Category: health

Day Four at the EMU

It’s day four now. Still no seizures and no confirmed date to go home. I did get to sleep for almost eight hours last night though. My medications are done now for this trip in hopes of generating a seizure.

I don’t know if it was a good thing or not, but I read some posts on one of the epilepsy support groups that I am a part of on Facebook. Some poor soul is also in an EMU right now, bored, and anxiously waiting for some seizures. She asked others if they’d ever been in the EMU and not had a seizure. The stories were eye opening. That is for sure. Some people have stayed in their monitoring units for more than 20 days. I am going to need more crocheting yarn if that happens! Others have been given vodka to induce their seizures. I asked my nurse about that one. It is a possibility. When I suggested a brandy old fashioned instead she was apologetic and explained that unfortunately it’s not an open bar. Oh well.

Dr. Lagerland and team did their daily visit just a few minutes ago. He’s encouraging me to keep up with doing sleep deprivation, so I am back to the four hours a night if I don’t have some seizures before then. I’m to keep exercising too.

I can tell that my system is wearing down. I started to get twitches yesterday and words are just a little more difficult. Spelling is a bit more of a challenge. I brought out my Ojibwe language lessons this morning for the first time in quite a while and practiced for about an hour. Learning another language at any time is challenging, in a state of sleep deprivation and medication changes it’s a real trip. But, I suspect it’s good to challenge my mind especially now. Besides there’s only so many television reruns and movies that anyone should watch at one time. Maybe today I’ll go back to the Call the Midwife series though. I’ve seen them all, but they’re just comforting.

I put the message out to my online support groups asking what people would like me to share about my experience in the EMU in my blog. I would love for my writing to be more than just an online journal. I would love for it to be a support or guide for others in a similar space. I hope that my readers will share my blog with others facing similar situations, that you will tell me your stories, and that you’ll let me know what you’d like me to write about too. Thanks for reading!

The Continuing Process

It’s 10pm on my third day at the epilepsy monitoring unit. My first visit here was three days. Tomorrow this will become my longest visit. Still no seizures. Tonight I’ll go to bed closer to my normal time. I’m told it’s not good to do sleep deprivation multiple days in a row. I am glad of that. Two nights in a row of going to bed at 3am was quite enough for me. We’ve stopped my seizure meds tonight too. I hope that this step pushes me into having some seizures.

It is so strange to hope for a seizure. I am in probably the safest place in the world to have a seizure, but still I am asking for something that I know gives me headaches and stomachaches and just generally can make me feel like absolute hell. I am also asking for something that I know always has that chance of killing me. It’s not a big possibility. SUDEP is pretty uncommon, but I am a middle aged woman who lives alone and has uncontrolled seizures. That puts me in a high risk category. So, even here in the safest place in the world asking for seizures seems such a risk.

I re-watched the documentary about the history of Mayo today. I’d watched in December too. I was reminded today that Dr. Charlie was the brother who did much of the work on brains. So, laying here in my hospital bed waiting for the seizures found myself calling on the spirit of Dr. Charlie to watch and guide. That’s it, that’s what I can do. I wonder how many patients every day call on the spirits of Dr. Charlie, Dr. Will and their father and the nuns.

What else is there to do with the crazy balance of fear and hope that comes with asking for lightning to strike in my own brain? I suppose I might again look at it as rebirthing in some way. If women looked only to labor, they would never give birth. I need to remind myself that my seizures right now are only the labor that I need to go through, the birthing to my new life. I believe that I will be seizure free. This is just a process for me.

What Would I Want?

Nearing the end of my second day in the Epilepsy Monitoring Unit at the Mayo Clinic in Rochester, or maybe not quite the end. I just found out that I am supposed to be sleep deprived again tonight. I am a person who usually goes to bed around 10 or 11pm. Last night I stayed up until 3 am. Tonight I’ll be trying for 3 am again in hopes of inducing seizures. So, right now I have another six hours to go.

Today I am thankful for all the little things that bring me joy. I’ve been sitting in bed all day, but happily keeping myself entertained. I’m glad I brought Sol (my guitar) with me to Rochester. With the help of a nurse who brought it over to my bed for me, I got Sol out and practiced for about an hour today. What a wild thing to be sitting here in my hospital bed just plucking away. I felt like Woody Guthrie for a moment there. I wonder if he had his guitar in the hospital and how long into his illness he was able to play?

I learned yesterday that I’m referred to as being “pre-operative” in my record, so it seems clear that the likely plan is that I’ll eventually be undergoing brain surgery. It’s left me to ask, what is it that I would like to do when I am seizure free again? What are my hopes and goals? It feels like it would be good to write down what I am thinking about to give it some structure, some greater sense of reality, to give myself something to attain, and to hold myself accountable. What I’m writing here is simply what’s coming to my mind. It may grow and change, but it is what’s here now and asking to come to the light.

Here’s what’s come to the light for me, what I want when I am seizure free again. I want to regain my right and ability to drive again and with that right I want to travel home to see my family, maybe take a vacation, and just go visit different little fun sites, day trips to learn about where I live and just have some fun. I’m hoping that ability to drive might give me the opportunity to see my Dad again before he takes his final journey. He’s 92, and a strong man. It’s hard to say when that journey might be, tomorrow or a few years from now. I’d like to do foster care again. I want to build my writing. I’m still unsure of what that might look like, what is my story to tell and where should I be telling that story? I’ve even wondered if I should be taking all of this stuff and creating a book to tell the epilepsy story. There really doesn’t seem to be a lot out there and there are a lot of people struggling. I’ve also thought about children’s books and works on racism and community organizing too or maybe just continuing to grow my blog. In any case I have a duty to keep telling stories someplace, somehow. I want to find my home or maybe it’s make my home. I’m not happy with my work at UMM. I love my students and our community partners, but the hierarchy and atmosphere of mistrust and political game playing is painful. Still, I don’t know if going somewhere else changes that. Maybe the answers are internal as much as they are external. I just know that I want to keep searching and find that contentedness and connectedness with my community wherever that might be again so that I might thrive. I want to act again and to keep playing music and enjoying my fun with the arts. I want to just simply enjoy life, build new connections, celebrate the ongoing connections, and be thankful for all the goodness in my world. That’s what I want. That’s why I want to move forward with brain surgery or whatever course of action that the Mayo staff and I agree on. I want my life back 100%. There’s a lot out there to celebrate and to learn.

I wish you all well on your journeys.


It’s day two in the Epilepsy Monitoring Unit. My seizure medication was dropped last night from 250 to 100 mg and I was put on sleep deprivation. I went to bed about 3 am and woke up again around 6:30 am. Still, as far as I know, I’ve not had any seizures unless some brief twitches were actually seizures. If they were they lasted only a second or two.

So, here I sit. I’ve got 32 electrodes in my head which is all wrapped in gauze because of my thick hair which makes it more difficult to glue the wires in place. I’ve got a IV in my left hand though it’s not connected to anything. It’s just there in case they need to put in any emergency meds. I’m getting blood drawn daily for research. I get my vitals checked a few times a day and got my first shot of blood thinner this morning just to make sure I don’t get any blood clots while I’m here.

But, here I am watching movies, writing, reading, coloring. Last night I spent several hours untangling an old unfinished crochet project so that I might use the yarn again for a blanket I’m working on. I’ve watched 3 movies (or at least parts of them), all of which I’d seen before, one documentary, and a couple of TV reruns. It’s really kind of amazing how sexist and hetero-sexist the Andy Griffith show was. We all just thought it was sweet and innocent.

It’s not a bad way to spend a couple days. I’m not bored yet though I suspect that my settle in at some point if my seizures don’t come and take over my mind. That’s the challenge or at least one of the challenges. Most of life is hoping there won’t be a seizure or just living in denial of the possibility of seizures. It’s a strange challenge to sit and wait and hope that one will happen, and not just to hope for any seizure but to hope for 2 or 3 that are long enough and powerful enough to give the doctors the information that they need. Seizures aren’t a pleasant thing. Waiting and hoping for a seizure is like saying to a boxer “Hit me! Hit me please! Hit me again!”

Then the other waiting. At some point today, probably yet this morning one of the doctors will stop in again to update me on our progress. I’ve been told that it’s likely that I have seizures that I’m not aware of. Given that my meds have been lowered and I’m short on sleep I am wondering if I have had seizures that I don’t know about. It’s another strange thing to have pieces of your life, even if they are just seconds or minutes that you weren’t there for. What do I do with that time that I never had? I just don’t know.

So, here I am waiting to be punched by the power seizure and to find out if pieces of my life have disappeared. It’s a strange place to be. Meanwhile, I am also getting sleepy again and questioning whether I might find success in a nap.

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.

The Next Step

I made it through the detox. It may have helped that I think I had a seizure last week. It left me exhausted and without any appetite. That made it much easier to limit what I was eating. For several days I had nothing but berries with coconut milk and maple syrup for some meals and black beans and cauliflower rice for others. By the end of a ten day detox I’d lost about nine pounds. It wasn’t what I wanted to do. It’s okay that I lost the weight, but it was a lot faster and harder on my body than I wanted. I was tempted to stop and not do the AIP, but it seems a waste to not at least give it a try. So, the plan at this point is to move forward with the AIP for the upcoming month to see what happens.

I’m not going to be too strict. I’m focusing on the big picture pieces; keeping out dairy, eggs, grains, nightshades, etc. I’m not going to put energy limiting my fruits. The goal is just to give my gut a break. I am hoping that I’ll rebuild my vegetable habits. I am hoping that rebuilding my vegetable consumption habits and giving my gut a break will help me get back to feeling healthy.

Over the next month I hope to pay attention to my body and just see what happens to me.