Hello Body! Nice to Meet You!

This is the third week my mother and I have been going to our new gym. We have been trying to go five days a week and making it four. Something always seems to come up once a week. So far that "something" has been me feeling ill.

When we joined the gym we were give two free sessions with one of their trainers. That's pretty typical for around here. My guy was great. He's a pro boxer very into fitness. I told him my story and he was amazed. Then he had me do 60 squats. 

Punching things is FUN!

I had on my knee brace to help support my larger, painful knee. So I thought all was good and I could do anything he told me to with zero problems. It went down a bit like this. We spent a lovely 45 minutes together with him taking me from machine to machine lifting between 40-20lbs. I pushed myself HARD and did it all. I was even rewarded with him declaring me "feisty" when I tried to jump the gun on a few seconds of rest to do more. That's my nature. I push. 

Also... I like impressing people. I enjoy finding my limits physically. And as I told him. "It feels good to have some pain that I'm causing. Not that's happening TO me and that I have no control over." The results? Basically my body heard me say that and went "You like pain lady? Here's some pain for you!" 

Uh oh. I over did it BIG TIME! I mean "want to scream just trying to sit down on the toilet" level of over doing it. 

At first I felt mad at the trainer for pushing me so hard. I mean, he SHOULD have known better, right? Wrong. The person who pushed so hard was me. I was the one who should have known better. I should have been listening to those pain signals and realized I was going to be in a world of trouble if I didn't reign it in. It's my body. It's me.

Not even the hot tub could save me from this poor choice.

In my defence, I'm still getting to know... well... me! And I'm naturally "feisty" and a limit pusher. I tend to go in whole hog, then pull back later. That's just my nature. I'm not a "dip my toe in the water" type of person. Hence that often leading to injury.

So here I am two days later still in a lot of pain. Last night before bed I took: 1 prescription muscle relaxer, 3 Ibuprophen, 2 Acetaminophen and when that didn't work finally a CBD/THC gummy. Then I was able to get to sleep. Lesson learned. I want to/need to get used to pulling back and listening more to my body signals. 

Reprieve

After my recent night of desperation I put into action some things that have been helping out my incredible pain.

1) Made a tote bag full of all my resources. Creams, gel, pills, patches. All the stuff I have for pain. Now instead of just laying in bed in pain I can grab that bag, go into the bathroom and choose something to try and relieve it.

2) I found my "stash." Back in 2020 I tried some CBD/THC products to help my pain and migraines. It worked, but I didn't like the side effects. I kept most of it and found that the high CBD low THC gummies did help my pain quite a bit. 

3) Tried something new! I found some new cream that so far helps better than any other topical product I've tried so far. All CBD. No THC.

I'm also being very watchful of my activity levels and how I use my leg. I'm trying to really be vigilant to give everything a chance to heal up. So far it still hurts, but not at all like it was. I'll take it!

Let's Leg It

My skin is doing much better. I feel very proud to have made something that helped it myself. I'm also feeling more confident and more "myself" since coloring my hair. But there's been something else going on that I haven't talked about. Leg troubles. I want to document it for myself here before I forget the details. 

In the last week of December (almost 3 months now) I woke up one day with what felt like a horrible shin splint in my right shin. It honestly felt like I had been running all night in my sleep. No injury. No trauma. It just was there. 

I tried resting it, icing it, putting a brace on it, keeping off it as much as I could. And every time I would think it was getting better I would get a sharp stabbing pain behind my kneecap and the process would start all over again. The shin splint pain changed to a radiating pain from behind my knee down to my ankle (and lately to my foot and toes.)

This cycle went on for about six weeks before I finally caved and wheeled myself to the doctor's. Sadly I couldn't get in with my usual doctor and even though the one I saw was very kind, she's not my doctor. I had x-rays done, an ultrasound and was scheduled for an MRI that's still three weeks out. 

Keeping off my leg as much as I can

But... my pain has been so intense that I messaged my regular doctor about it. He just saw me Monday. He was concerned and ordered labs and for me to see a sports doctor friend of his who knows leg anatomy like the back of his hand. Get it? Anatomy humor for you.

My labs came back mostly normal, but three indicated inflammation markers that concerned him. I had also shared with him that my immune system has been particularly off lately. Along with my complexion going to hell I've been getting hives off and on and red spots in different places. I'm managing it by taking anti-histamines and using topical hydrocortisone cream. My doctor thinks this might be connected to my knee.

The sports medicine doctor got me in to see him the very next day. He was a wonderful man who took his time with me. He examined me and agreed with my doctor that it is likely something autoimmune happening. He suggested I get a referral to see a rheumatologist. 

He explained that my leg pain sounds like it was muscular to begin with, but turned neurological over time. He expects it will go away on its own (which was a big relief to hear.) He suggested some CBD ointment. And if that doesn't help some CBD/THC ointment or/and tincture.

I appreciate how out of the box a lot of doctors think now and aren't just stuck on prescriptions. Even though he admitted I'm already taking everything he would recommend.

So that's where we are right now. My doctor suggested I take 650mg of Tylenol for Arthritis 3x a day along with Diclofenac 3x a day. (I use my prescription Diclofenac/Voltaren along with Penetrex 3x a day.) I just ordered some CBD lotion to try.

Next steps are waiting to hear back from my doctor and attending my MRI on April 4th. The thought of seeing a rheumatologist again makes me nauseous. The last time was when this all started with a bang. Sudden muscle weakness in my legs and me sobbing in the hospital parking lot. It will be hard for me to forget all of that and move forward. But pain is a good motivator!

The Curse is Lifted!

I have my days back

I'm thrilled to share that I FINALLY found something that keeps me awake all day long without any side effects. It's THIS! Orgain Organic Nutritional Shake.

This is the first one I bought and tried.

I have no idea why it works for me. 

My guess is that my body just doesn't absorb nutrients correctly to get them to my mitochondria. So I would be totally depleted of energy by the afternoon. But when I consume a lot of them in liquid form my body can somehow use it more efficiently than by eating. 

I'm so grateful that I found this product and that it works. Now I'll be looking around to see if I can find other things that work just as well but for less. Each drink costs me between $1.90 and $2.50 depending on the flavor. I use it as a meal replacement, so it's not as bad as it sounds. But since I'm unemployed right now I want to try and save us as much as I can. I'm also curious if something like a vitamin water would work just as well or if it has to be with protein too.

At first it felt really strange to have a full day back. Like I flew to another country where their days are twice as long. Now after about two weeks of it I'm getting more adjusted. It's wonderful! I still have to be careful not to do too many things at once. 

If I spread my activity out with resting a lot in between I feel much better. If I push myself I'll end up with shaking muscles and sweaty. Then it will take about an hour for that to stop. Ugh.

I have a check in with my muscular neurologist this week where I'll let her know about it. I want to discuss my increasing pain and muscle spasms with her. 

I haven't used the CBD/THC pen at all since I discovered the drink worked even better with no side effects. One pen cartridge is the same price as 12 drinks, but it's much better for my lungs. I also never drive with the pen and I can drive a little in town normally. That's a big thing to have to give up to stay awake if I used the pen instead.

I can't tell you what a relief it is to have a big chunk of my life back. I'm so grateful that I stumbled on this product. Fingers crossed that it keeps working!

I have zero affiliation with any product I ever talk about on my blog and received no incentive to write about it. 

Desperate for help

I've been messaging with my doctors for the last month about my increasing pain. I've shared my struggles with neuropathy in my arms and legs, especially at night. I've voiced how I feel like I'm being pulled apart on a torture rack. I've stated that my pain makes it very hard for me to complete simple tasks and leaves me chronically exhausted. And then there's the afternoon crash. Missing out on three hours of my day regularly.

The Epicacten did help with this crash, but it left me feeling like a jet lagged tourist who downed a bunch of espresso to try and stay awake. Foggy headed and still exhausted, but unable to sleep. Not really much of an improvement. 

My primary doctor increased my night time Lyrica dose and that did help the neuropathy a bit. My muscular neurologist increased my Baclofen from three times a day to four to try and help the muscle cramps and spasms that were also increasing, but it did not help. That's how medicine goes! Sometimes things work great, but often they do not.

Then I did what I do best. I started researching some more on my own about Mitochondrial Myopathy and mito diseases. And there it was. The exhaustion, the pain, the neuropathy, everything I experience. What I also found was successful interventions using marijuana to combat the fatigue. 

In the past I've tried high CBD with little to no THC and it never did that much. It could help with night pain a bit, but never enough to warrant the cost. It's not like my insurance covers our (legal in my state) dispensary! Too bad. 

Due to my previous lung conditions and my asthma I've never tried any kind of inhalation, only edibles. But the more I read the more I learned about vaping and how it is better than edibles for pain and energy in many ways. It's instant, you can control the dose better, it's more cost affective and best of all the drug doesn't go through your liver and kidneys, but straight into your blood stream from your lungs.

I researched the best strains for energy and pain. Then armed with this knowledge we went to the dispensary. The employee was very helpful and set me up with a vape pen, cartridge and night time pain gummies to try. She also helpfully explained that if you're trying to help pain you need THC. "Without a little high you can't get rid of pain effectively". 

I'm going slow with it and learning what works best for me, but on the very first day of using it I didn't need a nap. Last night I didn't have the gummy and for the first time since I started taking it I had painsomnia. I'm now going on day FIVE with no mid-afternoon crash. It feels amazing. My pain is also much more manageable. It isn't helping my mobility or muscle issues, but the pain and fatigue are very much improved, so I'll take it!

A doctor of mine did get back to me with another medical suggestion. The medication would involve a hospital stay and the side effects were very risky. For now I'm good with trying what I have. If it becomes a permanent part of my coping tools, then I'll inform my doctors about it. But for now I'm still in the trial phase.

This is by far the best recommendation list for dealing with exhaustion. Shared from the Mito Action Group. 

General Guidelines for Dealing With Fatigue:

Rearrange Your Environment

• Keep frequently used items in a location where you will use them. This avoids having to carry them around or do extra walking to get them.
• Replace existing heavy items with lighter one (plastic vs. glass).
• Use good body mechanics – don’t carry equipment if you can push it. Slide, don’t lift, push, don’t pull. Maintain good posture. Bend at the knees, not the waist. Eliminate unnecessary motions. Use both hands when possible while carrying. Adjust work-spaces such as raising a tabletop to eliminate awkward positions.
• Install long handles on faucets or doorknobs.
• Consider moving your bed to the first floor to eliminate stair climbing.
• Organize the kitchen for maximum efficiency. Place the most often used items on the lowest shelves. Make a cooking area having all pots and pans together close to the stove. Spices and utensils should also be as close to the cooking area as possible. Consult an occupational therapist to help personalize the ideas listed here and enlist a helper or two to rearrange your living environment.

Eliminate any Unnecessary Effort

• Sit rather than stand whenever possible, i.e.: when preparing food, washing dishes, when talking on the phone.
• When dressing, sit, have your clothes at arm’s length, dressing the lower parts of your body first as this requires the most energy expenditure. Bring your feet up to you rather than bending down to them. Work slowly and methodically, resting when needed. Buy clothes that are easy to care for and put on.
• Shower using a shower chair, remain sitting when shaving your legs instead of bending over, have a chair in the bathroom so you can sit while drying yourself.
• Use adaptive equipment that is appropriate to your situation, i.e.: book holder, a jar opener, a reacher, text to speech software or hand-free headset for your phone.
• Organize the method in which you work, repetition of the same methods will increase proficiency and save time and energy.
• Soak your dishes before washing, let them air dry or consider using paper products.
• Buy prepared foods and try to keep prepared healthy snacks available such as precooked hard-boiled eggs, cheese slices and fruit.
• Shopping can be an exhausting activity so try to find a grocery store that accepts phone orders and delivers. A few large grocery chains have online ordering and delivering. If you go shopping, use electric carts or wheelchairs, which most large grocery stores make available. Other items are available from catalogs by mail, phone or the Internet. Take advantage of these effective alternative ways of shopping. Think of how many stores you can visit without leaving your chair!

Plan Ahead

• Pre-plan your activities and try to make a daily or weekly schedule.
• Ask yourself a few questions: Is there too much to do on a single day? Are heavy tasks alternated with light ones? Are heavy tasks distributed throughout the week? Have I scheduled enough time to for activities with enough time between each one to rest? Rushing takes more energy!
• Make fewer trips around the house; if you have stairs, organize your day so you minimize the need to climb them.
• Cook in larger quantities and refrigerate or freeze extra portions.
• Work rest breaks into activities as often as possible. Take a break before you get tired.
• Try to plan some type of exercise into your weekly routine. Toned muscles require less energy to function.

Prioritize

• Eliminate or reduce tasks that aren’t that important you.
• Remember to delegate tasks to family or friends who offer to help.
• Consider hiring professionals, such as a cleaning service or lawn service, to cut down on your workload.
• Decide  what are the most important things in your life and spend your energy money on them.
• Always listen to your body, know your limits and don’t let yourself become overtired.

If you do overdo it, try not to be too hard on yourself. Walking the mito path is very challenging and learning how much activity is too much is sometimes determined by when we crash! The goal is to live a rich and full life with the least amount of mito crashes as possible.

What's New?

This time last year I was responding well to my Mito Cocktail. I had a real increase in energy and stamina. I suspect what happened with the Mito Cocktail is that my body just adjusted to it and it stopped working as well. 

That happens to everyone with almost all medications, even recreational drugs. I'm no longer taking the Idebeone. I tried it for three weeks and it didn't work for me. I had an increase in cramping, spasms and muscle pain, plus it upset my stomach. So two weeks ago I went back to my COQ10 and I feel like I'm still adjusting.

I continue to be less fearful than a year ago and am still rocking a bikini. I also take care of my "tasks of daily living" independently. I even made a quick store trip with my son yesterday, just the two of us. That felt really good.

As far as medications go, here's what I'm currently taking:

Prescriptions Taking

LevoTHYROxine 125 mcg AM

(Pregabalin) Lyrica 150 mg BID

(Duloxetine) Cymbalta 60 mg PM

(Lioresal) Baclofen 20 mg TID

Albuterol Inhaler PRN (apx 6 puffs spread out daily)

PRN

Acetaminophen 500mg +2 PRN

(Rizatriptan) Maxalt-MLT 10mg PRN

Albuterol Nebulizer (DME) PRN (not used yet)

5:1 (CBD:THC) Tincture or Edible PRN

Supplements

COQ10 300mg 5x a day (1,500mg total)

L-Arginine 500mg AM

Vit. D3 2,000IU AM

Wild Alaskan Fish Oil 1,400mg BID AM/PM

Biotin 1,000mcg AM

Magnesium Citrate 250mg BID AM/PM
Potassium 99mg BID AM/PM

MigreLief supplement BID AM/PM

B-2 400mg

Magnesium (citrate and oxide) 360mg

Feverfew (whole leaf & extract) 100mg

I have a fantastic A Team behind me now including multiple people who know about Metabolic/Mitochondrial Myopathy. My neuro muscular specialist just suggested I try epicatechin to see if it helps my muscles at all. She said there's some good results with it helping protect the heart of people with MD. I will give it a try since it's an over the counter supplement.

She also reminded me about the muscular benefits of Epsom Salt Baths. It's not easy for me to get in and out of the tub, but it is possible. I will try and add these to my regular routine as well. We have a big bag of it from Costco.

The biggest news for this month is I got adjustments for my big chair "Dory". I got a new seat, new headreast and (*insert drum roll here*) KNEE ABDUCTORS! That's a huge deal. No more leg straps for me!

Also fantastic is that she's on a bit of a tilt back so I don't slump over myself when my trunk muscles fatigue. Stamina is not my friend.

"But what about Plan Kick Ass?" 

I've integrated a lot of it into my daily life. I try and eat more fish and veg then I do land animals. I move as much as I can and in general make my health a priority. Of course I still have things that aren't the best for me, but I try and notice how food makes me feel after I eat and stick to the things that make me feel good.

Here's some things I'd like to change, work on for the future:

• Stretch twice daily
• Take Epsom Salt baths
• Try the epichatechin
• Explore CBD more
• Go back to smoothies every morning

Lastly what's new with me is that I'm trying some high CBD, low THC products to help with pain and muscle cramps/spasms issues. I don't like taking Acetaminophen for pain all of the time and I don't think it honestly helps that much anyway. It's hard on my liver and kidneys and can cause stomach irritation if I take it too often. I feel there's less of a physical risk to my health taking a more natural product. So far I have tried oils, tinctures and gummies. It's legal in my state and very available. I'm open to trying almost anything that could improve my quality of life.

So that's where I'm at medically right now. Taking things day by day and focusing on the positive. I'm keeping connected with my friends from my Muscular Dystrophy support group and family. That's always helpful for keeping my mood up. And my mom has been stuffing me full of delicious foods. I try and get outside to get some sunshine when I can. Now I'm off to make a smoothie!

Sex and Progressive Disability

It seems as if every article and blog on the internet that addresses sex and disability does so from the point of view that the person has always been the way that they are. I have found hardly any information in my scouring that talks about what happens when you have a progressive disability or illness. Which is very sad because it has a HUGE impact on your sex life.

My neurologist told me last week that my issue (COQ6 gene mutation that causes COQ10 deficiency that causes Metabolic Myopathy) is progressive and degenerative. It was something I suspected but it was still hard to hear. Although it did light a fire under my butt (pun intended) to try and find something that would help my sex life.

My husband is amazing and is always open to trying anything that might help me, even if it costs us money. I've tried a vibrator in the past, but I don't think it was strong enough for my muscles. We also have a "wedge pillow" that is amazing. I can't speak highly enough of support pillows with any kind of muscle condition and intimacy. So although I still was enjoying sex, I had been unable to have an orgasm for a long time.

One of my issues is muscle cramps and spasms that happen most of the time. My neurologist recommended I try CBD for it and said it would help. A friend of mine from my Muscular Dystrophy support group suggested I try a tincture. One trip to our local dispensary (it's legal in my State) and $80 later and I was equipped with something that has been helping me. I thought it might also just help my orgasms?

My husband and I made a trip out to a very female forward sex store called Good Vibrations. They helped me find a new vibrator that could be helpful, along with some other muscle support devices to try out. BINGO!!! A stronger, more adjustable, larger vibrator did the trick. My orgasm has changed a lot though and felt very different. But I was still happy to get there.

NEVER GIVE UP! My tenacity paid off once more. Don't be afraid to experiment and invest some money on your sexual pleasure. It's important and helpful for your mood.

(I'm not affiliated with any of the links and received no compensation for sharing them.)