Home > Blog

Ben and I took off for Steamboat Springs, CO yesterday. This is the trip I won at the Warren Miller show back in the fall — it’s completely free. =) Which is good, considering how TERRIBLY I skied today.

My problems started last night. I could NOT fall asleep. I was tired, exhausted even, but I couldn’t sleep. AT ALL. At 4:30 am, I decided to take Lunesta, but I was too tired to get out of bed and retrieve it. At 5:00 am, I realized that I’d brought it in to the bedroom and it was all of eight feet away from me. I took it, and twenty minutes later I was asleep. However, when you go to sleep at 5 in the morning, it’s difficult to get 10 hours of sleep (or even eight, as is recommended on the Lunesta packaging).

At 10:45, Ben was ready to get up, so I roused myself from my slumber and joined him for breakfast. We ate at a joint called Winona, which was a pretty nice place to have breakfast. They’re famous for their cinnamon rolls, and I LOVE cinnamon rolls. It was delicious.

We reached the slopes pretty late — probably around 12:45 or so. Ben directed us to the gondola. It took a while because they’d turned the speed down due to wind. Once at the top, we took a green run down to the next lift on Ben’s itinerary. It was an inauspicious beginning; I snowplowed down the entire length of it. It was a GREEN.

It started snowing on the lift. About 70% of the way up, the wind picked up, and we were in white-out conditions. “It’s too windy!” I shouted.

“It’ll be fine 20 feet down from here,” Ben promised. Well, it wasn’t. Since my strokes, I’ve liked warming up on nice, easy, groomed, blue runs; this wasn’t one of them. This was 2000 vertical feet of moguls. I haven’t skied much at all this season, and my legs were burning. I also couldn’t see.

You’ve probably heard me complain about my sensitivity to sunlight. Well, nobody in the goggles industry has. I’ve asked at the Sports Authority and a Quiksilver joint in town, and all they say is “I’ve never heard of anybody dyeing lenses before. Why?” Well, let me tell you, it is HARD to see on the slopes. Today, it was cloudy, which is usually good for me; however, there were two problems. (1) It wasn’t uniformally cloudy. The sun poked its head out every once in a while, which necessitated me digging my sunglasses out and putting them on. Yes, it takes sunglasses underneath my goggles to block out enough light. (The goggles help protect me from the wind as well.) (2) When it’s cloudy, there isn’t enough contrast. Then, all I see is green circles with sparkles. I don’t know what this is, but it pre-dates my strokes. It’s really annoying.

So there I am on this blue run, essentially blind, with legs that feel like I’ve dipped them in acid. I kept stopping to drain the lactic acid from my legs. After about 10 minutes of this, I realize that I need to get off of it. “Hey, Ben,” I greeted him as I pulled up to him. “I’m going to go to the left and see if I can find some groomed runs.”

“There aren’t any.” Great, I thought. Maybe I’ll just die here. Maybe you could run me over on your snowboard so I won’t be stuck in this blizzard.

“I don’t believe you.”

“Get the map out.” I did. It doesn’t differentiate between groomers and non-groomers, of course. (They vary them throughout the season.) “I’m afraid you’re stuck.”

So we continued down the slope. Despite my begging Ben to just go ahead and ski without me, he wouldn’t hear of it. It was sweet and I appreciated the sentiment, but at that moment I simply wanted to sit down and cry. Get me off of this mountain, I prayed.

We managed to make it to the bottom without incident. “What’s your pleasure, sweetie?” my husband asked.

“I want to go home!” I said. “You can keep skiing. I’m not going to be mad if you do; I really WANT you to enjoy yourself on this vacation. I’ll meet you back at the condo.”

“No. Let’s figure out how to get to the bottom.” We knew we needed to take an intermediate lift to return to our condo, so we started there. While on the lift, I read a sign on one of the poles. It went like this:

“TIRED? Consider taking the gondola to the bottom!”

“Ooh!” I said, pleasantly surprised. “Let’s do that!” That sounded perfect We could just sit on the gondola, let our legs rest, let our eyes adjust (the gondolas have sunshades on them) and … we’d be back in no time.

“You want to take the gondola?” Ben asked incredulously. “Let’s at least take a green run.” He got out his map. I argued a little bit, but it wasn’t worth it. I was too tired. Down the hill we headed.

We reached a resting point with a bench at one point.  As we skied up to it, I exclaimed “Holy cow, look at my knee!”  It was shaking with an amplitude of about 2 inches.  Wow — I really WAS tired!

In the end, it worked out OK. We arrived with no broken bones and no concussions. My confidence, however, has been crushed. I used to ski double blacks, and I would have today if it weren’t for these dumb strokes. Instead, I struggled on the greens. I was scared, frightened, and terrified.

Well, hello there! I’ve got pictures from Ben’s 29th birthday to show you, but first I want to introduce you to Verne and Maggie.

Verne was my new sewing machine. Why a NEW sewing machine? I was sick and tired of detangling the thread from Matilda. So I splurged. (Well, not so much *I*. More like *Ben*. Thank you, Ben.) Verne was a Singer Confidence 7470 featured on “Martha Stewart.” (Which did not help sell it to me.) It was, however, $100 off at JoAnne’s. Moreover, they’ve got forums online and everyone said that it worked perfectly. “No more of it getting stuck!” they reported. It’s electronic. It’s the cheapest version of the electronic machine. Sold.

And Verne worked perfectly. For about the first two and a half weeks. Two days ago, he started sewing slower. I was puzzled, but didn’t think much of it. Then he shut down altogether. It felt like something was stuck — something sticky. I couldn’t find it. And I tried.

So, back to JoAnne’s. “My machine is stuck,” I said. I showed them how you couldn’t even move it with the dial on the side.

“It IS stuck,” the saleslady told me. “Why don’t you just go get a new one. It isn’t supposed to be like this.” That was easy. I figured they’d fix it, which would require a week, and that I would be out of a sewing machine. So I went to the back of the store and found a model 7470 sewing machine.

Now, to exchange it. I also had something to return: a ruffler foot that didn’t fit. The first saleslady, Juliet, did something on the cash register and handed me a receipt showing -$16.21. I found this odd considering the foot cost $14.99 and I’d used a 40% off coupon on it. Also, it said “Singer Conf” on the ticket. “What’s this for?” I asked.

“The foot.” Juliet returned to her work.

“Uh … I don’t think so.” I explained that I’d paid less for the foot than she’d refunded me. She examined my receipt again.

“Oh … you gave me the wrong receipt.” Uh, yeah. The one she was looking at was for the sewing machine. The one for the foot was in her hand. She called over the older-than-18 saleslady for help.

“I’m so hopped up on cold medicine,” Juliet explained to her, “that I can’t think straight.” That explains it. So, after about 20 minutes of fiddling with my receipts, I got my new sewing machine.

I told Ben and Dad about my experience at dinner last night. “What about the pieces of Verne?” Ben asked. “Like the bobbins and the feet that came with him?” I explained that the pedal seemed more significant to me, but because I’d expected them to fix the machine I’d left them at home. And that I cleaned out the box with the bobbins and accessories at the store.

“They never asked,” I shrugged. “And honestly, it would’ve added half an hour to my visit. It wasn’t worth it.”

My new machine’s name is Maggie. I hope she doesn’t fail, because it’s becoming increasingly difficult to name them.

I finished HBOT on Thursday!  There are two benefits, as far as I can tell right now (it may take up to two months to see all the effects):

(1) My handwriting has improved.  On a scale of 1 – 10, I’d say it WAS a 2 (where a 1 is what my handwriting used to be — small and pitiful), and now it’s a 3.5.

(2) The “fog” is gone.  This takes a little explaining, and pardon me if that’s not too good right now; we just had a big Easter dinner and I’m pooped.  After the strokes, I felt like my head was in a fog — I couldn’t think straight.  I assumed the fog came hand-in-hand with the fatigue (see below), but it’s pretty much gone now.  !!!  It’ll return when I’m REALLY tired, but for times like right now when I’m tired but not too tired, I’m OK.  I can sew for hours now.  I’ve been kind of tired this week — again, more about this below — so I’ve been sewing in the afternoon, eating dinner and watching TV with Ben, but then I return to sewing later at night.  It feels really good to be able to think clearly again.

Things HBOT has not helped:

(1) My sensitivity to sounds, especially crowds.  I still hate them.  However, I’m tolerating church fellowship better now.  I don’t know why this is, but I’ll take it.

(2) Sensitivity to light.  I wish I could just turn off the sun sometimes.  It’s too bright.  W changed daylight savings time, and it has me more pissed off than anything he’s done in the past year.  I don’t want more sunlight!  I want sunset!  Or curtains!  Extremely dark sunglasses!  You get the picture.

(3) FATIGUE.  This is really disappointing.  I still get exhausted.  Easily and thoroughly.  This is the symptom that I most hoped would be zapped by the therapy, and I’m terribly mad/disappointed/angry that it didn’t.  It sucks to be tired all the time, but I’ll spare you the diatribe.  Suffice it to say that lifting the fog, while a step in the right direction, doesn’t cut out the tiredness.

So that’s the story … ask again in two months, when all the results will be in.

Jason called me a couple of days ago to tell me he’d been thinking about me! I love Jason :) But the thing that made me feel REALLY special was what he had to say.

A ski tour came through his town in Idaho, and along with it came people lecturing about being “green”. This doesn’t mean jealous or naseous; it means environmentally friendly. One of the lectures was given by a middle school teacher who has Crohn’s disease, an autoimmune disease that gives you diarrhea and stomach pain. There’s no cure; once you’re diagnosed, you just have to live with it. They put you on steroids and anti-inflammatories, which *sometimes* work. YUCK!!!

Anyway, the woman’s point was that her chronic illness was very similar to the perils of global warming. “People with inflammatory illness personally face what all of humanity faces with climate change: limits to available energy are tangible, the future suddenly becomes far less predictable, and loss and grief will be close companions.” She said that her middle school students often have NO IDEA that global warming exists, and when they find out, they kind of freak. She’s been there! She had no idea what Crohn’s disease *was*, let alone that SHE might be a victim. Her illness helps her understand her students’ reactions and find ways to help them.

Why did this make me feel so good? I couldn’t figure it out for a day or two. I really love Jason, so hearing from him is flattering. But there was something else about the conversation that comforted me: he recognized my strokes as a chronic illness. They’re not technically, because my doctors haven’t found any illness that caused them, but I have to live with the effects of stroke for the rest of my life.

Jason said he’s watched me progress through the stages of grief through my blog. I’m not sure how I feel about that; I’m very open about my condition, but I’m not sure that I want everyone knowing that I’m depressed or angry. Make no mistake; I have been tempering what I write on here. If I wrote about how depressed I was two years ago, I doubt you’d be reading anymore. I’m sorry if I’ve been whiny. Also, please note that some things I write — for instance, the story I relayed about the peanut-butter-banana milkshake I made for Ben while he was sick — I include just because I think they’re funny.

Anyway … I have been through most of the five stages of grief. Denial? You betcha! After the second stroke, I was oblivious to the additional stress it was causing me. Even when it was staring me in the face. Ben asked me a series of math facts like “What’s the cube root of 1000?” while I was in the hospital. 100 is not the right answer. This was a neurological symptom, not an emotional one, but it was DEFINITELY there.

Anger and bargaining, not so much … I mean, who could I be mad at? Nobody gave me the strokes. However, I guess I could be mad at God. I’m not, however, nor have I ever been. And thank goodness! I could bargain with God — “If you take away my strokes, I’ll join the Peace Corps and move to Ghana” — but that’s ridiculous. I suppose you could say that I will eventually have to go through these feelings, but I don’t think so. (And I hope not.) It reminds me of when people assume that I was scared when I went to the hospital. I wasn’t. I was remarkably calm. I’m not angry, either. And I don’t need to bargain.

That leaves depression and acceptance. Depression? Oh my goodness, yes. About the same time my denial started to disappear and I was becoming aware of the changes that had been thrust upon me, I was hit with overwhelming depression. Ben said he could tell it was depression (as opposed to just a very ornery wife) because I cried like fourteen times a day. I was miserable. I thought about killing myself. (Don’t worry; I wasn’t yet to the point of actually DOING it. But I understand why someone would.) Then I started the medicine, and it cleared up! In about four days! That was amazing. Whoever invented Zoloft, you have won my eternal respect. =) (But the side effects sucked, and I switched medicines three months later. The depression came back. I had another week of doom, then *finally* stopped puking and got on a solid regimen of Wellbutrin and a tiny bit of Zoloft. Whoever invented Wellbutrin, YOU have won my eternal respect!)

I don’t know whether I’m at the point of acceptance yet. Probably not. I don’t know if I’m ever going to get there. I mean, my brain is ruined! I would like my basil ganglias back, please! And my energy! My ability to go outside in the sunshine! My ability to be in crowds! I’d like my confidence back! It sucks that I can’t do that stuff anymore. However, I AM getting to the point where I can stand it. I mean, it sucks to be at youth group (where I’m supposed to be the leader) and be stuck on the sidelines, yawning, while everyone else is eating tortillas with chocolate sauce on them/beating each other up/doing whatever else it is that seventh-grade boys do, but … I’m getting used to it. I can now plan my energy so that I’m awake during the 5:30 – 7:30 time slot (or mostly awake). I think about what activities and games we’re going to play and plan ahead for them. Some of them I sit out; the airplane game, for example, isn’t one I’m cut out for. (During that game, you make as many paper airplanes as you can and frantically throw them to the other side of the room. There’s screaming, pushing, and airplanes flying every which way above your head. It’s total chaos — not very fun for a stroke survivor.) However, I love crafts, both doing them and teaching them. At our youth retreat, I brought lanyard and seed bead materials and taught the group how to do those. So … I’m getting there, it just takes a lot of adjustment.

Thank you for listening. And Jason, thank you for calling! It meant a lot to me. =)

Jason also sent me this blog, I’d Like to Buy a Bowel. It’s good — read it. Also, if you don’t mind, could you read this, too? 50 Ways to Encourage a Chronically Ill Friend

After church and a quick lunch, my family headed out into the snow; my parents to Boston, and Ben to San Mateo. It was so much fun to have everyone around; it felt “complete”. Now I’ve got a week all by my lonesome. I’m sick. My stomach hurts. My nose is running like Jesse Owens. I hate being alone! Ben … will you come keep me company for an hour and a half every day during HBOT? Will you hold me when I’m not feeling well? Would you be willing to kiss me (because you can’t catch this cold; you gave it to me.)? NO!?!?! Oh. Well, that sucks. I hope training goes terribly, that you get fired, and that you come home to STAY with me.

But enough of my whining and complaining. Here’s what we did this week! First of all, I finished my skirt. It looks pretty good, if I do say so myself! Here it is:

Second, yesterday we ventured out to Westminster’s Butterfly Pavillion. I’ve been there before, but the pictures are gone, so let me share some of my new ones with you. Here a cuddly-looking creature from the insect and arachnid pavillion outside the butterfly area:

Here are two butterflies. Can you find the second one?

(It’s the leaf to the lower right of the obvious butterfly.)

Here are some more butterflies. The first is hanging out on a sign educating us about the eating habits of butterflies:

The second is on the rotting fruit exemplified by the sign in my last photo:

And I just thought this picture was beautiful:

And this is the one I’m most proud of. My mom got this picture of ME holding ROSIE!!! I don’t particularly like spiders. I have nightmares about tarantulas, usually involving a very hairy one living under my bed. They’re about basketball sized, they’ve got eight *enormous* eyes, and did I mention the hair? However, the girl in charge of handing Rosie over to various people, most of whom would squish her under different circumstances, reassured me that she was very gentle. She does have venom, as do all spiders, but she doesn’t bite. I considered this for about a half hour while I hung out with the butterflies, then decided to head back to take the plunge. And here I am!

Now, for more serious matters. March 2nd marked the two year anniversary of my second stroke. I said something to that effect to my parents and they were underwhelmed, but I think it’s something to celebrate! I’m still alive! And I’m getting better! Yay! For those of you who are curious, here are the remaining effects of my strokes:

(1) I HATE sunlight. I mean *hate* it. It’s just too bright!

(2) I dislike crowds and anything else that makes noise. No baseball games or windows down in the car. (Yet.) This is very difficult because there are usually crowds of people at interesting stuff. Even church fellowship is difficult for me to attend. (And I sometimes don’t.)

(3) My handwriting is still very small.

(4) I’m having trouble with aphasia when I’m nervous. This is really frustrating. For example, I went to dinner and a play with some friends in Boulder on Thursday. Jeff, the officemate of my friend Rebecca, came along and tried to make small talk during dinner. I was tired and nervous — not a good combination.

“So what do you do in Nederland?” he asked.

“I don’t work.” I was trying not to tell him about my strokes but I forgot the techniques that Melissa gave me — saying that I ski and hike, that I’m in between jobs, etc.

“Is that by choice or is it something that you didn’t plan but just happened?” he persevered.

“Umm … I’ve had two strokes and I’m busy recovering from them,” I told him. He was remarkably understanding and asked a bunch questions about them, but I could tell that he was thinking of his grandmother or somebody really old. What was the matter with me? Why did *I* have strokes? Oh well.

But my big aphasic moment was when he asked me about my heart. (I’d disclosed that I had a PFO.) I was trying to describe the catheter that Dr. MacDonald used to implant my occluder and I could NOT think of the words to say it. Eventually, I held up my hands and said, “It goes like this.” I pushed my hands up to my face. “Then he pushes on something [meaning the tube inside the tube], and it goes like this.” I flattened both hands out.

I don’t know whether this is aphasia or some kind of social thing in my brain that got damaged, but it’s really annoying. I KNOW what Dr. MacDonald did, so how come I can’t say it? Especially in front of somebody new that I’ve just met? It’s embarrassing.

However, that’s the extent of my difficulties. =) The HBOT has helped me, and so has another year. The fog of confusion around my head has disappeared and I can think again. (!!!) My energy is slowly getting better. I still have some very hard days, but it’s light years away from where I was two years ago. Interestingly, I think time is the best healer of all. (Unfortunately! If anyone thinks of a way to time travel and speed this thing up, please let me know!) Adderall helps me again. (Not very much, mind you, but it does.) My energy level is way better than it used to be. My initiation is through-the-roof better. I’ve kept the house clean! I’ve made dinner! And I’ve sewed! These may seem like small accomplishments to you, but to me they’re huge. Along the same lines, I’ve had fewer “TV days” — days where all I do is sit on the couch and brainrot. When I’m sick that’s what I do, but generally I prefer to sew. So I AM getting better.

If you’d like to compare this year with last year, feel free.