Seizure EEG

So I had my EEG this week. I don't recommend them. The flashing light and hyperventilation were a lot more taxing than I had anticipated. It left me exhausted for about 24hrs. But when you stop and think about how much energy goes into forcing yourself to hyperventilate for three minutes... Well... I shouldn't have been surprised. 

Collage and pictures courtesy of my mom/driver/personal assistant/fairy Godmother

I'm constantly shocked by my lack of stamina. Even this many long years after my diagnosis. I think that could be some kind of body dysmorphia. I see myself as far far far more capable than I am. Always. In any situation. "Sure I can lift that couch by myself. Absolutely I can walk a mile over rough terrain. You bet I can swim across that canal. I'm invincible!" Or maybe I'm just hugely optimistic? We'll call it that and not pathologize.  

However, I digress.

I did the EEG and the report came back normal. My husband joked that "Nothing about you is normal." But I have paperwork saying that my little brain is. YAY!

A normal EEG doesn't rule out Silent Seizures. Bummer.

Now I'm going to just hold off on taking anything for seizures until I talk to Dr. Williams, my muscular neurologist at the end of this month.

One invasive medical appointment done. Nothing else till Botox for migraines hopefully resumes next month. IF my insurance approved it. 

"I Don't Do ENOUGH!"

I tell myself lies.

I've always been a very busy person. Handy with my house, working, making money, enjoying others and volunteering in my community. Not to mention supporting family and friends. All of that changed dramatically when I became ill. It's something I still struggle with. That feeling of "I don't do enough." Or "I can still do that." Both lies I tell myself.

Thank goodness both my mother and my husband disagree with that statement. In fact they remind me to pull back when I need to. Which is often.

Right now we're having our bathroom remodeled and it has killed me not to do any of it myself. I did it in the past and I remember myself being very physical. But that isn't my truth right now. Now I need to conserve my energy. Now if I did something like paint a door I would be in incredible pain for days. In fact the very last time I painted in 2017 I was in incredibly pain. Looking back I think that was the very start of my issues.

My mom helps with my dogs ALL the time.

I remember being a bit dizzy on the ladder and my hands cramping so bad. Neither had happened before. At the time, both my husband and myself chalked it up to "getting older." I don't think that was the issue.

Now I don't work in an office and I don't volunteer in my community. Most days I feel like all I can do is prepare food, keep myself clean and do some small chores around the house. Some days I feel ok, other days I feel awful. I never, ever feel "good." Just levels of bad. 

So the lie that I tell myself that I "Don't do enough" couldn't be more wrong. I push myself every single day. I could very easily just not get out of bed. But I have relationships, help friends, get out in my community, walk my dogs (when I can) and try to take care of myself and those I love. 

I'm doing plenty.

Getting my eyes checked the other day.

Medical appointments keep me pretty busy.

Finding Stillness

Spring is such an absolute flurry of noise, color and action. Nature tells us it's the time to "GO GO GO!" This week however I find myself yearning for some stillness. I've been sleeping even more than usual. I didn't get up till almost 11 this morning, even though I slept great. I feel like a groggy bear just out of hibernation now forced to fish and be active.

My mom and I have been trying to swim daily rather than three times a week. We made it five days last week. The most by far that I've swam. It felt good for my body. I felt proud emotionally. I also felt pretty exhausted energy wise. I figured out each time I swim takes around three hours. About an hour to get ready (suit on, sunblock on, pack bag...), then we swim for a full hour. Then an hour to shower, lotion, freshen up... So about three hours total. It also makes me very hungry.

Maybe that's why I didn't lose any weight at all the entire month of May? June is later this week, so I'll try and try again. But back to my energy.

After such a busy week and pushing myself to walk as much as I can I think I just shut down a little. My Botox was delayed again and my face has been hurting. Especially where my craniotomy plates are. I'm hoping to get in to see my neurologist soon. The Botox is a must have. So that could also be part of why I feel so slow this week.

I also feel a bit empty spiritually, which I don't like. I looked up at the moon last night and I couldn't remember the last time I did so. I used to track the moon cycles and star gaze frequently. Somehow I fell out of the habit. I'd like to make more space in my life for my spirituality. 

It can be difficult to find stillness in the noise of a full life. It takes intention. Giving myself a pause. Or a huge sleep. Just following the flow of what I need.

I'm a pretty big deal

My strength is gaining and I'm feeling good about gently pushing myself. I feel a bit stronger every day. Today was the biggest push yet. I used a shopping cart when we went to Trader Joe's.

I picked this store because it's very small, the parking is very close to the door, I know it well and if I couldn't do it they have electric carts right outside the door, so I wouldn't even have to bring my chair. 

As you can see I did do it! My entire shopping list. I felt like such a freaking bad ass!

I felt like my organs were shifting down as I walked. It occurred to be that sitting in a chair does squash everything down, so I'm sure that they are needing to re-adjust. What a weird thought. 

Towards the end I was starting to sweat a little bit and feel fatigued. My muscles still felt strong, but I felt tired.

We guessed that I shopped for at least 30minutes. I'm so impressed and proud. It felt like a good stretch of my physical abilities. 

Feeling Stronger

Back in November I thought I was going to be using my chair 100% of the time by now. Instead I feel like I'm getting stronger. I talked about pushing myself last month. I pushed through a pain threshold that I didn't think I could stand. This showed me that maybe I'm capable of doing more than I thought I could do. Then I started trying to do more physically then I thought that I could.

I'm still doing that. Swimming, gardening, house work and pushing. I'm listening to my body, but I'm pushing it too. Pushing hard like this is new for me. It's painful, but it's working. My strength and stamina are both building.

I explained the pain to my doctor like this. Most people acclimate to the pain of an activity the more they do it. Maybe it only hurts the first few times and then you adjust. For me it hurts every single time. The pain is there and it is constant. And I mean 24-7 pain that would likely put most people in bed. I just push through it.

I tell my husband that if I'm going to be in pain anyway I'd rather be moving and doing things in pain and having the distraction than laying around in pain with nothing but the pain to think about. Even if it causes me more pain to be physical, it's worth it to be stronger.

Pushing to me doesn't mean inflicting something on myself that's impossible or where I'll get hurt. I use my support tools like my walker, back brace, cane, whatever I need. Then I just see if I can do it (whatever I'm trying to do.) Just test the waters. If it feels ok I do more and more. If not then I stop.

Yesterday I was able to walk around our block with my walker. Something I haven't been able to do since last June. Today I took my walker to my medical appointment instead of my chair. I was comfortably able to do it and it felt amazing! I feel very proud that I'm finding my limits every day. Stretching myself to build muscle and do my best.

Pushing Myself Hard

Spring is here where I live and I have been a busy bee. My Mom's swimming pool is back open and we were the first ones in it again. It felt fantastic to be back in water. There's no other workout like it. From the first day back in the pool I decided I was going to push my muscles.

Still working out with water weights.

I felt like all winter I physically atrophied. I did the basics, but not really anything that pushed me physically. The only way I can keep what muscle I have (or hopefully build on it) is with pushing myself. I'm already in physical pain every day. There's nothing like fresh pain to make you forget your old pain. And boy do I have pain!

But I also think it's a kindove good, almost normal pain. Like the buff girl limping as she leaves the gym. It is also teaching me about my body. I'm much stronger than I think I am. Strength isn't my problem. Stamina is.

Getting the summer garden ready took a lot of strength!

I've also learned that my lower back is the first muscle group to feel the pain and to give out. My back brace is a big help, but it doesn't solve the underlying problem. I'm going to do some targeted exercises in the pool to see if that can help. 

I have my recent MRI to thank for this push. It was incredibly painful to endure laying still on the table. My right leg and back were screaming at me to stop. But I pushed through the entire process. I was able to go much further than I thought I could. To tolerated more pain then I thought. This got me thinking about the limits I place on myself and my body with my mind and my fear of pain.

Now to be clear, I'm not going into Rhabdomyolysis or running miles around the block. I'm cleaning, gardening, moving small things around, re-potting plants (that are heavy for me.) Pushing myself in all these areas of what I usually do. I've been cooking dinner at night as well. These are all tiny things to most people, but each activity leaves me drenched in sweat. Seriously. I can't remember the last time I sweat this much and for so many days in a row. I do not enjoy that part, but I do like feeling stronger.

I masked out where our new TV is going.
This was a ton of work!

Pretending to Be Normal

There are times where I just get so sick of my body and my illness that I have what I call a "normal burst." That's where I just pretend that I'm a normal, healthy person who can do anything they want. I resent my medications. I resent using mobility tools. And I hate that my body fatigues. So I just push and push and push till I completely gas out.

Today was a day like that. 

I had a lovely morning with my Mom and when I kissed her goodbye for the afternoon she said "Now go and rest." We had swam that morning (Well, I more stretched and floated) and that was good advice she gave me... But something in me said "NOPE! I'm going to GARDEN because I AM NORMAL!!!" It's like my inner brat breaks loose or something?!

So I did. 

I watered my garden and did some pruning and cleaning. I felt my body want to quit, but I pushed it. I pushed it when I knew I should just stop. 

Why? 

Because it felt so good to be out there doing exactly what I wanted to do for a change instead of what my body wanted me to do (which was what my Mama told me to do... go and rest.)

I often fantasize about the things my body used to be able to do. Snorkel, bike ride, hike, etc. I think that's super normal and I'm sure many disabled people do the same. Especially considering I haven't been disabled that long. It was just 19 months ago that I was snorkeling in Hawaii with my husband and work friends. No way could I do this today.

Sometimes pushing myself is worth it. 

I try not to push so hard that my muscles go into rhabdomyolysis. It has happened a few times in the past and I like to think I learned. Pushing myself helps me know my limits. If I don't go to that breaking point I won't know where it is. It also gives me a little taste of what it was a like to be my "normal" old self again.

I can't tell!!!

One of the hardest things for me about having a chronic, progressive condition is the lack of stability and predictability. I honestly can't tell what I'll be able to do from one day to the next. I know I'm far from alone with that feeling of instability. But that's no consolation.

Sometimes I feel like I honestly can't walk at all. Sometimes I feel ok to garden for an hour (though I always pay for it later). Sometimes I think it's only a matter of time before I'm hooked up to a ventilator. Other times I feel my body has really stabilized. The constant uncertainty is stressful and hard on not just me. 

My family can only go by what they see and what I tell them. Of course I don't give them a constant play by play of my body. "Now I have a cramp in my left calf, now my lower back is spasming, now my right eye is twitching..." They aren't me so they can't possibly know. Or as much as they try, understand. It's terrifying. I feel a constant undercurrent of panic no matter how mindful I try to be. "Is this the last day I can walk? Is this the last time I'll be able to do this?" These are things I think about daily. 

If even I can't tell what's going on in my body from one day to the next how could my family? If I don't know what I need or what's helpful, how could they? I do know that it helps me to talk and share the important things going on with me. Including my fears.

I'm very lucky in that when I share with my family, they take it seriously. I still remember talking to my husband about needing a rollator. It was a very hard conversation, but needed. I ALWAYS feel heard, respected and helped by my entire family. Which when I can't tell what's going on with my body is just what I need. 

I've learned what doesn't work for me is pushing myself too hard just in case I won't be able to do something in the future. It's what I have a tendency to do and my body doesn't thank me for it. I need to take it slow and cross each bridge as I come to them.

I Keep Trying!

Throughout my multiple challenges and conditions I've (almost) always remained hopeful. I'm hopeful that whatever newest, latest thing I'm trying will help ease at least some of my symptoms. Sometimes it does, most of the time it doesn't. Here's some of the million things I've tried, why I tried it and what the outcome was.

Keeping Hope Alive

• CoQ10 1,500mg Daily - This was the first thing I ever took that helped with my muscle myopathy. I've done a lot of tweaking to find the right dose that helped my fatigue and strength. This is the sweet spot for me. I take one 300mg pill 5 times a day through the whole day. It did take about 3 months to notice any difference.
• L-Arginine 500mg - Part of the "mito cocktail" along with CoQ10, this is commonly recommended for people with Mitochondrial Myopathy. At first this didn't do a thing for me. But a year later I tried it again and WHAM! It really helps with my dizziness and fatigue. I take it once in the morning. More than that gave me insomnia. I noticed the helpful effects immediately when I began taking it again a month ago.
• Carnitine - We called it "carnitor" in our house as a joke. It didn't help and it upset my stomach, but it can help others with a mito disease. 
• L-Citrulline 750mg - Something new I'm trying. I read in a scientific study that it was more effective than Arginine for some people with myopathy. I'm not noticing a difference yet but I'll try the whole big bottle.

• PT - Physical therapy did squat for me. In fact it was harmful and pushed me too hard. I tried it for joint and muscle pain and to try and increase my range of motion. What DID help instead was doing gentle stretching on my own, especially in the morning when I wake up.
• SLP - Speech therapy was helpful, but my symptoms had improved a bit from the Arginine by the time I got in. I have a Barium Swallow Test coming up in February and depending on those results I may go back. She also gave me some cognitive exercises to do that I found useful.
• Magnesium - I find it useful for stiff, painful muscles. I take it daily and if really bad I try and take an Epsom Salt Bath. 
• Ibuprophen 800mg - Prescribed for inflammation I get little to no relief from it so I don't take it.
• Acetaminophen 500mg - I take 2 (1,000 mg) if my muscle and joint pain gets too bad. This is very effective for me. For night pain I take Acetaminophen PM about once a month. 

• Pushing my muscles with a lot of activity - Didn't help. Did hurt. Can cause the serious medical condition called Rhabdomyolysis (and yes, I've given myself this from pushing too hard). I tried it to see if I could "push through the weakness" because I read that works for some people. Not for me though! 
• Not getting enough activity - Resting to much from fear of muscle destruction just caused an increase in my cramps and spasms (not to mention weight).
• Baclofen - This has been a life saver and greatly reduced my cramps and spasms. It's a muscle relaxer that I found on my own by doing research. It's commonly given to people with MS. Luckily my doctor agreed to let me try it. It hugely improved my quality of life!
• Lyrica - I used to wake up crying from pain at night caused by my peripheral neuropathy. I thought my only hope was Gabapentin (which DID NOT WORK and I had a bad reaction to). Then my doctor tried me on Lyrica and POOF! My neuropathic pain was gone.
• Cymbalta - I've been on this for over a year for muscle and joint pain. A side benefit is it also helps with depression. I call that a win-win-win. I did have to adjust to it. It made me very foggy headed at first. But I'm very glad I "toughed it out". My pain is unbearable without it, just like with the Lyrica. 

• Plaqenil - I was given this for rheumatoid arthritis symptoms (that I now suspect might just have been the mito myopathy in disguise). It's an autoimmune suppressor that may or may not have been one of the contributing factors of my muscle weakness suddenly coming on so severely. Needless to say, it didn't work for me. 
• Naps - It always feels like a battery recharge. My cognitive functioning and muscles typically both improve with rest. I try and get a nap in every day. 
• Blue Light Blocking Glasses - Recommended by both my new neurologist and ENT for migraines (which I shockingly, apparently have). You can get them cheap online and they have made a big difference. They reduce my headache intensity and frequency and reduce my dizziness. 
• Hepa Air Filters - I credit these to my overall pretty good health while working. I would be in a small room with a lot of people who sometimes were sick. I usually would catch things at home and not at work. Now I have one at home too!

My current plan is to see if the Migrelief was helpful or not. I try and test things when I run out of them. I've also only been taking the L-Citrulline for a few weeks now so I'm giving that a chance. No difference yet. I read last night about how BCAA (an amino acid compound) taken orally can help with muscle strength, endurance, pain and recovery. I ordered this one not mixed with other crap to try in a morning smoothie in a few weeks. 

On this journey I have learned that I have to be the expert in my health. I know my symptoms better than anyone. I also need to clearly communicate with my health team about what I need and how they can help me. I need to trust myself, but also my doctors. If something helps I keep it. If it doesn't I move on to the next thing. I haven't run out of stuff to try yet and I don't think I will anytime soon. Though swimming with dolphins is something I'd definitely skip. 

I am not affiliated with any product linked, nor did I receive any kick back for endorsement.

Plan Kick Ass Progress

I'm starting week three of "Plan Kick Ass" now and I'm seeing improvement. I'm much stronger that I was before and my joints and muscles hurt less. I attribute that to pushing myself physically. I've been walking my dog, not using my wheelchair at work, taking short walks at work, stretching daily and doing chores like gardening and cleaning. Things I haven't done in almost two years!

My eating is going well. I notice that the healthier I eat the worse I feel when I eat something not the best (like gluten free mac n' cheese.) If I stick to whole foods I do well. Now I'm going to focus more on portion size.

We're in the thick of tomato and pepper season where I live and they're delicious! I'll be sad to see them go soon.

My stamina is the same and I still feel the need to nap daily. I am slowly decreasing my Cymbalta and that seems to be changing my sleep. I'm now down from 60mg to 30mg and my mood is still really doing great. I attribute that to the increase in exercise and the sense of accomplishment I feel getting more done and taking charge of my body.

My weight is still an issue for me and something I'd like to work on. Though I feel I'm heading in the right direction. 

And of course... here's your gratuitous puppy picture!

Plan Kick Ass Week 1

Plan KA Days 2&3

Plan Kick Ass is going really well. Today I condensed my plan to these 10 steps and put them on my chalkboard in my room as a reminder:

I've been enjoying a simple egg, gluten free toast, herb goat cheese (with fresh herbs) and tomato for breakfast. This morning I had it with two eggs on the side.

Free range, organic, humane, pasture eggs in a tiny bit of avocado oil.

Delicious!

I made it into a breakfast sandwich yesterday with some lavender sea salt on top.

This morning's variation.

We had friends over last night and put out a healthy spread. I indulged in two Ginger Ales (but no booze) and about two tablespoons of "pub cheese" (that I did not buy, but have a hard time saying no to!) Oh yeah, and I put some brown sugar on my strawberries. Other than that it was all very healthy and actually Vegan. It was also my dinner. 

Guest spread

Also a guest appearance by my Sweetie!

So the food choices are going really well. We went to the movies with a friend today and I said "GET THEE BACK SATAN" to movie popcorn and soda. Just had my water and a few raw almonds. Go me! After we went to Chipotle for lunch where I had a salad with pinto beans, grilled veg and corn salsa. No soda and a few chips. No meat, no cheese. No queso dip. GO ME!!!!

You GO GIRL!

I've been pushing myself to walk a lot more. The stretching feels really good in the morning and my husband has been giving me amazing rubs that are also very helpful for my muscles. I'm trying to push myself, but also listen to my body (Rules 1 and 2.)

Tomorrow I'm going to have a morning push and do some gardening. Then relax the rest of the day and get ready for my three day work week. Wish me luck!

Plan KA Day 1

As I said in my previous post, I am re-committing to PLAN KICK ASS to better my health. Here's how day one went down. In the words of my husband "You crushed it!"

My lunch was high good fats and high protein. Three scrambled eggs with mushrooms, onion and peppers all served up like an open face omelet. No gluten free bread and no cheese. It was delicious and kept me feeling full fo a very long time.

Dinner was very veg heavy. My amazing husband planned, bought and made these beautiful sweet stuffed peppers. I made the brown rice and salad with tomatoes and cucumbers.

I don't have the spoons to make my own salad dressing, but this is the BEST Italian vinaigrette I've found. 

Every morning I still indulge in my wonderful cup of Java. I'm not ready to give that up yet, but I am trying to make that my only sugar for the day. I'm also cutting out cheese except for Goat because it's very low in calories, high in protein, full of good fat and Goats are treated better in my country than dairy cows. So that's just a win all around. My husband minces fresh herbs in it and OH MY! It's amazing.

My snacks have been fresh fruit and these bulk bin beauties. Raw almonds.

We were eating a name brand's "Smokehouse" almonds until I looked at the ingredients. Ack! Always look at the ingredients.

As far as pushing myself physically went, I seriously took that to heart. I walked my puppy girl by myself around the block (a really big deal for me), did about 3 loads of dishes, 5 or so loads of laundry, scrubbed out shower/tub, cleaned the bathroom and tidied up. I laid down for a bit, but honestly felt too full of energy to sleep! 

My body did really well till around 6PM. Then my muscles went into revolt. Cramps and soreness kicked up, but I expected it.

I like Friday to be my "big push" day because then I have the weekend to pull back a little bit.

So far, I'm really glad I made this change. My husband is 100% on board and being really supportive and amazing. GO PLAN KICK ASS!!!