Category: epilepsy

Detox: The Halfway Point

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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

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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

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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

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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

Let the Detox Begin

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One of the realities of living in the world today is that our bodies are filled with toxins from before the time we are born. The air we breathe is polluted. The water we drink is polluted. Much of the food we eat is treated with chemicals or maybe isn’t really food at all, but simply a mix of chemicals politely called “processed food.”

There are benefits and there are downsides to this reality. We grow a lot more food then we’ve ever been able to in the past, but it’s generally less nutritious, or at least that’s true of the conventionally grown foods. We have tons more stuff than we’ve ever had before, but I’m not sure that we have as much, much less more happiness. We’ve also got a lot more medicines and health care tools to keep us going. Sometimes that’s great. Sometimes the medicines can add to the disease. That’s what brought me here today.

As many of my readers know, I was diagnosed with epilepsy. I think it’s about seven years ago now. Generally, it’s not a huge part of my life. It’s largely controlled by medication and I go about my day to day like anyone else. Over the past year or two though I had a couple small seizures which I suspect were caused, at least in part, by a stressful job situation. In any case, my doctor and I decided to try some changes to my medications. The changes didn’t work.

I had an allergic reaction which became something known as DRESS Syndrome (Drug rash with eosinophilia and systemic symptoms). I can be thankful to say that with a great team of physicians from the Mayo Clinic, mine was caught early and no major damage was done. Still, now and for the foreseeable future, the added toxins in my system mean periodic flares with exhaustion, weakness, rashes, and other symptoms.

So, instead of getting beaten down by this new challenge, I am trying to find the opportunity to learn and to renew. Yesterday, I sat down with my integrative medicine practitioner, Dr. Kelly Felmer, and we agreed on a plan. Over the next ten days I’ll be embarking on a detox diet; no dairy, meat, grains, artificial colors or flavors, and following a strict set of guidelines on what I can eat focusing on lots of healthy fruits and veggies. This morning is starting with a nice smoothie made with blueberries, raspberries, and blackberries, carrots, and spinach. After the ten days of detox I’ll start on the autoimmune protocol, another clearly defined diet to help me heal my gut, get rid of toxins, and determine what foods might causing me harm. That will take at least a few months probably longer.

It’s a journey, but one that I get to define and one that, I hope, will get to the root of the health challenges that I’ve faced and make my overall physical, spiritual, and emotional wellbeing better for the long run. My plan is to share that journey here. I hope that you will come along.

Another New Year and Greetings From the Mayo Clinic

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Well, a year has gone by and here I sit at the St. Mary’s Hospital campus of the Mayo Clinic reflecting on my goals of the past year and redefining my goals for next year. Here are last year’s goals.

  1. Writing at least 50 blog posts (here’s the 1st one!)
  2. Reading/ listening to 50 books ( I’m starting with “The Education of Will” by Patricia McConnell and “38 Nooses” by Scott W. Berg)
  3. Getting back on track with my healthy eating habits
  4. Running a 10k or 1/2 marathon (I haven’t decided yet, but I know more than 5k and probably not a full)
  5. learn to play guitar
  6. finish at least 3 or 4 knitting projects
  7. Get Buddy started with his therapy dog training
  8. Cutting my screen time significantly, especially facebook time

I met a few of them. I wrote more than 50 blog posts. I did okay with eating healthy most of the year. I went quite a while without lousy pizza and I did some time increasing my fruits and veggies too. I still need some work there, but I count that goal as met. I did finish a few small knitting and crochet projects, baby hats and blankets. I still need to send them off to charities though.

I learned some and had a few setbacks too. I’ve learned that sometimes seizures make it hard to focus on reading and I’ve been reminded that I like returning to the same old books over and over again. I forget stuff or maybe find new things in a second reading and some books are just simply comforting. I didn’t come close on that goal. I wasn’t on track, quite literally, for my running goal and then I blew it completely breaking my ankle in September. I’d like to return though, maybe just to a short race. Buddy still needs to get his good canine before he can do therapy dog training. Both are tough to find in Morris and right now I can’t drive to get training elsewhere. Screen time is still an issue that needs work. I set down the guitar in probably February again, apparently I need inspiration or maybe just a guide.

For this year, I think I want to simplify things just a little and name a few less goals. Maybe some of the others that didn’t happen last year will happen this year, but this is what I want to focus on.

  1. Getting my seizures to stop
  2. Getting to my goal weight
  3. Reading at least 12 books
  4. Cutting my screen time

That’s it. Let’s keep it simple and see where it goes. I wish all those reading this the best in the new year and good luck with your resolutions.

The Mayo Experience

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It’s been two days now at Mayo. Yesterday, I was at the clinic where I met with doctors, had an MRI, and got blood tests. I have decided I am not a fan of MRI machines, though I did make it through. I am happy to say that I didn’t sneeze while in it too. It was definitely a possibility as I have been hit with a head cold for this visit. I could just imagine sneezing and getting snot all over the inside of the machine and spraying into my face.

It was a tiring day. I was supposed to have a sleep deprived EEG in the afternoon so I’d only slept four hours the night before and those weren’t the most restful. So, I wasn’t at my best. But, it may have helped get me to today. Instead of the EEG yesterday the doctors scheduled me to have a multi-day EEG and video monitoring at the St. Mary’s Hospital.

I walked here early this morning. I tried to get the shuttle, but I wasn’t sure I had called it correctly, so it seemed better to just walk the couple blocks from Neuro Hospitality House. I am glad that I did. It’s good for me to walk and be outside, healthy for the spirit. I got signed in at 7:30 and by about 9 or 9:30 I was all hooked up. Within an hour or two I had a seizure just under a minute. It left me pretty confused. The techs came in immediately and were asking me questions. I couldn’t remember the name of the state where I live, Minnesota. I knew it was near Wisconsin and that it started with an M, but it took a while for me to say it. I couldn’t remember Rochester at all.

I’ve been twitching more throughout the day and pretty tired, but I don’t think I’ve had any more seizures yet. It’s been a relaxing day, just sitting and watching movies and napping. I tried reading right around the time of my seizure, but I couldn’t do it.

Staying in the hospital is weird. It brings back memories. I spent a lot of time in hospitals when I was a kid. My mom had cancer. She was diagnosed when I was six and died when I was twelve. She did a pretty amazing job being a mom from her bed. I celebrated my birthday by her bedside. I think it was my 12th. I still feel her with me as I am taking my turn laying in bed. It still feels like she’s here in my heart and taking care of me, assuring me that it will be okay.

We’ll see where things go from here. I am hoping for more of an update tomorrow.

Coming to the Mayo Clinic

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I have officially begun the new adventure. I am in Rochester, Minnesota at the Neuro Hospitality House. My first appointment at the Mayo Clinic will begin in just three and a half hours. I am really excited about this.

I’d say this step of the adventure really began yesterday morning. I’d spent the night in Sheboygan, Wisconsin finishing out my week with family with my last night sleeping on the couch at my sister Jean’s house. A bit after 6am, she and her husband Bob took me to the bus stop for my ride to Rochester. The bus never showed up. Thank goodness for caring family with flexible schedules! They changed up their day and drove me to Rochester, over four hours away. Arriving here I met the crew of patients currently staying at the House, a man with a fused spine and his wife and a woman who came here expecting spinal surgery and instead got a diagnosis of ALS. Later in the evening another gentleman with ALS who is hoping to be a part of some stem cell research happening at Mayo joined our crew. We now represent four states and include the east and west coasts as well as the Midwest.

Just in my short experience thus far I would recommend staying at places like the Neuro Hospitality House to anyone facing these types of medical experiences. Not only are they cheaper than staying at a hotel, but they are kind of homey and it is a really helpful thing to talk about stuff like perspectives on life with others who’ve had theirs changed by what they’ve been dealt.

This morning I am both excited for my appointment, wondering what this experience might bring, and simply tired. I have a sleep deprived EEG this afternoon so I was only allowed four hours of sleep last night. This is in hopes of generating seizures that they can catch and record. I am hoping that I don’t have one until this afternoon when I am hooked to that machine. Before then I have evaluations and other tests, and most fun, I will likely get a chance to have lunch with my old college housemate Julie who I haven’t seen in over twenty years. It should be a good day. Stay tuned for more updates!

Preparing for a New Beginning

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So, I didn’t make my goal of a full month without eating out. I suppose I could have if I’d pushed myself even just a little bit to not go for any of those comfort foods. But, I didn’t and honestly I don’t feel too badly about it. I have bigger things on my mind.

A few weeks back I went to see a new neurologist in Wilmar. He was awful. While some of the staff were nice, others seemed to really be unhappy about being at work and treated patients like a bother they had to deal with. I felt really disrespected and not listened to. He prescribed a new medication and told me to come back in January. I thought about it further after I left and decided it was the wrong choice. But, I had to do something. I couldn’t just quit taking my medication, though I had lowered the dose, and I had to see some neurologist somewhere. So, I took advantage of having good insurance and I took the big leap. I called the Mayo Clinic in Rochester. I was surprised to get an appointment pretty quickly. I’m going in at the end of the month.

I’ve had at least three tonic-clonic seizures since August. That’s a lot for me. I usually have a couple months between seizures. I’ve been jerking a lot in recent weeks too. I can’t handle the same level of medications that I used too. I’m trying to, but find I can’t focus, don’t remember things, am just grumpy, and have a dull headache.

I am looking forward to going to Mayo. I know I don’t have a lot of options. I’ve taken 4 different medications now which means a new medication isn’t likely to work. Mayo is known though for being on the forefront of epilepsy research. They are the best in the world, leading the way in surgery, new medicines, and other treatments.

I am finding myself both hoping and fearing the possibility of having a chance at surgery. It feels like it could be a new beginning. I still have a few weeks to wait and don’t know what to do besides just continuing to think about it because I don’t seem to have any other choice, and continuing to write my list of hopes and goals and questions, and being open to ideas.