Another New Year and Greetings From the Mayo Clinic

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

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

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

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.

The Break

I admit it. I didn’t make the full month. I actually broke down on Wednesday and went out for pizza. Then Wednesday night I had a seizure. I had another Thursday morning. So Thursday I pretty much slept all day and Friday I went for pizza again because of a lack of energy and just a feeling I should get some food in my system since I didn’t really eat at all on Thanksgiving.

I’m still feeling beat. I hope I’ll have my energy back by the time I have to go back to work on Monday. I think I did well taking a break from eating out and I may go back to it after the weekend. We’ll see. The real weight loss came with the seizure though. I lost 5 lbs by not eating for a day and a half. I’d rather not lose weight that way, but it seems to be life right now.

Still Eating Well

Yesterday was stressful. The day started really well. I found a freshly laundered $20 in the pocket of my pants and I was able to walk to work without my ankle brace for the first time. I had a nice morning meditation and all felt good. In the afternoon though, I got a phone call. I had expected it, but still it made me anxious. The call was from the Mayo Clinic. I’d emailed them over the weekend to see about setting an appointment. They called to set that appointment.

Living with epilepsy is a strange thing. I will go for months without a seizure. Life seems completely normal, except that I don’t know when the next seizure is coming. It’s never far from my mind. After a disappointing visit with a new neurologist last week in which I felt treated with disrespect and no consideration of my experience with my own health, I decided I needed to do something else. I took the leap to schedule a trip to Mayo.

It is both exciting and terrifying to think about going to one of the best medical facilities in the world. Normally, this type of emotional intensity would send me out to eat. After all, I deserve it right? I deserve some sort of comfort or celebration or whatever for setting this appointment.

This time I decided I deserved better, homemade comfort food. It probably wasn’t the healthiest, but it was tasty– scrambled eggs with vegetables, bacon, and cheese. Then went off for a small and super fun yoga class. It was just me and a friend who was leading the session. There were lots of laughs. It was good.

Today had some temptations, but nothing huge. I am wondering about tomorrow though. Wednesdays are often a day for eating out for me.

The First Day

Sundays are a day for me to go to Pizza Ranch. It’s a thing in our little town. A lot of people seem to go there for the buffet after church. I skip the church part, but the buffet has often been part of my Sunday. I am proud to say that this Sunday held no buffet for me.

After a breakfast of berries with yogurt and a little chia seed pudding (and I will admit to some sugar free chocolate chips mixed in), I went to the gym. I’ve just started going back. Today was my first day doing leg weights. The weight was really low, but given that I am healing from a broken ankle just two months ago, I am feeling really good about what I was able to do.

It was a nice day so I took advantage of it and after the gym, instead of going to Pizza Ranch, I took my dog Buddy for a long walk that included some off leash time out in the Pomme de Terre Park. We both loved it.

I don’t know that lunch was totally healthy, but it was a lot healthier than a pop and multiple slices of pizza. I made myself buttered noodles with asparagus and tomatoes and had a little cottage cheese while I was waiting for it to cook. Later in the afternoon I had some fresh pumpkin/ apple bake with a bit of yogurt and berries (and I’ll admit to more sugar free chocolate chips).

The afternoon held a little nap and then working on various projects. I realized something. I realized that my energy is coming back after being really low when my ankle broke. Two months ago I was sleeping all day and night. More recently I was waking up multiple times during the night, but not doing a lot during the day or accomplishing my household tasks. Then I started meditating again and using frankincense in hopes of getting my sleep back and avoiding seizures. Well, I am just waking up once or twice a night now and my house is getting back in order. I’m not sure what, but something is working. My dreams have changed too. They’ve gone from nightmares to strange and entertaining.

Dinner was unusual. I bought tofu yesterday on a whim. I’ve not bought tofu in years. Tonight I threw together the tofu with an array of veggies– broccoli, onion, tomato, garlic, and okra, with a bit of miso, coconut oil, and cayenne pepper and baked it up for about 45 minutes. It was surprisingly good. That’s good because I made enough to have leftovers for a few days.

I snacked tonight on a bit more of the pumpkin/apple bake with berries, yogurt, and chia pudding with more of those sugar free chips. I think the next step may be getting rid of the chips. I can’t imagine they’re at all healthy, but they do taste good.

It was a healthy day and I feel good about it. I hope you all had a good day on your wellness journey as well.