A Snapshot in Time

 April 4th, 2018 I started this blog. I knew something was wrong with me, but I had no idea what. In 2015 I tested positive for Tuberculosis. I was on the drug Plaquenil for 9 months. It was awful. I had a whole slew of side effects and took a year off of grad school mid-way through a two year program. I was a wreck. 

At the time it was the worst thing that happened to me physically. HAH! I just have to laugh looking back. It's like stubbing your toe and thinking that's the worst thing ever only later to have all your limbs cut off with a chainsaw.

I won't rehash my complete timeline, because I did a good job doing it here with pictures. But writing a book about my journey has been on my mind. Given that I was thinking pictures are more powerful than words sometimes. My opening could be this montage of my journey...

Success is the word for this year.

I graduated with my Masters in Counseling Psychology. But by the end of the year I'm experiencing some pretty major fatigue. I intuitively know something is wrong.

Fighter is my word for 2018. 

I got my Mitochondrial Myopathy diagnosis, along with brain surgery. I felt like I was just fighting everything coming at me this entire year. My mobility was a big struggle this year. It was all terrifying. I worked full time this whole year.

Surviving is the word that comes to mind for 2019. 

You know how they say "thrive, don't just survive." Well, I was surviving as best as I knew how. I left my dream job, no longer able to keep up mentally. I'm diagnosed with chronic migraines and setting into using a wheelchair any time I'm out.

Joy.

I know that sounds so strange given what happened to the world in 2020. But for me it was validating seeing everyone's lives change so dramatically like mine had. It also brought us much closer as a family. Our son was living with us and we made a lot of moments of happiness this year. 

Content.

In 2021 I felt like I was really settling into my new life. I built up my core medical team and started finally feeling my symptoms being more managed. I felt much less scared than I had in the past. 

Weary.

Although I have many blessings in my life, I remember just being completely wiped out this year. I would try to have company or go to someone's house only to have it leaving me totally drained. I'm so fatigued that I can't make even the most basic decisions.

Miraculous.

This year I learn about my processing issues of long-chain fatty acids. I drastically change my diet and am mobile again. I still have a lot of fatigue and some atrophy, but I'm able to do so many things I thought I never would again. Everything is exciting and new again.

Thriving.

I'm working on my fitness and physical health. I still struggle with my chronic migraines and fatigue, but I'm able to do so much more day by day.

Insanity. (In a good way.)

I change my diet even more. I'm focused on short-chain fatty acids, gluten free and vegetarian. I feel even better. I can go some days with no nap now and when I do nap it's for much shorter a period of time. My strength and stamina is finally up to pre-illness levels.

I'm so excited to see what the rest of this year and next year hold. I'm working on my food addiction, so hopefully I'll make some progress there soon.

52 and THRIVING!

These days I'm not just "surviving," I'm THRIVING!

I spent the last many years surviving. Going from one physical crisis to the next. I'm thrilled to report that I've been "crisis free" for about five weeks now. I'm also getting stronger every day. Here's what I'm doing that's working for me.

• I work out in some way daily. Dog walks, my trampoline (affectionately dubbed "Fatty Bounce Bounce" by my husband), my new gym, swimming with my mom, long walks every Saturday with my husband.
  
  
• Wearing my FitBit every day to track my sleep, heart rate, HRV and overall progress.
  
  
• Using Hungry Root for dinners during the week. We get about three meals a week with ingredients and the menu delivered right to our door every Monday morning.
  
  
• Eating strictly vegetarian and limiting my animal protein. A little cheese, yogurt and eggs.
  
  
• Watching my weight. So far I just watch it go up a little and down a little, but it's a work in progress.
  
  
• Resting when I feel tired.

That natural glow is from sunshine and exercise.

Since adopting these practices I'm feeling much more myself. My migraines remain an issue. A side effect from my craniotomy, I'm sure. But my mitochondrial disease feels to be in full remission right now.

With that comes a huge adjustment and also some fear. Fear that it could turn back on me just as suddenly as it went away. I'm on my guard, but also just loving life.

My husband and I walked just under three miles with our little dogs yesterday. I was exhausted, but felt so proud. It was the farthest I'd walked since I can remember. Just a month ago I struggled to walk a mile. I also carried one of our dogs or the other for at least half a mile. That's an extra 12lbs.

I told my husband I'd never poo poo another 12lb weight loss again.

This little guy is solid!

I still have severe dizziness, and "ice pick" migraines daily. I have been taking Qulipta 60 mg every night and it was working very well. Then it felt like I acclimated to it and it stopped being so effective. That seems to happen with me and medications.

My migraine neurologist is going to try me out on Lamictal 25mg instead to see if that helps. I feel like I might have tried it before, but I don't remember. It's an anti-seizure medication that should help with my type of migraines. 

In the meantime, I will try to keep up the good work and continue to re-build my body from being so ill for so long.

The Chronic Fatigue Sled

I've been in a tough spot the last few weeks both physically and mentally. I've been pushing myself really hard physically to try and have a "normal" life. Cleaning my house to have company over, entertaining my sister and baby nephew, cooking for them, cooking dinner every night, walking the dogs, playing with the dogs, feeding the dogs, holding the dogs, doing laundry, cleaning our bathroom, vacuuming, corresponding with friends and family. All of this has led to a series of crashes where I can't seem to sleep at night or get out of bed during the day.

I'm also trying out a new pain medication that could be giving me insomnia and more fatigue. I'm not sure since I always have both pretty consistently. 

Me on an Icelandic Glacier 11 years ago when I was healthy

This morning when I just couldn't get up, even though I was mentally excited to go swimming with my mom and spend the afternoon with her, I had a thought. The weight on my body dragging me into bed feels very physical to me. The way I push myself every day and how hard I push feels incredibly physical and mental. Beyond what healthy people experience.

I realized that I felt like one of those arctic sled dogs. Alone and hooked up to a sled weighed down with boulders. On a regular day I push and push through the snow trying to make progress on a steep mountain. So steep I can't even see the top of it. 

Then I just can't go on anymore and I collapse. Sliding back down the trail. Letting the sled pull me down.

When I've recovered enough I start pushing again. Running up the snow, pulling the sled. The weight of the sled may change depending on what's going on with my body. The only thing I know for sure is that I have this urge to keep pulling it up and that back sliding is un-avoidable. 

Days like today feel like that. Like the weight of the sled was just too much and it pulled me back into bed as time slid past me. Well into the late afternoon I was finally able to get up. I feel the pull of needing to accomplish things. Anything. And I push again.

I think what I need to learn to do is pull a little and rest. Pull a little and rest. I need to implement my vacation rules. No more than one big thing per day. 

And if there are days where I just stay in bed and rest... that's ok to.

Fears

I had my eyes checked at the end of August and bought a pair of expensive glasses. Then a few weeks ago I needed more contact lenses, but my current prescription was feeling a tad weak. I went back to my eye doctor and he re-checked me. Within four months my eyes had changed a little for the worse. But that's not all...

I feel like I don't see quite as well as I used to when I'm driving. Especially at night. Part of mitochondrial disease is having compromised eye sight. That scares me.

I don't take any minute for granted with my muscles. Knowing that I still have mitochondrial dysfunction makes me fear a relapse. That I'll suddenly not be able to walk or use my muscles anymore.

Taking joy in my pottery with my cute new glasses

I combat these fears with fitness. Working out makes me aware of my body and its limits. I enjoy it. I miss it when I don't do it. I especially love Yoga. Which is a big surprise. I love how aware I am of my body when I do it. It has also helped me the most with my strength and flexibility. Being able to lift my arms above my head is a thrilling accomplishment and I feel I have Yoga to thank for it.

When I exercise it verifies what my body can do. What I'm capable of. Not what might happen in the future. Today I am strong and can still see. Yay!

The first week of the rest of my life

The first day of the rest of my life. The first hour, minute, second. Right this moment is the only moment that will ever be. Knowing that makes it easier for me to make this moment count. Who do I want to be right now? My answer is someone strong, resilient, who learns from the past. Someone who knows what I want my future to look like. At least a little bit. A future I prefer… how’s that?

In my future I would like to be healthy. I would love to get to sell my wheelchair van and my wheelchairs. I would be giddy if I could have enough energy and strength to walk. So in the present moment I’m going to do everything I can to give that possible outcome a chance.

Since July 26^th I have been eating to set myself up for success. Tons of fruits, vegetables, whole grains and beans. A little feta and goat cheese here and there. Lean chicken breast and oat milk in my coffee. I’ve also cut down my portion sizes to what is supposed to be “single serving” or close to it.

I’m very happy to share that I’ve been feeling much more energetic. I woke up at 7:30AM this morning. Something unheard of before. And Friday not only was I able to be out all day, but I didn’t take an afternoon rest.

When I have been resting it has been much shorter too. Yesterday was only an hour.

I’m feeling a bit clearer headed. My physical stamina feels vastly improved. I’m doing  a lot more that’s physical during the day. I’m also still gently pushing myself.

I’m excited and hopeful each second that I’m able to feel good. My pain in general is less, I think due to swimming a minimum of three days a week.

I’m so happy to have had some potential answers and to have the strength to make these good choices for myself. No pizza on the planet tastes as good as walking feels.

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. 

ADA Progress!

I mentioned in a previous blog post how we are re-working our home to make it  more disabled friendly. The focus right now is on our living room. As it was before I could hardly even get out the door with my chair as we had a big couch right in the way. I'm thrilled to say that we've made some major progress.

Instead of a hulking entertainment center we now have a hulking TV (that no longer takes up the whole room.) It's pretty impressive and we've had a blast watching it the past few nights.

Getting rid of our giant entertainment center then allowed us to move the couch which opened up the room in a major way. I can now easily go down the hall and out the door (and vice versa).

Max approves of the new layout.

Our old couch is literally starting to fall apart, so we ordered this sofa sleeper. It should arrive later next month.

I am incredibly happy to have my house work better for me and my needs now.

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.

Symptom Update

Time is going by quickly and I'm beginning to learn a lot about my body. What it can do (more than I thought) and what it can't. Where I can push myself a little bit and where I really can't (like naps are a MUST!)

I've learned that if I'm getting sick in any way, my body just shuts down. I need to talk to my PCP about the whole "muscles don't want to work my lungs" thing and see if there's anything that can help with that. It's a horrible feeling. Fortunately it's usually only there if I'm sick or getting sick. 

I've also learned that working three days a week is way more doable than four. I was seriously pushing myself nowhere good working four. Every day I don't work I nap mid-way through. That also helps me in a massive way. I wake up refreshed with energy levels restored. 

To recap on medical progress (or lack of.) 
My neurologist has retired and I wasn't assigned a new one. That's fine with me as I feel that train has gone as far as it's going to go. Every specialist in my network seems to only work on days that I work and I can't take time off every week now that I'm down to a three day work week. Unless magical mermaids decide to pay off all my student loans for me. That would be great. So no neurologist right now.

Opthomologist said I'm fine and don't need surgery. Didn't want it anyway so we're on the same page. Plus I didn't like her.

Appeal for full genome sequencing letter will go out soon. My husband wrote the perfect letter and I hope it will work. My Metabolic Myopathy Geneticist is holding tight. I'm hoping that will illuminate some mutation that will be helpful to know about.

September 2019 Current Symptoms:

• STILL can't have an orgasm (that really sucks)
• Muscles shake after short burst of high intensity use
• Break out in a sweat if I "do too much" muscle wise. The bummer is I don't yet know what that "too much" is and it also feels like a moving target.
• Loss of muscle strength and energy through the day
• Pain in feet unrelated to activity
• General body pain (worse now, but could be from going down on the Cymbalta)
• Ptosis of both eyelids, right's a little worse (stabilized)
• Occasional dry mouth (this seems to only happen if I'm getting sick or having an "episode")
• Occasional choking (including that time recently that it was almost serious!)
  
  What's BETTER since June:
• Muscle cramps, spasms and twitches are being controlled with my Baclofen 20mg
• Occasional headaches, constipation and urination delay is all much better. This could also be from the Baclofen? Would make sense given it's a muscle relaxer.
• Feel closer to being able to have an orgasm (Yay! Again, could be from the Baclofen)
  
  
  
  I'm overjoyed that there has been some improvement. Moment to moment my life is still very challenging. "What can I do? Am I sure I can do that? I feel tired but can't rest right now. Push through girl! Pain. Pain. Pain. Stretch. Rest. Eat good foods. I miss Taco Bell. Stop doing things that make you feel worse! You need to rest. Don't forget to play. Time for work."
  
  And the next person who tells me to "Get well soon" might get a throat punch.