panics and the seizures. We now have what we call the "go bag." It contains the magnet for her VNS, a vape pen, and rescue cannabis oil. We're also getting better at remembering to take it in the car. I was able to grab the bag, swipe the VNS in case it was a seizure, and put some oil in her mouth. A few minutes later she was able to focus and we continued on to the school. This time I went in with Rachel, and we got the book situation taken care of.

The "Go Bag."

School starts on the 25th, and I'm feeling more confident in Rachel's ability to cope with the stress. She's interested in taking on more responsibility for herself, and is looking forward to getting out more, engaging people, and spreading her wings more. She knows there will be difficult days, and probably more panic attacks, but she is feeling more positive about her life, and that is the biggest thing.

The Best Laid Plans

Mt. Hood Forest Welcome Sign

A few weeks ago, my husband came up with a wonderful, horrible idea. He proposed that we drive up into the nearby mountains, find a dark, quiet place to park, and look at the stars. He got really into the idea, checking moon cycles, and downloading a star chart app on his phone.

Finally, the big day came. We loaded up Rachel, Stewart, a blanket, pillow, jackets (it was 101 degrees during the day, but cooler in the mountains), bug spray, bottles of water, granola bars, towels, emergency meds and oils.

The drive up to the site Brett had pre-scouted took about an hour and a half. It was beautiful to drive along in the dusk, seeing the bats and birds hunting for the evening bugs. Once we turned off onto the forest service highway, we saw an owl, a fat little rabbit, and tons of bugs. Seriously, you should see my windshield. It's a bug graveyard.

We found our parking spot, tumbled out of the car, let Stewie take a break, and then I promptly stepped off the edge of the highway, overcorrected, and fell on my ass. Good thing it's well-padded; I didn't even bruise. Rachel spread out her blanket, plopped down her pillow, and just took it all in. There will be no photos of the stars, because 1) I'm a crap photographer, and 2) I was enjoying myself too much to worry about it. 

Rachel sees the Milky Way for the first time

We were parked, staring at the sky, for about an hour, but it was very late, and Rachel hadn't been able to nap during the day, so we packed back up, and began our descent. We had gone maybe a mile when Rachel indicated she was feeling carsick, so Brett found a place to pull over, we got her out, and she did indeed vomit. We soothed her as best we could in pitch blackness on the side of a forest highway, with only the cabin light of the car for illumination. She heaved a few more times, and then (because, why the hell not?) a complex partial seizure started.  Of course. 

The surface we were kneeling on was very rocky, and strewn with forest debris, so I grabbed the blanket out of the car, ready to lay it down for her, but she was pretty well settled into leaning against Brett, so I swiped the VNS and waited it out. As with all of her seizures of late, there was no panic, and even though she lost consciousness, she was able to be roused enough to get back into the car. Once we were sure she was stable, we continued on down the mountain, and onto the main highway.

We'd gone about 5 miles down the main highway, when Rachel indicated she'd be sick again, so Brett managed to find a wide spot on the shoulder, and this time Rachel stayed in the car, just opening the door. I got out to support her, in case another seizure started, but this time it was just the sick, so she was able to sit back up, have some water and a mint, and then we were on our way again. The rest of the ride home was just fine, and Rachel finally felt better.

This is maybe the second time in her entire life that Rachel has actually been motion sick enough to vomit. Thank goodness it was a good 3 hours since she'd taken her meds. By the time we got home, it was after 1 a.m., so Rachel brushed her teeth, took some oil, grabbed her dog, and crashed into bed. We have tentative plans to drive up to the local hiking/camping spot, and meet up with out-of-town family, and Rachel says she's up for it, but we'll see how the morning goes. 

Change Is In The Air

If there's one thing we can count on when it comes to Rachel's seizures, it's their changeability. Just when we think we've got a handle on what to expect, something new takes place. The last couple of days have highlighted that for us, but it's not all bad.

Yesterday evening, Rachel took Stewie, and went to use the restroom. She closed the door, which isn't abnormal, but since we got the new carpet, the door makes a much tighter seal, and it's harder to hear if she calls out. Also, we had the air conditioner running, and the TV on. We didn't hear anything unusual, and after a few minutes Rachel opened the door, and sort of stumbled out. She was slurry, and indicated she'd had a seizure, so we took her to her room to lie down. Fortunately, the seizure was a partial, she didn't fall, and wasn't injured in any way.

When she got up, we asked Rachel what had happened, and if she'd alerted Stewie to the seizure. She said she didn't say "help," but when the seizure started he became agitated, and went to the door, but it was shut all the way, so he couldn't open it. She didn't see if he tried to pull the alarm. We didn't hear anything at all. Usually we would hear his claws on the floor or door, or his efforts to pull the alarm on the tub. We discovered later that the alarm has become very hard to pull, so may be rusted inside, and needs to be replaced. So, no closing the door all the way until we are assured Stewie can either pull the alarm, or open the door. All in all, she was unharmed, and didn't experience any panic, or we would have heard her screaming and crying.

This evening we were sitting in the living room, and Rachel indicated that she wasn't feeling well, and then said, "Yup, I'm going down." That was an unusual presence of mind for Rachel, and the first time she's ever said anything like that. The seizure progressed as they usually do, we swiped the VNS, and comforted her until it ended, and once again there was no panic at all, and her recovery was swift. We have often said that the worst part of Rachel's condition is the anxiety that goes along with it. These last two seizures have given us a lot of hope that she may be overcoming that debilitating reaction to seizures.

We made the increase in her cannabis dosage a couple of weeks ago, and since then Rachel has been sleeping less, able to stay up most days without a nap, and generally more willing to be up and about. While all of this is wonderful, and we certainly hope that it will continue, we always remember that it could all change with the very next seizure. We are always in a state of wary readiness, and each seizure is a unique experience. 

In the meantime, we'll be doing a round-up of all the alarms, checking each one for ease of use, and continuing to work on training, and ramping up the seizure response training that Rachel has slacked off on. I've been making sure she takes her oils each day, and now I have to make sure she's doing response training at least a few times a week, no matter how much she complains. Rachel says she feels too conspicuous doing seizure simulations in public, but I remind her that's the point...that people will notice if something happens. 

We have a neuro visit next month, and we'll decide then whether to attempt a minor reduction of the benzo she's been on for about 8 years. Now that the anxiety is better controlled, we might be able to make that reduction without a major relapse. As usual, any change that's made will be low and slow. We still have a long way to go with her oils, so we'll make another small increase before any other changes, and monitor the situation.

Here's hoping that future changes are in the positive column, and not the negative. We've lived this life for 14 years, and still feel like we're learning on the job. We still make mistakes, and don't always anticipate what problems might occur. What we have going for us is a great kid who wants a better life. 

High Doesn't Have To Be Toxic

My intention is to use this forum to share our family's personal experience with epilepsy, including treatment options, tests, evaluations, reactions, and outcomes. Our choices and options may not be right for anybody else, and every person must make the best decisions they can for themselves and their kids.

All of that to lead up to this: We have a morbid sense of humor. We're irreverent, snarky, probably swear too much, and unless things are very serious, we try to make something light out of things that might be considered heavy by some.

Lately, we have been considering what we can do to improve seizure control for Rachel, and reduce her chronic anxiety. We have been dosing her cannabis oils in very small amounts, and I knew that it would be more helpful to increase those doses, so we consulted with our oil maker, who confirmed that Rachel's dose is incredibly low, and that we should probably work on titrating up. Rachel uses fully activated forms of THC and CBD oils, which means that if she hasn't acclimated to a particular dose, she can experience a "high."  We have been so conservative with her treatment that it had never happened, and I admit to being concerned about how she would handle it, in the event of an "overdose."

Well, we increased the dose marginally yesterday, with no trouble at all. This morning Rachel dosed herself, and the syringe slipped a little bit, so she got another 1/10th ml more than usual...effectively doubling the dose she was at two days ago. She had her morning nap as usual, and when she got up still looked really tired to me, with slightly puffy eyelids. She said she felt heavy and slow, but was SO relaxed, and her anxiety level (on a good day it's 4-5) was practically non-existent. She was calm, happy, and relaxed, but was having some difficulty compiling her thoughts, so she went to lay back down for a bit.

So, that's it. Rachel was "high" on cannabis for the first time. She has been stoned on prescribed sedatives to the point that she couldn't think or speak straight, walk in a straight line, or stay awake at all. She's been toxic on epilepsy medications, which made her joints ache, gave her double vision, and caused nausea to the point of vomiting. I will take this over any of that, any day of the week. This will only last a few hours, and we can easily adjust her dosage from here, and know that she is tolerating her treatment well.

Cannabis treatment is not for everyone, but unlike the majority of her other medications, an overdose is not fatal, and rather than being worried, we were giggling about how she was feeling, and how content Rachel was to just sit with the dog in her lap, and play on her phone. We are so grateful that we have had the opportunity to give cannabis a chance, and we are nowhere near ready to give up on it. I'm only sorry that we waited as long as we did before getting started.

A syringe of one of Rachel's cannabis oils. A single dose is 3/10 of ml.

***I'm going to just assume that I don't need to tell you that we really don't intend for Rachel to be high every day, or that she doesn't drive, and if she did we would be very, very careful about her cannabis use.

Adulting Can Be Daunting

Soo booorrreeddduh!

Yesterday, our local epilepsy run/walk committee was holding an informal meeting at the Saturday market, and I invited Rachel to go along, which she usually enjoys. She declined, so I took Stewie with me, so he could get some exercise and fresh air. When I got back, Brett told me that Rachel's friend had called, and invited Rachel to go out and do something with her. Rachel also declined that outing. 

Today Brett and I were both ready to order our new glasses, so we loaded up the kids, and made our way to Walmart. I decided that Rachel isn't really inclined to do much if we don't expect her to. We fully respect her decision to stay in if she's not feeling well, etc., but both of the outings she declined are things she usually enjoys very much, and we're afraid that staying in, and doing nothing but playing video games is too isolating, and she needs to do more.

I wrote a short list of groceries, items with which I know Rachel is well familiar, and handed it off to her, as Brett and I started shopping for frames. There was a short bout of sputtering, and self-doubt, but I reminded her that she is quite familiar with the layout of this store, she had her alarm, phone, dog, and emergency ID tag, and I fully expected that she was more than capable of completing this task. Within 15 minutes, Rachel was back, with every item on the list, pink-faced, but proud of herself. I was proud of Brett and myself, because we didn't check our watches or phones even once.

Two years ago, a regular shopping trip, at my side, would have been too much. A year ago, attempting to do this much shopping on her own would have meant a nap after we got home, and then a very quiet evening. Today, she got it done, and then sat and played her game while she waited for us to complete our transaction. Once my part was finished, I grabbed the cart and did the produce shopping (I'm picky, so I didn't expect her to do that part), and then I checked out the groceries, and we all went home.

Now, I know this doesn't sound like a big deal to most of you, but for Rachel, and for us, this was huge. The only time she usually goes off on her own is when she wants to shop for a video game, or something for herself. Rachel hasn't ever been sent off on her own to do shopping for the family, while using a list. She also had to visit the OTC section and find a specific brand and strength of a vitamin supplement she takes. She did a great job in both areas, and what she doesn't know is that from now on we'll be splitting the shopping list, and meeting in the middle. ;)

Adulting is sometimes hard for those of us who are neuro-typical. For the atypical it can be downright daunting to do daily self-care tasks. It's time for us to believe that Rachel has the ability, but we may need to provide the motivation until she believes it, too.

 

E-day Preppers

In the wake of seizure #somethinginthethousands, my mind trips over all the weird times, places and situations in which we've dealt with seizures, and all of the random stuff that happens at the same time.

We've had seizures in the car, of course, and those times have been in the drive-thru of the pharmacy, a fast food restaurant, countless parking lots, while driving 70+ mph in the ultra-fast lane, and many other times.

There have been seizures, and debilitating panic attacks, in grocery stores, schools, motorcycle shops, malls, a body piercing parlor, while on hikes, and the dentist's office. Surprisingly, we haven't had one at a doctor's office yet. 

In the beginning of our seizure journey, when Rachel was still having a lot of tonic/clonics, she would wet herself. That doesn't happen anymore, but now whenever she has a seizure, particularly if it's a big one I experience a sudden, and difficult to control, urge to use the restroom. I have IBS-D, and on any given day can be found bee-lining to the bathroom. There is a definite connection between my anxiety level, and my touchy gut. It's a pretty lousy feeling to know that when my daughter needs me most, my gut is insisting on bugging out. 

These are things that I think a lot of caregivers don't really talk about, but which are very real. We are just humans. We're not supernatural heroes. We do the best we can for those who depend on us, but we're fallible, and sometimes feeble, ourselves. It can be a juggling act, meeting the needs of our loved ones, and taking care of ourselves at the same time.

I also have rheumatoid autoimmune disease. My condition is good for someone diagnosed over 20 years ago. However, I do have damage, and limitations on what I can physically manage. Rachel is an adult, and about the same size I am. If she collapses, I can manage to help her get to the floor without injury. I can usually get her rolled onto her side during a seizure, but sometimes she fights me, and then she'll begin to choke on saliva, so I struggle to turn her and keep her there. If she's sitting upright in a chair, we sometimes have to restrain her, in order to keep Rachel from getting up and walking off. She's strong, and during a seizure doesn't have the brakes she does while lucid. Rachel has scratched my cornea, my arms, and legs during seizures, and will sometimes get a grip on my wrist which hurts. Trying to restrain her, and keep her from getting a grip on me can be a challenge. We've had to peel her fingers off of Stewie's paw, because she was gripping him so hard.

Rachel will sometimes drool heavily during seizures and panic attacks. It seems like gallons sometimes. I keep a small towel in the car, and the first thing we do when she indicates a seizure is grab a towel. There was a time I considered keeping a spare shirt in the car, but never got around to it. She has soaked herself many times. She's always dismayed by it when she's herself again, and we've had to leave someplace sooner than intended, or turn around the car, and go back home for clean clothes, before carrying on with our errands for the day.

We've cancelled plans so many times I can't count them all. We've arrived late, or left early, for many events. Rachel didn't get to walk at her high school graduation because the day got too long, and she was totally overwhelmed by the time they were finally lining up the graduates. That was heartbreaking for all of us, but asking her to push herself would have likely just resulted in a massive panic attack and/or seizure. 

Friends and family are always understanding and kind, but we always feel bad when we have to cancel at the last minute, and with epilepsy it's always the last minute. There's very rarely any sort of build-up that warns us of an impending problem. It's not like coming down with a cold. You're dressed, have keys in hand, or actually already in the car, and the seizure hits. If it's a small one, we can usually carry on. If it's a big one, and especially if we have to use a rescue med, she'll be too tired, and knocked out, to go anywhere. There have been times that we've had to let her sleep off part of it in the car, before she would be alert and physically stable enough to walk into the house.

This is definitely a very short list of the reality of our epilepsy experience. I think it is the very random nature of the condition that really makes it difficult. There are no two seizures or situations that are the same. At any given time, there can be a new symptom, a new trigger, or a new manifestation. We never know what will happen next. We are not the type of people who flourish under stress. We all prefer a routine, and epilepsy is anything but. We have been forced to adapt to a very random, and sometimes intensely scary, life. 

The best thing we can do is just always be sure that we have on hand all of the items we might need for the next seizure. I always have a magnet for the VNS, a vape pen, a towel, and a dose of cannabis oil. We now keep a screw driver next to the door of Rachel's room. There is a level of vigilance that never goes away. It can be exhausting, and yet the anxiety can keep us awake, when what we need most is sleep. I have learned to sleep with the static of the video monitor next to my head.

I sometimes wonder if I'll ever fully adapt to being the caregiver of someone with epilepsy, but I also never want to accept that it won't get better. I fight the reality that this is how it will always be for us.

Purple Day Reflections

 

  

March 26th is International Purple Day for Epilepsy. To show support and solidarity for Rachel and all those affected by epilepsy worldwide, we wear purple, and share first aid and other information about seizures. As a family that lives with epilepsy and its effects on a daily basis, Purple Day is every day, and we are always taking every opportunity to advocate.

Purple Day was yesterday. The above photo is of Rachel, wearing her purple, and Stewie, wearing his nap. It's one of his best skills. Next month, on April 25th, to be exact, we will mark 14 years of seizure experience and epilepsy education, both for ourselves, and for everyone around us. 

I don't mind telling you that I hate this "anniversary." I really do. Rachel's first seizure marked the beginning of a long and painful road for all of us. We have met some amazing people, and experienced things we never would have otherwise, both positive and negative, but I have to be honest here...I would give all of that up if it meant Rachel never had to experience another seizure in her lifetime. I have every belief that each of the amazing women I've met through epilepsy support groups, who have been there for me in the worst times, would say the same thing. "I love you, girlfriend, but if it means my kid would be cured, I'd cut you out of my life." Cold? Maybe. But I'm not gonna lie.

I use these anniversaries to reflect on each year's progress, and consider what, if anything, we could be doing better. Where might we be able to reduce a medication dosage? Do we feel the doctor is being aggressive enough in his treatment? Or, too aggressive about pushing to try yet another medication or implant? 

The photo below shows Rachel's current medication regimen. On the left are her cannabis oils.L to R: High CBD, 1:1 THC to CBD, and High THC rescue oil. The pill boxes contain her morning and evening handfuls of pills, and this is after two medication reductions this year. 

 

When we see the neuro again in a few months, we're going to consult about making another small reduction in her Keppra, which is known to contribute to emotional issues. Since the last reduction, Rachel's mood has improved, she's not having as many panic attacks, and finds it easier to cope when she's feeling overwhelmed. 

So, another Purple Day has come and gone, but our Purple Life goes on.

Breathe, Baby

Life seems to have been extra busy lately, but this week, in particular, has been downright hectic.

Rachel had an appt. with her neuro on Monday, in Portland, mid-morning, which meant no nap until we'd returned home, and both of us managing the stress that comes along with the hellish traffic in that particular municipality. We're all Oregonians here, but some of us don't seem to handle driving in rain all that well, and traffic was suffering more than usual.

Tuesday we drove south to Eugene, and my rheumatologist, where I thought I had an appt. at noon. I was wrong. It's supposed to be next week, but they weren't very busy and worked me in, bless their hearts, which included getting a steroid injection in a very unhappy finger joint. So, two days of long drives and doctor visits, in the pouring rain. 

Rachel reads with elementary school kids on Weds. and Friday mornings, so Weds. was reading, we had to do a grocery run in the afternoon, and then we had a rep. for a carpet installer come out Thursday evening to measure the house for carpet and linoleum. That meant some extra clean-up had to be done beforehand. Today is Friday, so more reading, and tomorrow I'm driving south again, to help my folks set up wi-fi in their new rental. Rachel will stay home with Dad.

This evening Rachel started having a seizure, and it pretty quickly became apparent that it was going to be a bigger event than is customary for her. It started as a pretty standard complex partial, but then she stiffened totally, her eyes rolled right, and her head turned. She held her breath, and just as her lips began to turn blue, she took a shallow breath. Brett and I were both quietly urging her to "breathe, baby, just breathe." 

I ran to the fridge, and got a syringe with her high-THC sublingual rescue oil, and squeezed a small amount into her cheek. Soon Rachel was breathing a little better, and relaxed. Her oxygen level came back up, but she was shivering hard, and was really out of it for several minutes. Stewie hovered nearby, worrying, and occasionally giving her hand a lick.

Finally, Rachel fell into a more natural sleep, for about 10 minutes, waking long enough to take her evening meds, use the bathroom, get on jammies, and crawl into bed. She asked me to just sit on the edge of her bed for a few minutes, while she worked on calming herself, as her heart was still beating pretty hard, and she was having some anxiety. I was happy to do that, of course, and would have sat there all night, if she needed me, but she told me I could go, so I kissed her head, turned out the light, and came back to the living room, and the monitor, so I could listen to her breathe.

Bravery

This meme showed up on Facebook quite some time ago, and it immediately struck a chord with me. I've been saving it, even considering having it tattooed on my back, for a long time. There's a post in this meme, and it's been swirling in head, lacking cohesion, fighting me, and feeling sticky, for several days now.

I don't think of myself as being particularly brave. I think that I'm just doing what anyone would do if they were in my position, because, really, what choice do I have? Would I NOT be here for my daughter? Would I pack up and leave my family? Would I not do everything I can to improve Rachel's quality of life? That's not bravery, that's love and commitment.

Rachel is the one who's brave. She's the one who lives with the demons in her head. The ones called epilepsy and anxiety. She lives with the medication side effects, the self-doubt, and depression. She wakes up every day, and makes the decision to keep putting one foot in front of the other, to actively work on the anxiety and panic, to put herself out there in public, and learn to cope with the crowds and noise, without panicking.

Synonyms for bravery: courage, daring, dauntlessness, fearlessness, guts, heart, intestinal fortitude, moxie, nerve. I can see every one of these in Rachel, every day. I know that there are people in our lives who see only an over-protected hothouse flower. They don't see what we see in her when they're not here; what she lives with, what she goes through, how she works to overcome her challenges. No one will ever know how hard Rachel fights to have her best life.  

Rachel doesn't even know how brave she is. She just lives her life, and inspires me every day. 

Call Me The Dragon

Fruit bouquet, with alien

This post has been stewing in my head since yesterday. We spent Rachel's birthday absolutely spoiling the crap out of her, or so I thought. Her birthday lasted about 4 days, what with all the shopping, lunches, dinner, etc. Every now and then I'd do a little adding up of what we'd spent, and cringe a little at the result. Still, at age 22, she doesn't drive, so we've never had that expense, she's not a shoe maven and doesn't spend a lot of money on clothes and frivolous girly things. 

This morning I was talking with my Mom, and she was asking how things went yesterday, and how Rachel had handled all of the attention and excitement. We talked a little bit about this photo, and the delicious fruit bouquet. We giggled about Rachel's taste in t-shirts, and agreed that whatever she likes to wear is just fine with us. 

Then I said out loud what had been in the back of my mind all day yesterday: Life is short, and people who live with epilepsy often have lives that are cut off in their prime. We never know when Rachel might be taken from us, and I intend to enjoy every day I have with her. She's not spoiled, and doesn't take for granted all that we do for her. Rachel is, as ever, our sweet, loving, sunny sweetheart. 

There is no way of knowing how long Rachel will live. Obviously, we hope she will outlive us both, but no matter what we do, which meds she takes, or how well we monitor her, epilepsy could take her life between one breath and the next. That is what terrifies us, and makes us appreciate every day, and worry every time she's out of our sight. 

Overprotective, hell yes. When you have a treasure in your hands, you guard it with your life.

Happy Birthday, In Moderation

I have a little time to write, but not much, so I'll keep this brief. I wanted to scribble down some of my thoughts on this day, Rachel's 22nd birthday.

As with everything in our life, we have to plan everything we do in advance, and yet be ready to alter or cancel those plans in the event of seizures and anxiety.

Today the plan was to make Rachel her requested birthday breakfast of popeyes (birds in a nest, among other names for it), followed by a bath, and then her morning nap. Then we were going to drive to the Woodburn Company Stores (an outlet mall a little way from us), visit Build A Bear and have some lunch, then return home for bit, and have dinner out at a special place.

So far it's gone pretty much according to plan! Rachel hasn't had a birthday in the last several years that didn't end with a seizure or panic attack. The excitement and over-stimulation tend to tip her right over. 

So, it's now just past 4:30 p.m., we've had our breakfast, early nap, bath, did our shopping (BAB had a 2 for $20 special, so two bears), checked out a few other stores at the mall, had lunch at a very crowded and noisy cafe, came home, Rach was surprised with a fruit bouquet instead of a cake, she played her new Harry Potter Kinect game, and now she, Stewart and Brett are all napping for a bit before we all get ready to go out for dinner. Whew! It has been a busy day for people who don't usually go at this pace.

Rachel has held up very well, so far, but I did suggest the afternoon nap, and I do hope that it serves to bring down the stimulation overload, so that she can enjoy her dinner out, and end the day on a high note. 

Living in E-land means never winging it. That's a recipe for disaster. We live a deliberate life, we don't socialize overmuch, and we keep a routine as much as possible. I have learned to love boredom. Excitement in my home is usually an emergency with Rachel. 

We love our quiet rut.

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.:/