slowly learning

I'm 53 and still slowly learning what my body needs. Especially since becoming severely disabled. That was (of course) a game changer. I've always been the person in a group to take care of everyone else. The person who thought of everything and planned it all. The first to arrive and the last to leave. Well no longer. Now you can bring your own Excedrin because I travel light. 

Out with good friends.

I feel very proud of myself. We had company last weekend and I really listened to my body and what I needed. I let my husband plan everything start to finish. Some examples of changes I made are:

• I did Karaoke the first night. It was an energy stretch, but I rested before and ate healthy right before.
• I rested the next day at my usual time. I also had coconut water, a V8 and lots of regular water. Again, I chose healthy whole foods to eat.
• The third day I went to the gym and swam with my mom. Just went about my business while my husband hung out with our friends.

For me the gym has become non-negotiable. Just like a doctor's appointment. I feel so much stronger and healthier in general. My mom does too.

Day two. Out for veggie sushi with friends post-nap.

I'm also learning I have a lot less pain when I avoid sugar. Easier said than done.

If I stick with whole foods I feel my best.

Using my tools and researching new ones has also been vital. For example. I've been having killer heel and achilles pain for a while now. All the exercises to stretch it out were just making it worse. That's because it's not just achilles tendonitis. It's Insertional Achilles Tendinopathy. What a shocker. One of the causes is "muscle weakness" in the foot. Stretching will just make it worse and more irritated. I learned instead what I need is shoes that elevate my heel and point my toes down.

My first time at Karaoke. It was such fun.

I only have one pair of shoes like that. Flip flops that I nicked off my mom. But I ordered some inserts that I can put in any shoe I like. That should be really helpful. I'll also keep off it in the pool. No more stretching that foot or kicking off the side when I swim.

This is all literally the opposite of what my muscular neurologist told me to do. Sometimes the doctor doesn't know best. Right away I was feeling relief when I put on those flip flops. Now I need to break my habit of walking barefoot around the house. Dang.

Point is, I'm learning to trust my intuition. My inner voice. Myself. Learning from my mistakes and caring for me. Putting myself first over the discomfort or inconvenience of others. And that's no minor thing. 

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. 

Remembering the Basics

I got into a situation the other day where I was foolishly without a mobility tool. Even now, when I think I'm doing so great health wise, I have to remember that the smallest thing can set me off. I've been struggling greatly with the weather causing migraines, which then triggers my mitochondria to focus all their energy on that. It leaves me weaker and even more tired than usual.

Standing is tough for me even when I'm at my best. Standing for a few minutes can be torture. 

We had taken our nephew to an art gallery's "comic book day." It didn't even occur to me that there would be standing involved. Why? Because I'm a perfectly healthy, able bodied person of course. So when the standing and looking at things started, I felt myself beginning to struggle. It got to the point where I was literally pouring sweat, shaking, trying to keep it together and stay with him and my husband.

Common sense finally got a grip and I went to sit down with my portable fan. Thank the Goddess that at least I brought that with me.

When assessing the situation later I realized I should have recognized the day would involve a lot of standing and brought along my rollator. I have the tools. I just need to remember when to use them.

So I came up with this lovely little reminder for myself.

• If I'm going on short walks and I'll experience mild fatigue (or already am) I'll bring my stick.
  
  
• If I'm going on longer walks with moderate fatigue (standing more than a few minutes involved) I'll bring my rollator.
  
  
• If I'm having severe fatigue or muscle pain I (or am expected to stand most of the day) I'll bring my travel wheelchair.

Even though I've been disabled for years now I can still forget the very basics. 

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.

From six wheels to two

Eight months ago I was using six wheels. My beautiful Permobil pink wheelchair and I owned the streets. She got me from A to B in style and speed. Topping out at 7mph she was ahead of her class. Now she is parked in my garage, lovingly draped in my favorite shower curtain (occasionally holding laundry for me to pay attention to.)

I love this picture my mom took of me last year.

I now have two wheels. My stunning new Lectric bike tops out at 20mph. I've only taken her 15 because I'm a big scaredy cat. Even though I always wear a helmet.

Shopping online, but I bought her in person at a REAL brick and mortar store.

My first day out.

I wanted an electric bike since I became mobile again. I originally thought I would get a three wheel trike. It turns out when I went to test ride them I hated it. I felt much less unstable on three wheels then I did on two. Maybe it's because I used to be a recreational bike rider, so it is what I was used to? It's amazing how muscle memory really works. 

Test rides were important for me.
My first time on her!

I feel so fortunate to be able to ride a bike again. My bike not only helps you pedal as much as you need, but you can also ride it like a moped with just the throttle engaged. So if I ride it somewhere and get too tired I can just sit there and cruise.

I feel like I'm 10 again when I get on it. So free. My next purchase will be a rainbow pinwheel for my handlebars. Don't be surprised if you hear me zoom past you house yelling "Wheeeeeee!!!"

All the ways I help myself

It took me a long time to learn how to listen to my body and to give myself what I need. I think it was graduate school that knocked that message into my thick skull. That I HAD to take care of myself before I could take care of anyone else.

Since becoming disabled that lesson has only grown. I had to become a strong advocate for myself and learn how to listen to what's going on with my body. It's the only way I could get help from my doctors. 

Here are a few things I'm into at the moment that make taking care of myself fun and easy.

My monster mug

My 40oz mug from Target. I drink about 3 of these a day. It's lighter than it looks and has saved me more than once when I thought I'd have a quick medical appointment. I only keep water in it and I hand wash. Totally worth it. It's lighter than many of my smaller travel cups. Water water water.

Fidgets

I struggle with dermatillomania. I've had it my whole life. My mom says I use more band aids than anyone she knows. This is more often than not the cause of that. I've been making a real effort lately to tame that beast. This comes in the form of fidgets. I have spinner rings and bought this new zipper bracelet as well. I love it. 

Still disabled!

I'm not a Wonder Woman ALL the time. Some days I'm in more pain than others or I've tweaked a muscle. Then I use my disabled parking plaque. This is an easy way to help myself. Save my spoons and make life a little easier to prioritize my energy.

Joint compression

Another thing I do is make sure I have the right equipment to combat muscle pain and fatigue when I need to. Like the right shoes, braces and medication. These Crocs are amazing. A gift from my mom. But when I'm really out walking my high-top boots are best to secure my newly weak right ankle. I pay attention to my body signals and do my best to help myself. I'm very fortunate to be able to have access to the right tools and tricks. 

 (I was not reimbursed for any of these products. It's my personal opinion only.)

Meet Evangeline!

Introducing my newest wheelchair "Evangeline!" She and I have gotten off to a rocky start. She was given to me (thank you health insurance) the week of Christmas 2022. I've had her six months, but she and I are only just now getting along.

What happened?

I'll tell you all about it.

See... she is FANCY. I was intimidated the second I sat on her. She can move in any and all directions from zero gravity to six feet in the air. Working her controls feels like you're working a forklift. She's very complex.

She also doesn't like rough terrain. She likes smooth, even pavement. No grass, dirt, mulch, rocks, tips or anything other than flat and hard. Honestly I think she was made for Las Vegas or shopping. She's not an adventure girl. She's your Jimmy Chu shoes.

Then there was the error code.

Any time I tried to use her lift or tilt features I would get a flashing error code. I have had her serviced five times already and a part replaced once. Another part is on the way to be replaced as I type. She's a finicky Swede. Yes. She's made in Sweden. 

It's like a car. The more complicated it is the more that can go wrong.

Then there was the incident that happened on vacation.

I thought I could roll down a very steep, slightly slanted driveway and be ok. I was not ok. Evangeline locked her tires and I slid down the driveway and into the street. Luckily there were no cars at the time, but I did throw off a touring group of bikers and made one tip over. She doesn't like uneven surfaces. FLAT! FLAT GROUND ONLY!

My repair guy said "yeah. There's no way you were going to make that. Maybe next time circle back and avoid doing that." Thanks dude. Super helpful.

So she and I have had a challenging relationship.

However...

She's also really amazing. And pretty. And comfortable. She can adjust to me in any way. And I love the lift function (when it works). I always get comments and questions. Most people haven't seen a chair that could lift up as it's still a pretty new feature.

I just had to learn to get comfortable driving her and she had to be adjusted quite a bit to fit my needs. I think we're almost there. And I always have Dory for adventures.

Emotional Intelligence

The most important skill that I have learned is how to not let other's emotions and my own emotions impact me. Even now it is still challenging to remember to use my techniques to not let strong emotions affect me. But my ability is there and more often than not I can manage it.

What's the secret?

For me it goes like this...

1) NOTICE. I can't change anything I don't notice. I notice my own strong negative feeling and how it's affecting me physically. Or I notice that someone close to me is having a strong emotion and how it's making me feel physically. Step 1 glides right into step 2.

2) FEEL it in my body. Does my chest feel tight? Has my breathing sped up? Are my shoulders rising?

3) CHANGE. I slow my breathing intentionally or take a deep breath if my breathing stopped. If the negative emotion is external then typically the person will also take a deep breath automatically. I relax my shoulders and check my posture. 

4) VISUALIZE. If the emotion is particularly strong, it is helpful for me to take a moment for some internal visualization. I picture the emotion as water washing over me, but not through me. Or I'm sitting on a riverbank watching the emotion go by, floating on a leaf. Sometimes I picture my emotion is a stone that I'm holding in my hand. This helps me examine it more closely. Why am I feeling this? What can I do to resolve it?

For example... Something happens to make me feel angry.

1) I notice that I'm feeling angry.

2) I feel the anger as a knot in my stomach and see that my fists are clinched.

3) I actively unclinch my fists and start deep belly breathing.

4) I hold the anger as a fire ball in my mind and examine it. What just happened? If my anger is valid, I imagine I let it go like a dragonfly into the universe. If not I look within to see why what just happened made me feel so angry. Am I instead feeling afraid, vulnerable? Anger is often a shield for other emotions.

I can easily go through life being continuously reactionary. It's not at all hard to do. I'm very empathic and pick up on other's emotions easily. Being able to filter out what warrants a reaction and what is just better to let pass is the most important skill I've learned. It helps me feel calm, centered and saves my energy for much more important things like love.

(Not a) Damsel in Distress

"I'm a damsel, I'm in distress, I can handle this."

-Meg (Disney's Hercules)

Something happened yesterday that was a new experience. My wheelchair broke on me. I should clarify that my wheelchair broke on me while I was ass high up in the air. You see... I was trying out the tilt feature on my chair as I've only used it for little tilts, not mega tilts and I wanted to see how far it would go. I felt like I stopped it even before the max limit. I laughed with my mom as I laid there, until I realized I was really stuck.

My mind quickly went into problem solving mode. I'm the girl you want with you in an emergency. I realized I couldn't do anything about the situation laying on my back like that. So I asked my mom to help me get out by removing the side arm and letting me brace myself on her arm. Fortunately I have legs that go on for miles, so I was able to very carefully shift to the side and wiggle my way down. I was up very high, so I was ultra careful. I moved gingerly to keep my center of gravity in the middle of the chair as it could very easily tip over.

Like a wounded ninja I slunk out of my beloved Dory and made it safely to the ground. Step one was complete. I knew it was some kind of mechanical error because the control panel would switch on, but just stay on the home screen. I had no control over it and could only switch it off and on. My first thought was to try and reboot the electronics, but I had no idea how to do that. I started looking for some kind of button, or way to unplug it from the battery. 

Failing both of those I knew I had to call my wheelchair company. My dead phone disagreed with that decision. Mom to the rescue again! Thank God I wasn't alone. I would have just been laying there calling for help. And thank goodness I still had some mobility. I don't relish being rescued by the fire department. 

First I called the main number, then I was transferred to my local servicer, then to the voice mail of my "service manager." Not to be waylaid I called the local number again and this time I reached her. Then I was transferred to the main corporate service department for tech help. The "expert" had us install an app so he could see the "problem" via live video. Now I was hoping for some actual help! Uhhhh... no. The guy told us about the "secret button" to restart it, but it didn't work. (But now I know where it is.) As I was on another long hold I was examining Dory and seeing what could have gone wrong. Then I saw it.

Right in front of me I saw the hinge that rotates when the chair tips back. Pinched in that hinge was the small, black power cable that connects to my control box. The cable was pulled tight and right away I knew what happened. The cable became caught in that hinge when I was tilting back and the more I tipped the tighter it was pulled. EUREKA! But when the tech got back on the line he sounded dubious and doubtful. He put me on hold again. My mother and I figured out a way that we could create a little slack on the cable by lowering the arm rest and turning the control box to the side. It worked! We had enough slack on the cable that it came out of the hinge.

I tried turning the chair back on and nothing happened. I turned it back off and rubbled the cable a little where it was pinched. I think we all deserve a nice rub after a traumatic experience. Well, I must have magic hands just like my husband because Dory turned right on and I had controls back. "Mr. No Help" came back on the line and I explained what just happened. He acted like that was the end of the call. I told him directly that I would be needing a service visit and a new cable because this one was obviously now compromised. "Oh... Ok" was all he said. (Jesus give me strength!)

So with zero help from my wheelchair company I discovered the problem and fixed my chair myself. Jeeeeeeeze. I won't bore you with more details of what happened this morning when it looked like Dory wasn't charging, but suffice to say that I'm getting a loner chair delivered in 3 days while a new controller with cable is being ordered.

I felt horrible for people with no mobility who really would have been stranded. And why had my 60K chair not worked 100% right the first time I used tilt? I JUST had work done on it. It should have been tip-top. And what about people who aren't skilled at getting what they need over other phone? Or who just don't have the energy to be persistent? Or who don't have a strong Mama with a full phone right there? Or who can't afford a 60K chair to have it break down on them in the first place?

Disability is hard enough not to add cruddy companies on top of it. I shouldn't have had to find the problem and fix it myself. They should have not screwed up when putting my chair together so it would happen in the first place. 

People have an emergency number to call if their car breaks down, so why not an even more important mobility device? Why aren't they insured by the companies who provide them (at an insane cost I might add.) 

The more I live my life as a disabled woman, the angrier I get at our broken system. At people parking in the disabled van spot. At the lack of affordable equipment for people who need it. At the crazy long waits to get anything done on repairs. At the total lack of any oversight and quality control. At the lack of accessibility and representation I see everywhere. I wish I had more spoons to actively fight these injustices. 

Ways to stay calm

I have a dentist appointment today. It's my first one in a few years. Ok, more like five years. I'm a serious dentaphobe. As I was tooling up to stay calm before my dentophobia took over, I thought I'd share what helps for me in these situations.

Everyone has something they're afraid of and with a chronic illness you're likely to have to face those fears over and over again. I know I sure have! So here's some tricks that help keep me calm.

1. Timeline. I try and keep it all in perspective. It's a blip in my day (week, month, year) and will be over pretty fast.
2. Bring something to hold. A small rock, shell, Beanie Baby, whatever. It helps me if it's something heavy to help keep me grounded and relaxed.
3. Check your muscles. When I'm stressed I tense up a lot. Checking in with my body, especially if I start to feel pain and intentionally relaxing into it is really helpful for me.
4. Pick a smell. For me nothing makes me happier than the smell of my husband's deodorant. I equate that smell with him. Mix it with Irish Spring and Head and Shoulders and I'm over the moon. But for something like a dentist appointment stealing his deodorant and wearing it for the day is enough. It's like he's there with me and that helps me relax.
5. Be comfy. Many times I would have no control over a situation, but I can control what I wear. I skip the bra and wear clothes that make me feel happy and relaxed.
6. Treat yo self. I can't tell you how many times the thought of a chocolate shake or a caramel apple cider pulled me through stressful medical procedures.
7. Bring a soft blankie. Another trick I've done that was super helpful. Hospital blankets suck, so having my own has been helpful many times.
8. Have someone you love take you. My mom is taking me today, though she won't be back with me. But she would if I asked. That's love. To sit in the dentist office for someone!
9. Visualize. Everyone should have a calm, happy place they can easily go to in their mind. I have at least ten. Use it and transport yourself.
10. Breathe (if you can). It's not always possible to take a deep breath through things (spinal tap, MRI, dental crap), but if you can try and notice your breathing and keep it calm and slow.

Make Life Easier

Over the past two years I've learned ways to tweak my environment to save spoons. For example, opening a dresser drawer takes WAY more effort than putting something on a hook. I also have learned to not sweat the small stuff. Like taking time to turn my clothes all right side out all at once. It's easier for me to just do it one at a time as I wear things.

Here's a few modifications that have been incredibly helpful for me.

• Sit whenever I can instead of stand.
• Lean instead of free stand.
• Plan ahead.
• Think outside of the box (like my dresser is now just storage for things I don't use often like sunglasses and extra blankets).
• Work around your energy needs - if showers leave you exhausted, take them before bed instead of first thing in the morning.
• Use empty wall space as storage.
• Keep the things you use the most within easy reach and out in the open. (I love using a variety of pretty little bowls for things like hair clips, jewelry and my anti-vertigo bands.)
• Use bins instead of hanging things up.
• Use wall hooks for clothes or pajamas you wear the most.
• Using "travel size" instead of full size products.

In the kitchen I have a stool that's adjustable to sit on when cooking, but honestly my husband and mom feed me most of the time. It's not a job that I miss. When I do cook I keep it simple. That makes it healthier and saves my energy. We also meal plan weekly together, that way there's no stress around dinner time.

In the bathroom I love my shower stool and bars. I feel like everyone needs both in their shower even if they don't have any health issues. They didn't cost much and I use them every time. I also use bins, bags and hooks in the bathroom for my stuff. I've learned that "travel size" products are lighter and easier for me to use, so that's what I tend to buy. I've also cut WAY back on the number of products I use. "KISS" in the bathroom. 

Each spoon of my energy is precious and these minor tweaks add up fast for me. 

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.

Wheelchair Van Shopping

Terrifying, daunting, uncomfortable, overwhelming... maybe those words begin to describe what it's like to shop for a wheelchair van. These are just a few reasons I suspect most wheelchair users choose to either not go out much, or to take public transportation. The other reason? COST! DAMN! I mean come on! The prices of these vans will take your breath away.

My husband and I began thinking about pulling the trigger on a wheelchair van this summer. We're fortunate enough to have actual options in the city we live in. Most people I think are stuck with a single dealer or buying private. I thought I educated myself and was prepared ahead of time from internet research. Nope. So let me break down my experience for you so far in the hopes that it might help you out in your search.

That's some serious "RBF" going on there!

Step 1: Find what kind of ramp you want.
Electric? Manual? In-Floor or out? There are many options here. I want an electric "Fold Out" which is not the same as "In Floor". The reason is because if the electric equipment has a malfunction (and we know how common that is) then you can still manually get your ramp up and down. You're not trapped in your chair till some magical help comes along.

Step 2: Will you ever be driving?
I've heard a lot of stories from people who thought they would drive, but then due to their progressive condition only drove for a year or two. It ended up not being worth the huge expense of making the drivers side accomidate their needs. Case in point. When we first started looking I was still driving. I was interested in a "Transfer Drivers Seat" meaning I could easily transfer from my chair to the drivers seat to drive. Well, I'm no longer driving and I don't need that expensive feature.

One of the many benefits of buying a van from a dealer vs private party is that as your needs change you can have your van modified. For example I don't need a transfer passenger seat yet, or a chair lock down in the front instead of a passenger seat. If that changes in the future I can have our van adjusted.

Step 3: What kind of van do you want?
This is called the "Chassi" in the wheelchair van world. Common makers are the usual. Honda, Toyota, Chrysler, Dodge. Each comes with their own pluses and minuses. I am very tall with long legs and an "ample bottom" so having a comfortable, roomy passenger seat is really important to me. Also due to my chronic pain, seat heaters are really a big plus. Because of these and a few other important features I'm hoping to buy a Chrysler Pacifica Touring-L Plus.

Step 4: What's your budget?
Wheelchair vans range wildly in price just like regular cars. Also like a regular car you get what you pay for (in my opinion.) The older the car, the more miles on it, the less expensive it will be. You will need to consider--The Chassi Price, Conversion Price, Equipment Cost (tie downs, modifications to your chair to be locked in, transfer seats, driving mechanisms...) and Warranty. Then of course there's taxes, documentation fee, license fee, smog, registration and every other nickel dime fee there is. 

Some Chassi brands will give you a small rebate. Usually around $1K and only if you're buying brand new. A super small drop in the bucket. In my state there are no programs to help you with the cost. It's considered a "non medical necessity". Though my dealer mentioned we might be able to deduct the cost of the conversion and equipment as a DME (durable medical equipment). We'll check with our accountant about that.

And some cars have lease options instead of buying. But I have found them to be too rich for my blood. However if money is no object and you just want to have the best you can buy it should be an option to consider.

I was happy to hear that there are programs where veterans can get a van almost completely covered (they should be able to get whatever they want for free if you ask me). And my dealer said "Victims of violent crime get a 30K payout to put toward the cost of a van". 

The van we're considering is a 2017 (two years old) with super low miles. "Out the door" it will cost $61,094.87 to purchase. Luckily we have excellent credit, but I was told that financing a van can be difficult as it isn't treated like a typical car purchase. You can also get financing for up to 10 years to make the monthly payments a little bit easier. For us those payments are still 4x our current monthly car payment so that's a huge, scary undertaking.

The next steps are to talk to our banker about it, sell my husbands car and pray that my student loan debt is forgiven due to permanent disability. I'm checking the status on that daily. Hopefully we can pull the trigger soon because it would really improve my quality of life to have "Dory" with me whenever I need her.