Sunday, June 25, 2017

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. 

Monday, June 19, 2017

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. 

Friday, May 26, 2017

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.

Sunday, April 30, 2017

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.

Wednesday, April 12, 2017

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.

Monday, March 27, 2017

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.

Friday, March 17, 2017

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.