Asked for Help

I've definitely been feeling stronger and having more stamina since returning to the gym. I walked the dogs yesterday. A walk that I could barely do a month ago. One that left me in a lot of pain was suddenly (dare I say) EASY for me. I've also been able to stand still longer. Something that was incredibly difficult for me just a little bit ago.

Back in November I was seriously worried I would need to use my big chair again. Not that that's a bad thing. But it just means my muscles were very weak and I was feeling like I might need the extra help. We started bringing my travel chair with us wherever we went.  

All of this is leading me to weight loss.
I'm not going to the gym for weight loss. But to be stronger, more flexible, keep my muscles from atrophy and for my mental health. It's a special time set aside just for me and my body.

But I'm also not stupid. I know that the less weight I have, the less strain on my already compromised joints and muscles. 

My food craving have been just horrible as well. You would think the more I indulged them the quieter they would get? But I really think the opposite is true. So I asked my doctor for help (now I sound like one of those awful commercials.)

 My beautiful $149 pill bottle 
(with personal information omitted)

But I really did though. I asked if I could try the new Wegovy weight loss pill. All the others until now have been injections. I did try Zepbound injection a while back. The side effects were awful. I just felt like my digestion completely stopped.

I'm hoping that the brand and delivery change will be helpful. So far I have noticed a bit more burping and farting. But then again I am old. Hahahah. My doctor said she only had one other patient on it and that they were doing very well. The pharmacy told me that I'm the first for them and I'm to report back how it goes. So I'm a bit of a pioneer.

 LOTS of warning labels, but this aint my first rodeo.

Last night I had bad dry mouth. But that could have been from my fan blowing right in my face or allergies. I get dry mouth a lot, but it hasn't been that bad since I took Baclofen three times a day for muscle pain.

I hate to say it, but at 3:30 when I couldn't go back to sleep I paid the Devil his due (Amazon) and signed up for a one month prime membership. Just so I could get my dry mouth tablets (Zylomelt) delivered next day. I needed them bad for tonight. I'm not doing that again. Although I HATE giving the big A any money, my health needs come first.

 My nightly ritual

I was a bit stunned to learn you have to take Wegovy in a very specific way. First thing in the morning with 4oz of water exactly. Then you must stay upright for 30min. You can't eat or drink anything while the drug is absorbed in your stomach.

I measure out my water the night before and set the bottle next to it. Right after I take it I set a timer for 30min and keep myself busy. Blog, walk the dogs, write in my journal, tidy up. Man when that alarm goes off I am READY for coffee and water.

You're also supposed to have tiny meals, the first one being bland. Like a dry piece of toast or crackers or something. I'm already finding myself eating very small meals through the day. I think that could have been one of my mistakes on Zepbound. I didn't change my eating at all, then all that food just clogged up my gut.

Like the pharmacy, I'll report how it goes. 
Today is day 3. 

 

Taking Matters Into My Capable Hands

My very first blog post ever here was about "Plan Kick Ass." It was what I called a plan to rid all toxins from my diet and radically change my habits for the better. It has come and gone through the years. Typically with food addiction taking the drivers seat and veering me back into old habits. 

My dinner the other night. Cheese tortellini with gorgonzola alfredo sauce and roasted broccoli. It was even more delicious than it looks.

Cheese, butter, sweets, carbs... are all very hard for me to resist. Eight years later I'm ready to try again. But this time I have AI to help me.

With the help of Hal (what I call Copilot on my phone) I made a complete list of all the foods that are the very best for mitochondrial health. I then formed a meal plan around those foods. It is a complete, Vegan, protein and antioxidant heavy diet. No animal products at all. 

Matcha tea instead of coffee every morning.

What it also lacks are replacement foods. No Earth Balance instead of butter. No Impossible Beef instead of burger. And sadly, not even some fake buffalo "chicken" instead of real chicken on my salad. Nope. Whole grains, beans, fruits and vegetables. The closest thing I get to eating anything "fun" is dark chocolate. This... is... going... to... be... hard.

My research added to my 2026 journal.

BUT. If it will help me lose some weight to help my strength and mobility. Heal my mitochondria and allow me to have more stamina and less fatigue? Well... There's very little I wouldn't do for that.

First comes food. Then hopefully if I'm feeling stronger and more energetic I can increase my activity. Keep your fingers crossed for me. Welcome to 2026. My body won't know what hit it. 

Happy New Year!

Disease Management

There are many ways that I have learned to manage my disease over the years. Online resources have been hugely helpful. Back when I was on Facebook, belonging to a support group there led to some helpful suggestions.

This website has also been a fantastic place to gain insight and knowledge, even on topics like sex as a person with Mitochondrial disease. My Mito.org

Of course my mobility tools have been key. The unpredictability of this disorder can cause me a lot of anxiety. I don't know how long I'll be able to stand or walk on any given day. Keeping tools in the car makes that anxiety much less and sets me up for a successful outing or vacation. 

The biggest way I manage my disease is with medication, supplements and rest. Electrolytes too. I used to try to push myself through a day without rest, only to find I'm then over-tired at night and have a lot of trouble sleeping. If I take the time to rest I have a much better evening and better quality sleep at night. Strange, I know.

My medication is pretty dialed in now. It has been for over a year. My migraine management is the only thing that changes occasionally. 

Of course there are other things that "help." Like making meals simple. I typically just have a protein bar for breakfast. Even though my husband says that's not a breakfast, it's a snack. My favorite go-to dinner is a chopped salad kit (easier to eat than a normal salad) with faux buffalo chicken on top. 

Keeping positive and managing my mood is important as well. Talking with my husband and other family or close friends is therapeutic. I don't keep things bottled up anymore. Managing my stress is also helpful. 

Attending regular appointments to measure things like my breathing, heart and neurological symptoms is a must. I have from two to four appointments with my muscular neurologist a year. Four with my migraine neurologist (though I'm in the process of seeing a new person, so there's been a massive delay with my next appointment.) I see my primary care about three times a year for various things. Then usually some kind of specialist a few times in the year. A dermatologist or gastroenterologist. Urgent care is for things like I can't get my "bad ear" unplugged and it's starting to hurt, or a I have a UTI (happens about twice a year.)

Honestly just knowing what to expect and why something is happening to me has been incredibly helpful. Like the last time I went to the ER after my flu vaccination. Now I know if that happens again what it is, what to do and what to expect. I won't just be crying my eyes out scared to death.

Managing any disease is very complicated and time consuming. All consuming really. Now I need a rest. 

2025 Things That Help Me

Anything in the water is wonderful!

I've lived with chronic illness and disability now for a while. Through the years I've tried many tools to help me with my fatigue and muscle weakness. Many modifications as well. Here are some things I have learned that have been helpful to me.

1. Give in to sleep. I used to fight my afternoon fatigue like my life depended on it. I felt I was "weak" for giving in and resting. No more. Unless it's very important (I'm on a special vacation that I really don't want to miss a moment of), I rest every day. For as long as I need. Typically between 2-3 hours in the afternoon. I always feel better for it.

2. Use a stick. Even if I think I don't need it. I'm very prone to tripping and my stick has saved my ass more than once. 

3. Don't miss a dose. If I miss a dose of my medications I'm in hell. It's a very big deal with incredibly painful consequences. Now I let everyone I'm with know that and I set alarms. I never assume I'll just remember. Especially if my routine has changed and I'm out for the day.

4. I don't sweat "accomplishments." I used to feel huge pressure to "accomplish" as much as possible. To contribute something back to everyone and society. I let that shit go. Now I just do what I can.

5. Don't do standing what you can do sitting. Great advice. I try to remember this one as much as possible. Adding a stool to my bathroom was a game changer. I have low outlets there and a makeup mirror. Now I do all my bathroom grooming sitting down. A huge spoon saver.

6. Don't do it alone. I never go to any appointment alone if I can help it. I will always miss things that were said and the doctor's notes aren't always accurate either. But having my husband or my mom with me can not only help me remember what was said, but they can help advocate for me too if needed. Or help me remember things I was going to ask about (if I didn't write it down ahead of time.)

7. Keep good records. Keeping a list of all my doctors, their contact information and a list of my medication has been useful more than once. If I have questions going into an appointment I also try and send them ahead of time and bring it written down with me. I hang on to "after visit summary" sheets if it was an important appointment, if they gave me a referral or if it have medication changes on it that I need to remember.

8. Say "No." I'm still working on this one. I've gotten better about turning down things when I'm too tired, but I still can feel like a "flake" if it's too last minute. That also goes for modifying what I'm doing as I'm doing it. Leaving early, cutting outings short, etc...

9. Keeping things easy in the kitchen. Buying things pre-chopped (or getting my husband to do that part for me), having a food routine and having groceries delivered have all been helpful "tweaks" to how I used to do things in the kitchen. Also, using a stool when I cook is very helpful. Again... see #5.

10. Not putting pressure on myself. Period. This goes for sex, grooming, accomplishments, sleep, parenting... I tend to be an organized perfectionist, but that doesn't mesh well with the life of a chronic illness spoonie. My illness takes precedent and everything else comes second. It is the biggest part of me and demands to be accommodated. I try to keep that in mind of give myself grace.

Assessment and Plan

I am one of the few lucky ones.

I had my mitochondrial disease diagnosed fairly fast. I was believed and not gas lit by either my primary care doctor, nor my neurologist. I quickly worked my way up the neurology ladder until I was seen by the Chief of Staff himself who was the one to recognize my symptoms and diagnose me, even before I had my muscle biopsy and genetic tests. 

I also live in a place with world class health care. I am incredibly fortunate.

I have been seeing my "Muscular Neurologist" Dr. Lisa Williams at the UC Davis PM&R Clinic (Physical medicine and rehabilitation) for about six years now. At first she saw me every three months, now we check in every six months.

My favorite thing about her is that just like my handyman, she always has a plan. I come to her with a list of concerns and she comes up with a plan. I just saw her yesterday and this is my plan for 2025...

 Assessment & Plan

Mitochondrial Myopathy

Exacerbation of fatigue and severe weakness after flu vaccine. Generalized muscle fatigue without pain or cramping. Right side weakness reported. Stable with dietary modifications (medium chain fatty acid).

-Continue dietary modifications.

-Continue CoQ10 300mg three times a day.

-Continue Amantadine 200mg daily (refill 90-day prescription).

 

Dysphagia

Increased difficulty swallowing, particularly with soft solids. Choking reported. Last swallow study was normal. Referral to ENT for repeat swallow study.

-Continue monitoring and follow up with ENT for swallow study.

 

Migraines

Managed with new medication after discontinuing Botox due to side effects.

-Continue current migraine medication and follow-up with neurology.

 

Asthma

Increased symptoms over the past six months, potentially due to poor air quality.

-Continue current asthma management.

 

Neuropathic Pain

Severe, particularly at night. Pain is diffuse, intense, and worse with movement. Pain is primarily muscular. Current medications (Lyrica, Duloxetine, Amantadine) provide some relief.

-Consult with Dr. Chinar Sanghvi regarding potential innovative treatments for pain control such as buprenorphine or IV ketamine.

 

Impaired mobility and ADLS:

Foot Drop

Managed with Ankle Foot Orthosis (AFO) brace and soft brace for shorter distances.

-Continue use of AFO and soft brace as needed on the right. Strength stable today.

 

General Health Maintenance

-Consider low-intensity exercise classes for neuromuscular exercise.

-Consider use of a cervical pillow for neck pain.

-Follow up with sleep study results and potential need for CPAP.

No way am I going back to using a CPAP machine by the way. I get it for people who really need them like my husband. But I don't fit that category. 

Dr. Williams cares about my quality of life. She also learns a lot from me. She had another patient with similar genetic mutations try a "short chain fatty acid diet" with great success. I'm pretty sure I'm a paper somewhere.

My own plans this year include knowing my limits and paying better attention to them. Not pushing myself to "do all the things" and just try and be as healthy as I can be.

"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.

Patients Helping Patients

I belong to a Mitochondrial Support Group on Facebook. Honestly being able to message my son (he only uses "Messenger") and this group are the only reason I even have a Facebook account. "Mito Cafe: Support For Adults With Mitochondrial Disease." Where would I be without you?

I don't check in very often. But when I do I always find that I'm able to either help someone, or receive help myself.

New people to the site are always scared and overwhelmed. I totally understand. This disease is scary and overwhelming. Things can change or happen so quickly. I feel like I have no control over my body or health. It is very helpful to read about others in the exact same situation.

This was an interaction I had today that is very common. I feel very happy to be able to help others going through similar difficulties. 

Lizette O'Neill it really is terrible. I'm so glad you've found a good one. Can I ask what they do to help u with treatment? I shouldn't have gotten this far deteriorating like this... I'm so upset.

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Lizette O'Neill

Top contributor

It is very upsetting. I hear you. This is so hard.

I take a "mito cocktail" of supplements like most people here. COQ10 was a big game changer for me. I take 300mg of it 3x a day. Another very helpful treatment for me was Amantadine. It's meant for Parkinson Disease, but it helps me a lot with muscle pain and tremors. Then I take Lyrica and Cymbalta for pain and neuropathy (I have it all in my arms and legs.) The last thing that has hugely helped my energy is I take Nicotinamide Riboside 300mg. I learned that for this site. Someone said they were taking it and it helped them with energy. It helped me right away.

So yeah... a lot of pills. I've had all kinds of tests. A genetic test I recently had suggested I may not process "long chain fatty acid" foods properly. When I cut them all out of my life I was able to walk again and no longer use my wheelchair. That's pretty amazing.

Its taken me about six years to figure out what works for me. Even though we all have Mito we're all very different. I hope you find some help very quickly.