Category: epilepsy

Water Matters and Other Great Lessons from the Day

It’s been hanging out around 90 degrees in Rochester today. It wasn’t a good day to leave my water bottle in the hotel room. It was good that I was smart enough to wander through the Arts Center rather than go with my original idea of taking a longer walk along the river. I suspect that feeling of being worn out and the headache that came about by the time I got back to hotel room a couple of hours ago might have moved into seizure territory had I done differently.

It’s funny. I take much better care of myself now than I used to. Not having my water bottle didn’t mean that I didn’t drink water today. I had a sparkling water with lunch and a couple of glasses of water with dinner as well as the water I’d drunk before I left the hotel and a smoothie in the morning. Once upon a time I might have had the smoothie, but lunch and dinner probably would have included a cherry coke or some other sugar and probably caffeine laden poison. Now water just makes sense to me. It’s the thing that I drink most. I don’t eat much junk food either. It really is something that I have as a treat and even then I tend to go for just a bit of something really good. Life has changed me. I see my relationship with my body differently and treat myself better. It’s good.

Anyway, today’s adventures at Mayo were mostly pretty simple. I started with my blood draw and nasal swab. The blood draw waiting area had the grumpiest group of patients I’ve seen at Mayo, but I didn’t find it bad at all. My blood was drawn by a student and she did really well. I was impressed. I know that my veins can be tough and even that early in the morning I was wondering if I was a bit dehydrated.

The nasal swab was quick. It sucks, but that’s no surprise. It’s just not going to be pleasant to have a q-tip shoved up your nose. That’s an obvious reality. I left there thinking, “I am really glad that I don’t have Lauren’s (the q-tip person) job. Can you imagine putting q-tips up people’s noses all day? Well, I am thankful that she does it and hope that she finds reward in her work.

After that was a trip to the allergist. She’s not convinced that the diagnosis of DRESS Syndrome that I got back in January was correct. She’s wondering too why my rash reappeared several times since then. But, since it’s gone right now it’s a bit tough to tell. She’s going to keep studying the information that we have. I’ve agreed to see about getting a skin biopsy if the rash reappears again. Personally, I think my hope is that whatever it was is just done.

The most interesting thing though about the visit with the allergist wasn’t so much what I learned about the issue, but what I learned about my memory of the past few months. Thankfully, she could access all my records because even with my notes I had jumbled dates and wasn’t even certain what month things happened. It was really interesting. It leaves me wondering how much my memory is being impacted by my seizures and medication and just how much is the stress of life these days, but it was a mess. I suppose I will learn more when I have my memory tests next week.

Until then, I am on vacation enjoying the sites of Rochester and, honestly, mostly just taking advantage of being in a larger city than my current home of about 5,000 and eating a whole lot of good food at all the sidewalk cafes!

Be well!

Stories from the Sugar High

Yesterday was the first day of my Mayo Clinic “retreat.” Ann and I arrived at my hotel shortly after noon. It brought back memories of the dorm rooms at UWSP, not bad and it provided a good, not too expensive place to sleep. Ann wanted to get back before rush hour in the Twin Cities and I couldn’t eat lunch because of my PET scan in the afternoon so she left and I took the opportunity for a much needed nap.

After my nap I walked to the Mayo campus and, with the guidance of some good Mayo workers, found my way to Charlton North and the area where my test would take place. It was my first PET scan, I think. I’ve done MRIs before. Sometimes I am fine. Sometimes I find the tube and all that it entails just a little crushing, not to the point that I need sedation, but just to that point where I need to remind myself that yes I can breathe, it will be okay, it’s almost done. Yesterday though was very smooth, an interesting journey through my mind.

I don’t quite understand how the PET-MRI works, but for those who haven’t experienced it here’s what happens. With a PET scan you get an injection of fludeoxyglucose more simply known as an F 18 injection. It’s a radioactive sugar injection. Yes, I got to mainline sugar! Then you sit in a dimly lit room for about a half hour not doing anything, but waiting for the F 18 to just work its way through your body. It’s a nice opportunity for those who meditate and those who keep an internal radio station of all their favorite songs. I do wonder how more antsy people especially kids handle it though?

Then, the staff walk you to the room with the scanner. It’s a long tube. They help you put in ear plugs and lay down. Then they gently make things comfortable, sort of packing you in like a holiday gift. You can’t move while the scan is happening because it will mess with the pictures. Once you’re all packed in they hand you a ball to squeeze if you need anything and the fun begins. They go to their control room, turn on the scanner, and slide you into the machine.

I closed my eyes as I entered the machine. I wanted to keep myself centered and not to see how small the space was around me. The noise of the machine was loud. It began with a frequency that felt like woodpeckers just outside doing their work, moved to sirens, and to other sounds, came back to the woodpeckers only they’d moved to the left or the right. The sounds kept changing. Then came vibrations. At one point it almost felt like a the tremors surrounding an earthquake. The interesting thing though was what was happening in my mind.

As the test started I tried to think calming thoughts, but I quickly realized that as the sounds and vibrations changed so did what was happening in my mind. Soon I just opted to go with the film that was playing for me in my head. It was a great show. Much was going through pictures of my life. There were a lot of little things; remembering the front steps where I used to sit as a child, the glasses with the wild animals painted on them in my parents’ liquor cabinet that we used for social gatherings, my first communion, just a whole array of generally happy and comforting things from my life.

Then, late in the scan, we came to a point where it changed. It didn’t get scary or anything, but the memories went away and in their place came colors, mostly blues and yellows I think. They were more vibrant than any I’d ever seen seen before. They shifted and changed, a sort of flowing cloud I suppose. It made me think a couple of things. First, I thought “wow, this is what psychedelics are like!” Then, I thought “yep, left front temporal region, I think they just found where my seizures are located.”

I’ll be interested in finding out if what I saw in my mind really matches what they found in the scan. Our brains are incredible things. This has been a fascinating journey so far. I am hoping for mellow day today with blood and COVID tests and a visit to the allergist.

Be well!

Another Mayo Holiday

The Mayo Clinic is becoming my new holiday spa. It’s where I spent New Year’s Eve and while I probably won’t really be in the hospital on the 4th of July I’ll be in Rochester between appointments.

I’m heading to the clinic today on what feels like an adventure to start a new life. I don’t know yet. Today just begins another round of tests. I’ll be doing a PET scan today. I think it’s my first one. If I understand correctly, they inject sugar into my brain for the imaging. I don’t quite remember why, but as a lifetime sugar junkie the thought of mainlining the stuff is intriguing.

I am standing on a precipice it seems. These tests could tell us that I am a candidate for surgery or maybe an implant, something to correct my seizures, maybe just to lower the frequency and intensity or maybe to render me seizure free or they could tell me there isn’t much to do at this point other than maybe try more medications and hope. I could fly or I could tumble and be left to just keep pushing my way through the brush far below.

It’s a weird time to be standing on this precipice and hoping for the best in new life. Next week, the day that I start my visit to the epilepsy monitoring unit, will be the thirty-sixth anniversary of my mom’s death. How weird to spend that day laying in a hospital bed all hooked up with wires. But, it made sense to me to take the opportunity, celebrate her life by reclaiming my own. I’m taking my crocheting with me so I might spend some of the day with her crochet hook working on a new project and remembering all those wonderful nights sitting on the couch cuddled up beside her reading or maybe working on my own little project as she worked.

Then there’s Dad. He doesn’t know that I’m going back to Mayo. As a matter of fact he doesn’t know much anymore. Dementia has taken him away. Because of COVID-19 no one has been able to visit him, though we’re starting to be able to make video calls. My sister Jean made the first call last week. His care staff say he’s doing well and is a really sweet man. They’ve got him caring for a baby doll and he’s still wanting to get to work on the farm. You know, there’s something in that, something beautiful. He started out his life working alongside his father on their farm. It was always his dream to follow in his father’s footsteps. He never had the dairy farm, but most of his life he farmed. As a little boy, he helped his dad. When he got a little older, after his father passed away, he hired out to work for local farmers. After he married he worked with his father-in-law and eventually on his own. Along the way, he helped my brother get started farming. He kept farming for years. Now, he’s still following that dream in his heart. That, to me, seems to be true love.

I’ll be getting some memory tests while I’m at Mayo. My seizures and my medications both can impact memory. It’s strange to watch my dad from afar and think about what’s happening in my own brain. I suppose maybe my best hope is that if I do travel the same path of dementia that Dad has that I’ll have a nice baby doll and I will have found my dream to pacify my days. Still, I hope never to go that route. A long time ago, I decided I wanted to live to be 106. I don’t why. It just seemed a nice age and like it would give me enough time to do all that I wanted and be ready for the next adventure. It still makes sense to me. I still want 106 with good health and then just to be done. If I can’t do that then I hope I at least have fun.

Well, it feels like time to actually get up and maybe start preparing for the adventures of today. Take good care all!

Which Comes First, the Brain or the Gut?

Which comes first, the brain or the gut? It’s a valuable and confusing question in my health journey these days. I wish I knew the answer.

I made another trip to Mayo last week to meet with Dr. Cascino to discuss my epilepsy journey. We agreed that we’re not happy with the results that I’m getting from my medication and that, with my history of negative reactions to medications, it’s time to look at other options.

So, while I’ve been spending the last few weeks trying to detox to clean up my gut and recover from my latest recurrence of DRESS Syndrome a few months back, I now find myself getting ready to go back to Mayo for more tests and the possibility of a whole new plan to address my epilepsy, maybe including brain surgery.

I don’t quite know what to do with my diet right now. I’ve mostly been sticking to it. I figure that it’s a good thing to give my gut and, by extension, my whole body all the support that I can. But on the flip side I find myself thinking, why not wait until I know what’s going on with my plan of care? I think for the moment I am just going from moment to moment and maybe it’s giving me a chance to learn.

Today, I had a bagel with cream cheese. Shortly after, I noticed the bloating and heaviness in my gut. I don’t know if it was the dairy or the grain or maybe some other ingredient, but I strongly suspect that my body wasn’t impressed by the bagel though I’ll admit it tasted really good. Eating a little something like that on occasion right now probably isn’t all bad if I’m writing about it and learning from it, discovering what I can and can’t eat and feel good. The trick is to maintain a diet that is vast majority fruits and vegetables.

I did notice today, before my bagel discretion, that I am finally starting to regain my energy again. I’m walking more, starting to do yoga a bit again, practicing my guitar a bit more, and napping a little less. I’m slowly coming back to normal. I am hopeful that I can overcome DRESS and that with the help and guidance of my Mayo team I can become seizure free too. It’s exciting to imagine what that might be like to regain even just a bit of my former self. I’ll never be a decade younger, but there is some hope that my mind will work a bit better again. I guess we’ll see. Life remains an adventure.

Day 7 of Detox

It’s day seven of detox and day two of being sick. Two days in a row of barely eating must have some plusses for detoxing, right?

It’s been berries and coconut milk for some meals and cauliflower or cauliflower and beans for others if I have anything at all. Tonight I went wild and had some sweet potato chips that I baked the other day.

I am writing this just to keep my place, so I can look back and know what happened with my detox.

Detox: The Halfway Point

Yesterday, I had plenty of energy. I did a lot of stuff. Today, I slept in. I’m usually out of bed somewhere between 6 and 7am. Today, I woke up a few times, but just went back to sleep. I didn’t get up until almost 9am. I didn’t get much of a nap today, just laid down for a bit and listened to a meditation. I don’t think I fell asleep at all. Now, at 7:30 I am exhausted.

I didn’t do much today. I could feel a slight tired ache in my muscles. Doing yoga this afternoon reinvigorated me for a while, but it was definitely a lower energy day than yesterday. Still, a lot better than just a few weeks ago so I am happy. Plus, I expected that there would some down days. I know my body is going through a lot. Just in the last five days I’ve lost 4 pounds. It will take some energy to find balance and it’s important that I allow myself rest.

Buddy and I spent a little time at the dog park this morning. We took a walk this evening. This afternoon I tidied up the room that I’ve been using as my yoga studio (sounds much classier than spare bedroom, doesn’t it?). The tidied up space really makes for a much more grounded practice. Otherwise, all I did today was laundry, guitar practice, and a few little kitchen projects. I grated some cauliflower so I’ll have “rice” ready for the next day or two. And, I made sweet potato chips so I have something to snack on.

Beyond that I sat and relaxed watching videos and reading about AIP. I’m getting ready now for the switch in a few days. It’s confusing. I was looking at recipes and there seems to be some inconsistency on what can be eaten. Maybe that’s because of the process of elimination and reincorporation. Some people may be at a stage where they are eating seeds and others aren’t. The individual really has to decide what recipes fit their version of AIP. As I’m just getting into it, that means a lot asking myself “Is this on the list of things I can eat or not?”

I am glad to say that my longing for cheese from day one seems to have melted away. Today though I wanted something sugary. It probably didn’t help looking at AIP desserts. I’ve been totally sugar free (besides the sugars in the fruits and vegetables I am eating) for the past five days. Today, I’ll admit I added about teaspoon of maple syrup to a bowl of mixed berries and coconut milk. It was delicious! Sometimes it’s important to decide what healthy indulgences are okay. I figure a teaspoon of maple syrup on occassion is just fine.

I hope you are finding your healthy indulgences and taking good care of yourself today.

Day 4 of Detox

Saturdays can be really nice. Today was one of those days. A couple hours at the dog park some of which I got to spend reading while Buddy wandered about reading the pee-mails that other dogs had left and just enjoying himself. We spent some time training. I need to learn some new tricks. Buddy is a smart dog and at almost two years old he’s already gone through my limited arsenal of dog entertainment. I’d love to see what he is capable of. We wrapped up with Buddy getting some energetic play with a couple other dogs. At home we made more dog treats, which brought Buddy great joy. I also practiced yoga, did a little cooking (another veggie bake with carrots, garbanzo beans, zucchini, broccoli, green onions, portabella mushrooms, grapeseed oil, and a mix of spices), practiced guitar, finished up my assignments for my integrative health class, went for a walk, and just relaxed.

As I look at the list, it seems like I did quite a lot today especially as I’ll probably still be awake for another 3 hours or so doing stuff. That’s amazing to me. Just a few weeks ago I barely had the energy to move. I took a nap today for about a half hour. Two or three weeks ago, I was napping about two hours a day and barely getting out of bed.

Again, I can’t say that just a few days of detox has brought me back to life. I was getting better before the detox started, but I think it’s helping.

Reflections on the 3rd Day of Detox

There wasn’t much remarkable in today’s meals beyond the great joy of having cherries for dessert tonight so I will skip regaling the world with the details of my menu. I suspect that I will know tomorrow whether or not I went overboard with the cherries for dessert, but they were really tasty.

The detox continues to go smoothly. I credit this to already having a largely clean diet. I remember it being much more difficult four years ago when I removed the nine foods that appeared on my list of allergies when I was tested. At that time, I was eating a lot of processed foods and just fast food. I still have some foods that I can’t eat right now tucked away, but they will either be given to my students and friends, tossed, or made into treats for my dog, Buddy. He was quite impressed with the homemade cheesy dog biscuits that he got last night. I was impressed too. I was able to grate a cup of frozen cheddar without a huge craving to eat some myself. It helped that I had frozen it making it somewhat less accessible.

Today, I spent some time studying the autoimmune protocol further and deciding on my grocery list for the remainder of this stage of detoxing. Right now, I’m just doing a basic detox. I have seven days remaining. After that I plan to start AIP. I realized today, as I looked at the foods lists, that’s when things may get challenging. I looked at what I’ve been eating over the past few days and found amongst my foods; onions, tomatoes, eggplant, and beans. All of these aren’t allowed on the AIP and all of these, except eggplant, are regular parts of my diet. I guess the next seven days are my time to prepare and create a plan. I think I will need one along with some creative thinking on new eating. I am thankful that there is a growing collection of resources to work with and lots of recipes. I look forward to the challenge.

Be well and take good care.

Detox Day 2

I may say something totally different in a few days, but right now detox is actually kind of tasty. The morning started much like yesterday, with a smoothie. This morning it was just raspberry, carrot and spinach. A simple, healthy, and tasty way to start … Continue reading Detox Day 2