8 years and 4 months

It has been eight years and four months since I first officially reported having muscle weakness. July and August were rough. So rough that I haven’t blogged since July 16^th. I had my muscle neurology check in on August 27^th. Those happen four or two times a year with my muscular neurologist. My specialist. The captain of the “A Team.” (What I call my very long list of medical professionals.) She is part of the UC Davis PM&R Clinic. “Physical Medicine and Rehabilitation.” She sees patients with muscular disorders and diseases.

But I digress.

I saw her on August 27^th. I hadn’t been since December. Since then two things had worsened. My right ankle/Achilles and my breathing. I let her know in December and the appointment before that one that my breathing felt like it was becoming more of an issue. I could feel myself struggling most at night and in altitude change. Or pressure change (the weather or in the pool.) This time I really stressed that it was feeling worse and she had me evaluated by the departmental pulmonologist. It had been two years since I’d had a full evaluation.

Breaking out the ol' nebulizer

She found that my lung capacity and oxygen levels were still good. But my muscle strength (diaphragm muscles especially) had weakened substantially. They measured at about 85% worse than two years ago. It’s bad enough that she’s ordering a new sleep study for me and another “Cough Assist” machine. I hate that fucking thing.

Right after that appointment the air pressure shifted dramatically and I had gigantic issues breathing at night. I contemplated going to the ER, it was so bad. My mom bought me some wedge pillows that helped a lot. I slept very elevated and used my nebulizer machine twice a day. That kept me out of the hospital.

Hang in there girl!

I called and messaged the Pulmonologist to let her know I was struggling so bad and that it seemed connected to the air pressure shift. Her response was “Huh, that’s strange. I’ve never seen that before. I’ll let the doctor know. You already have your referral for the sleep clinic.” In short. “HANG IN THERE KITTY!” That felt very dismissive and shitty. And despite my multiple calls since, I’m still waiting on the sleep clinic to even schedule me for my sleep study.

Beautiful flowers from a friend

Worth living for

My ankle will require a custom made orthotic. An ankle brace since my ankle is unstable both ways and over-pronating. That means my Achilles keeps stretching out of place and re-injuring. Which is why it has hurt for almost a year now. Fuuuuuuuck… So a new custom ankle brace for that and new foot and leg brace for the drop foot (which I still have on the same leg.) Fortunately my left side is fine. Some good news.

Oh good Goddess
PANCAKES with my mom!
Worth living for
Absolutely

UC Davis is becoming shittier and shittier. The wait time for anything is 3-6 months. Next week I’m seeing the Immunologist. Something I’ve been trying to do for a year. I had to see my PCP twice, my muscular neurologist once and a Rheumatologist before they’d send me to him. What a huge mess. After that is the ENT. I’m seeing them for my continued right ear blockage that seems to be neurologically based. The nerve gets irritated and then my Eustachian tube blocks. Wheeeeeee…

Also coming up is my pain injection in my Achillies, followed closely by Botox round two. It took me eight months to get my Botox back. Jeeeeeesus H Christ…

On the good news side. My new migraine neurologist is someone I like and have seen before long ago. I’m seeing him in November. And my new anti-seizure medication (brivaracetam 25 mg tablet, commonly known as Briviact) seems to be working with few side effects. Dizziness and urinary retention only. I haven’t wanted to kill myself (yet) so I call that a win. Horraaayyyyyyy…

I’m displeased. Sad about how my body is taking a turn. I’m using my chair more and more despite going to the gym and trying to walk as much as I can. Everything seems to set my body off. I had a crown re-done at the dentist a week ago and have had nothing but pain and bruising since. The kind of pain that keeps me up at night. Most of the night.

But here’s some good things.

I always have a great time with my mom, John and my sisters. Max and Margo keep me smiling, laughing and company, even when I’m in bed. Ice cream Sundays and delicious sandwiches are still to be had. I have beautiful clothes to wear. I’ve seen some astonishing nature lately. Deer, a raven, a vulture eating road kill and a massive thresher shark breaching. The swimming pool feels amazing. I got to go to the beach the other week. Just hearing the waves and smelling the air was cathartic.

My drawing of the beach

My son loves me and gives me hugs. I have a good friend coming down to visit from Texas in September. I still beat my husband at games. Summer is almost over and I can smell autumn in the air. My favorite time of year. My 32^nd wedding anniversary is coming up. That seems hard to believe that we’ve been married for so long.

Saw some "Glossy Ibis" with my mama

I love seeing new things

Although it’s easy to feel angry and overwhelmed by my health and what I “can’t do.” There’s still plenty that I can do and that I GET TO DO. I can’t forget that.

 

 

 

 

Magic

If I was told 3 magic beans would improve my quality of life I would buy them and eat them. Move over Jack.

Every time I try something new, start a new regimen or try a new medication, I am hopeful. I am an optimistic person by nature. It shines through with regards to my disability. Each and every time it gets me. "Maybe this will be the one. The one that gives me my life back." Not even a "part" of my life. But my WHOLE life.

I love this image and I wish I knew who to credit it to.

"It may turn me into a marathon runner. Leave me migraine and head pain free. Give me back 100% of my body, pain free. Turn me into a sex maniac for my husband. Give me the energy of a 20 year old." Do you think my expectations are maybe a tad bit unrealistic? NEVER!

 Me in Ireland - 2016  

When we last went to Hawaii I actually thought I could do everything we had on our agenda. No questions asked. I really believed I could snorkel in the the morning, hit a museum in the afternoon and go out to a lovely dinner at night. All with just my rollator (if I even needed THAT I scoffed.) Want to guess how that went? I think it's the most I've cried on any vacation ever. Let's leave it at that.

Aloha from the hotel bed

But that didn't stop me from hoping.

I think part of it is the strangeness of my disease and the fact that sometimes something really will make a huge improvement. Or at least it happened once. When I changed my diet to short chain fatty acid. That was the most remarkable improvement I've ever made. It did indeed feel magical. I went from using my chair every time we left the house (and needing a wheelchair van) to walking on my own everywhere without even a cane or rollator. Remarkable. 

August 2023. Right before I started the short chain fatty acid diet

My doctors didn't know what to think. It was Genetics that found out I had an issue processioning long chain fatty acids. The funny thing is most people do. It just doesn't seem to affect them as much as it does me. It also affects people with Autism, though my son would never do anything about it. He thinks whisky is a health food. And who knows? Maybe it is? 

 My biggest magic trick. Walking again. August 13, 2023

When I was craving sugar and carb while battling it out with Lamotragine (for seizures) I thought maybe I just need a lot of sugar? I think that's true when I'm ill or in a muscle crash. I don't think it's true daily. I tried out a glucose tablet and it just gave me a bad headache.

I still have that "magical thinking" whenever a new issue is discovered. "Maybe I was having seizures the whole time and now that I'm on anti-seizure medication I'll be 'fixed!" Or "Maybe it was migraines and now that I'm on Botox I'll be 'fixed!" I swear I do this constantly.

But the truth I really need to embrace (yes, after all this time) is that I'm disabled. Severely so. I have a mitochondrial disorder. It is slowly progressive and degenerative. I survived a brain tumor. Both things impact me in a huge way. There is no silver bullet or magical bean that will remove those two facts. I require certain things to thrive. 

Pottery, creating things, spending as much time as I can with friends and family (both furry and non-furry.) Rest, rest, rest. Healthy foods, my medications (14 pills in the morning, 10 in the afternoon and 11 at night.) My medical team helping me stay at my baseline or better. Love. New clothes, HAH! All of these help me to thrive.

Time with my family always helps keep my spirits high 
and the gratitude flowing. 

I have good hills and bad dips. Just like anyone. I have happy days and miserable. I have days where I have extra energy to get a lot accomplished (like today.) And days where I just have to stay in bed. I miss gaps of time every day to rest. So my time is very precious.

My life just as it is feels magical most days. I'm full of gratitude for what I DO have and try not to think about what I lost. Things aren't "worse" just "different."

 

That Sweet Spot

I think I found the sweet spot. I made this venn diagram the other day and it really inspired me. Something clicked in my brain and I've been doing a very good job taking care of my body and making smart choices for myself. Even my cravings have diminished substantially.

 

I really spent time thinking about how my previous big successes could help me make smarter choices for my body and health. Where could they overlap and how could it help me. This was what I found that I need to thrive.

Support: From my family and friends. Everyone to know what I'm trying to accomplish and to check in with me regularly about it. 

My mom and I at our gym post-swim. 
#winning & twinning!

Example: For me to serve as an example to others. I do very well when I have people who look up to me. It's not an ego thing at all. It inspires me to want to do better. I feel more accountable.

Tools: I need the proper tools to thrive. Gym membership. Pool access. Water weights. Swim suit. Trolley to keep all my gym stuff in. Healthy foods that I can plan around.

Smoothie making going on up in here

Goals: I do well with both long term and short term goals. Like my big goal is to weigh 200lbs. But my goal this month was to get under 280 (goal already hit!) My goal this week is to lost 2lbs. My goal every week is to swim 3 days.

Small Steps: This not only applies to exercise, but to eating as well. I tell myself "What's the best choice I can make right in this moment. For this one meal, snack, right now." Then I do it again and again and again. Small pebbles can make a mountain. One grain of sand can make a beach.  

Plan: I can't accomplish anything if I don't have a plan. Meal plans, workout plans, weekend and weekday plans. I do best when I have a concrete plan and then I can modify as I need around it. With no plan I sink quickly and revert to ingrained habits that have been formed over a very long period of time. I'm looking at you Taco Bell.

Rewards: A little something just for me now and then keeps me motivated. Non food rewards of course. Even a small thing like a face mask or lipstick makes me feel good about my hard won battles and new neuro pathways that I've created. It keeps me going. 

This stunning constellation monstera was a little treat for myself. 

Doing it for myself:  I can't accomplish anything if I'm doing it for other people. It took me a while to get to that point when I was quitting smoking. Which is why it wasn't working at first. But when I decided to stop trying to do it for other people and to just do it for myself it clicked. Same with school. At first I was doing it just to get a job. But when I switched and did it for a career that I really wanted it clicked and I flourished. With health I can't lose weight for a trip or a big event. It has to be "just for me."

Patience: I'm AWFUL at being patient. It's one of my big weaknesses. But all of my successes have come with patience. I can't force myself to be successful and accomplish something no more than you can force a flower to bloom or a tree to grow. I can give myself the proper environment and tools for achieving my goals, but I have to just wait to get there. 

Failure is ok: It's through our mistakes that we learn. I firmly believe that. I have made every mistake you can make while trying to do what's best for my body. Setback after setback. And that's ok. I'm allowed to start over and over and over. A lot of life is like that. It's never too late to keep trying (unless you're dead.) And thank goodness I'm not quite there yet. 

 

Willpower my ass

So here's the thing. I have always had very good willpower as an adult. I achieved three college degrees in about ten years despite my ADD, contracting TB and taking my license examination during the beginning of COVID with a migraine in a wheelchair. I have willpower.

So why is having willpower with food so hard?

Addictions are different than other "accomplishment" based achievements in my experience. I once quit smoking and it was incredibly hard. I also "failed" many times before being able to stop for good. Now if I have even a drag I get an asthma attack and headache right away. It's almost like my body became allergic to them.

Staying in school was also very hard. There were many many times I doubted I could do it. When I became ill it was an even larger challenge. But I knew the finish line was close.

That's the thing. I usually do my best when there are small steps along the way. Read this book, ace this test, excel at that class, graduate and move up. Repeat till goal is reached. Fully licensed with Masters in counseling psychology. Goal achieved!

Why can't I do the same with weight loss?
Hit the gym today to work out in the pool with weights. Go back three days a week. Lose 5lbs. Repeat. Maybe because I also have to watch what I eat, when I eat, how much I eat. On top of working out? Hmmmm. But the goals are still small and (pun intended) digestible. 

I tried making a weight loss chart before with small goals and dates. That didn't work before. Tried portion control cups and plates. Naaaah. Prepared meals delivered to your door. Too expensive and not for us. Vegan, Vegetarian, Mediterranean, Atkins, high carb, low carb, no carb, pills, shots... You get the idea. So far nothing has really "clicked" for me.

Even my health wasn't the best motivator. My cravings and not so great habits are very strong. My addiction is very strong. I need to re-wire my brain and how I think about food. Fuel not food.  

I also do better when I'm accomplishing hard things with other people. A workout class, swim partner (my momma), making healthy food with my husband... Even better if I'm the best at it or an inspiration to others. Hello ego! I didn't see you hiding there. Even in school I would have "school friends" to go through classes or semesters with. 

Like school I just need to find a pattern. A key to what works for me beyond willpower. Because I don't see that as my main issue. I just don't think I've found what works for me yet. But I'm confident that I will. 

I'm STUFFED

I've been struggling with constant constipation for a long time now. Many medications I'm on cause constipation. Then I typically take emergency muscle relaxers or over the counter (OTC) pain relievers. That doesn't help the situation.

I believe that the stress I've been under with all the side effects from the Lamotragine I was put on for my seizures backed me up even more. In short, I was at a crisis point with my poor bowels. I had tried everything. I do mean everything to get them going again. Nothing was working.

As a last resort before calling Telehealth (again) I tried this anal suppository. And WOWZA did it work. If this happens again I think I'll use half, or even a quarter of the recommended dose. I am no longer stuffed.

 

 

This is part of the order I placed for Target pickup yesterday. I told my mom that the person making the delivery out to our car must have howled with laughter that I ordered both a frozen pizza and anal laxative. Mom and I cracked up for the rest of the way home. She said I must write a blog about it and take a picture. She made this perfect image for me to use. Thanks mom.

 

What would I do without her?

 

Not have this craving itch scratched for sure...

To be clear. I did not eat the pizza. I made myself lentil pasta instead. It wasn't great. That's the good thing about a frozen pizza though. It will hang out till you're ready.  

 

Now that I have a belly full of doughnuts and an empty butt I'm ready for a restful day. Hopefully this will re-set my system. Gluten can do that for me too. So SEE?! The doughnuts were really medicinal. 

 

BEHIND the Smiles

Coming off Lamotragine has been a nightmare. I still haven't heard from any of my doctors. I first reached out to my migraine neurologist on June 8th. Eight days ago. It feels like months.

You know the popular sign "Keep Calm and Carry On." Well my motto is "Keep Busy and Ignore it All." I smile and keep as busy as I can, ignoring my side effects. 

I'm still swimming with my mom. Walking the dogs. Cleaning my house. Shopping for groceries. Doing laundry. 

Lamotragine withdrawals can feel worse in people with mitochondrial vulnerability because the nervous system has less metabolic “buffer” during medication transitions.

I need sleep, electrolytes, pacing, gentle foods.

What often helps during lamotrigine withdrawal:

• Slow nervous‑system pacing — gentle, predictable routines reduce the “electrical storm” feeling. Short, repeated cycles of rest → light activity → rest help stabilize symptoms.

• Hydration + electrolytes — withdrawal can worsen dizziness, tremors, and headaches. Many people find that steady hydration with balanced electrolytes (not high‑sugar drinks) reduces the intensity.

• Sleep protection — even small improvements in sleep architecture can dramatically reduce withdrawal symptoms.Think: consistent bedtime, low light, warm bath, magnesium glycinate (if your doctor approves).

• Gentle sensory regulation — lamotrigine withdrawal often heightens sensory sensitivity. Noise‑canceling headphones, dimmer lighting, weighted blankets, and predictable sensory input can help.

• Blood sugar stability — dips can worsen tremors, irritability, and mood swings. Small, frequent meals with protein + complex carbs are often easier during withdrawal.

• Very light movement — walking, stretching, or pool therapy can reduce the “wired but tired” feeling without overloading your mitochondrial system.

I feel like this is going to be a very slow process. I don't do well with being patient. But I'm going to do my very best. 

 

Medication Induced Depression

(I'm too tired to come up with a pithy title) 

Uh oh. The Lamotragine that I’ve been taking for seizures has had some MAJOR side effects. This is the first time ever that a “Black Box Warning” has hit me. And it hit me HARD. Hard is actually an understatement. It’s awful. As soon as I hit the maximum dose I became so depressed I was suicidal. It slowly creeped up as my dose increase. But it took me a while to connect the dots. Because at the same time I was also instructed to get off of Amantadine.

Amantadine has been a vital medication. It’s used off label for Parkinsons. But for me it’s very helpful for muscle pain and twitches/spasms. So being told to stop taking it has made me incredibly nervous. And for good reason. Exactly what I was concerned about happened. Though I was told that taking it would increase my risk for seizures. However, I’m at the point now that I really don’t care.

 My side effects from the Lamotragine have been:

• Horrible depression
• Urinary retention
• Headaches
• Insomnia 

After I felt like I should go to the hospital for suicidal thoughts I messaged my epilepsy neurologist. They said if it happens again to go straight to the hospital. They also decreased my dose from 300mg to 250. I’m going to very gradually go off of it. They can just put me on something else. It will take about a month for me to complete the decrease.

I am eager to say the least. I wish I could just stop taking it. But that is dangerous and can bring on seizures.

My depression used to be a zero. I would say that I had no depression at all (despite my challenges.) This week it was a 7-9 out of 10. Incredibly high. And I realized something. When I’m depressed I eat and eat. I give in to my food cravings 100%. And like the depression, at first I wasn’t connecting the two. Only the other day did I think “Maybe this is from depression?” That was after I consumed an entire 10 pack of Ding Dongs. By the way… they no longer wrap them in foil which is BULLSHIT. It also shows how long its been since I had one.

Pizza, ding dongs, crackers and cheese, peanut butter and chocolate ice cream, doughnuts. All have found their way into my house and into my mouth. It feels like one of those old “before the picture starts visit our snack bar” cartoons where all the food is animated and I just sit on the couch as they march right into my mouth. Jesus.

But I told my mom today. “I’m just going through so much right now that I’m giving myself a break.” I’m still weighing myself and logging it. I’m just not being hard on myself about that number. I know it will go up. Even if I’ve been gardening, swimming and working like a fiend on my house. That’s something else I do if I’m feeling emotional or not mentally well. I work on re-arranging my house and trying to “make it better.”

I’m back on a singly dose of my Amantadine. Next week I can increase it to two in the morning which was where I was at. Hopefully that will help my pain and muscle problems. I’m terrified that the depression will linger until I’m fully off the Lamotragine. Or even after. Fuck fuck fuck.