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.

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. 

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. 

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.