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.

Terrifying Side Effect

My health feels overwhelming most of the time. 

Yesterday I had a major episode that was truly terrifying. I had my annual flu shot in the morning. I've never had an issue with it ever in the past, nor with any other vaccination. Ever. Yesterday was a first. Three hours after my shot I felt myself getting weaker. By five I was terrified. I was home alone and my muscles were so weak I could barely work my phone or speak. I though about calling my mom over, but my husband was due to be home any second. I also thought about calling 911, but I didn't want the dogs upset. (Yes... even my dogs come before me.) 

Finally my husband came home. As soon as I started talking to him I started sobbing. I mean 'snot crying' big time. I could hardly get out what happened to me between the tears and muscle weakness. Somehow he understood. I asked him to make me a Gatorade. The last in the house. It has helped in the past. He then crawled into bed with me and comforted me. It was all very helpful. I decided I would wait and see if I got any worse and if I did, then I would go to the hospital. 

Fortunately I didn't get worse. After about 90 minutes after the Gatorade I even improved a little. The tide was being pulled back. I was so scared. To suddenly lose your muscle strength like you've been hit with a blow dart. It is a very horrific thing to experience. I haven't had that happen to me for about four years now. The last time I went to the hospital by ambulance. 

I still feel weak today. When I went to the hospital what made me better was a full IV fluid bag and antihistamines. Strange. My body is such a complex creature. When she's unhappy, she lets me know it with both barrels!

I've been very busy lately. Living my life to the fullest. Family, kids, the ballet, stand up, late nights, company, booze. Not sticking 100% to my short chain fatty acid diet. Working out extra hard, pushing myself over my limit. It's time to pull back and turtle up for a bit. Let my body calm down and recover.

A little taste of my busy life

Post Script - My muscle weakness got much worse after I wrote this. My neurologist had a nurse practitioner call in and check on me. I had sent them a message last night about what happened. She urged me to go to the ER to run labs and just double check that I hadn't had a stroke. 

After 3 hours there I had every reassurance that what I thought had happened was what happened and nothing else. No infection. No stroke. Nothing else. It was very scary though and I'm for sure skipping my flu vaccination next year. This morning I'm feeling much better. 

Keep Calm and Fight!

So the world imploded last week.

Again...

First Trump won the Presidency in 2017. We had him keeping the seat warm till 2021. Now we're in for him again. Both times he ran against women. The first time he lost the popular vote. Or as I like to think of it the "real" vote. The second time he won "for real" with the majority of America preferring a narcissistic dictator to a woman of color. Of course they did. No surprise there. Women of color are valued the least in this country.

Vice President Kamala Harris.

I really wish she was our new President.

I was crushed, then enraged. Disgusted with every single person who voted for him. I grieved for what could have been under a more liberal, collaborative leader. 

Now I'm just sick and tired of women being treated like trash. Of course there are other parts of the world that are much worse. But on average I do not feel like women are valued at all.

Like a phoenix I'm rising from despair into action. Women's causes are now my number one interest. I'm taking my time to consider where my help would be most impactful, but I am planning on actively working for the greater good of women. 

August 26,1920 Women are given the right to vote.
Not very long ago

Will that be a support group for disabled women? For mother's of special needs offspring? Volunteering at Planned Parenthood? Working for reproductive rights, equal pay and other women's causes? I'm not quite sure yet. My time is limited, so I want to make sure I'm making the greatest impact possible with what skills I have.

Maybe even just a women's only support group where we de-stress and share? A women's circle.

Hmmmm, that has potential.

Times and Tides

I have learned in my 51 years on this planet that if I pay close attention, nature is the best teacher of all. That's one of the things I love most about Polynesian culture. Although it's not the only culture that lives so close to the Earth, it's the main one that I know and admire. Living on a volcanic island, like Hawaii and Iceland, you can't help but live in sync with nature. You are hugely dependent on nature for your survival. Any second you could be wiped out by her wrath, or enormously rewarded. We've lost that connection in more urban environments. No matter how many parks and green belts there are.

Not the same as a park

One of the big lessons nature taught me is that no growth can occur without destruction. Usually complete and violent destruction. Mother Nature loves nothing more than a clean slate. I respect that hugely. I look back on my life and see my own biggest periods of growth occurring after total devastation.

The Hawaiians also know this, which is why they focus on the "now" so intensely. Everyone has heard of "island time" and "hang loose." To me those mean exactly what my mother practices and knows so well. "Life's too short and precious to rush through." It's very easy to get caught up in the pressures of everyone else around you and start rushing through everything, even when there's no need. Rushing to our cars from the store. Rushing through the store. Rushing to the store. What happens if we're late? Typically nothing awful. You're just a little late *but not by "Island Time!"

Hawaiians also take full advantage of all of nature's gifts. The original native diet was very high in fish and fruits. It wasn't until American's came to take over that we introduced Spam. Although the Japanese labor force that was imported in to work the pineapple fields can take the blame for rice. I felt like I had never eaten a banana before until I had an Apple Banana in Hawaii right off the tree. Here we shop at the grocery store, or if you're very lucky, the Farmer's Market. But we typically eat far from nature. 

I'm very guilty of this. Frozen pizza, macaroni and cheese, heck! Even just cheese and yogurt. All are heavily processed foods that are known to contribute to disease. Does that stop me? No. It's what I grew up with and what I love. Though culture can and does change. Again, nature taught me that nothing is permanent and everything changes all the time. Even when you can't see it. Seashores are being eroded. Soil shifted. Rocks worn away. Diamonds created from stardust. Humans from blobs of cells. 

There is nothing from nature on this truck

Every so often I feel like I wake up from a culture induced stupor and wake up to the tides of nature. Fall has historically been one of those times for me. The changes in the natural world are so profound at this time that I can't help but to take notice. This always has been a time of inward reflection for me. This fall I didn't like what I saw.

I saw myself self-sabotaging over and over and over again. Doing nothing to support my own health. And little that nurtures my mental well-being. I have been shoving down the anger and grief over the death of the main male figure in my life, my Grandfather, who passed violently three short months ago. I have been feeding myself to comfort mentally rather than feeding myself what I know I need physically. I have been taking great care of others and not so great care of myself. A tried and true pattern of mine. I put other's preferences ahead of my own and lose focus of my own path as it crosses with others.

I am painfully aware of how easy it would be for my to lose myself completely to my new family. Stop going to the gym and just focus on them. But I have goals and I need to re-focus right now.

My Goals (what I want to re-focus on)

1.  My health. Eating the foods I need to eat to be as strong and healthy as possible. High fiber whole foods that will product short-chain fatty acids in my gut microbiome. Not long. This also includes going to the gym at least three times a week to work on my strength and flexibility. 
   
   
   
2. My creativity. Setting aside time for writing, ceramics, drawing, painting, whatever I want to express what's inside me.
   
   
3. My emotions. Processing my feelings about the horrible death of my grandfather.
   
   
4. My empathy. Spending time with my son, my mother and my new family. Also in here I put completing my CEU's to maintain my MFT license.
   
   
5. Making Money. Selling our unwanted stuff on eBay and maybe starting a support group of some kind. Getting back to working one or two days a week.

To accomplish my goals I need to be committed. Dedication and focus is what I need right now. Because there will always be more laundry and I don't need mac n' cheese.

I rebuke you Satan! 

My Hindsight Is 20/20

When I first started this blog six years ago I was terrified. I felt like my whole body was failing on many levels all of a sudden and I didn't know why. Feeling like I had no control over what my body was doing was very scary. 

Looking back I can see little threads of struggles all through my life.

I was a very tired kid. I had serious sleeping disorders. Nocturnal panic attacks, sleep walking and talking. I fell asleep at school frequently only to be woken up by an annoyed teacher. I always had "growing pains" in my legs where my legs would just ache for no reason. My mom even took me to the pediatrician for pain in my legs. I remember it being dismissed as "growing pains" (which are not a "thing" anymore thank God.)

My back hurt almost all the time. When I would be roller-skating with my best friend (a favorite activity of mine) I would need to take breaks and she would rub my back for me. It was one of those things you don't know is abnormal because it's all you've ever known. Looking back now I see red flag after red flag that I had some kind of health issues happening.

As I grew so did my strange health symptoms. I had endometriosis so severe that I had five laparoscopic procedures to remove abnormal tissue by knife and laser. It grew on my bowels, bladder, intestines, uterus, ovaries, pretty much everywhere it wasn't supposed to be, causing me incredible amounts of pain. Now we know so much more about it and what a serious disease it is for women. But back then the male ER doctor just smirked at me insisting I had an abortion when I wasn't even sexually active. 

My thyroid failed, then my gallbladder. I had mysterious Fatty Liver Disease and just felt tired and drained all the time. I struggled to live a normal life and work 9-5. My physical stamina was never the best.

My one child was diagnosed with Autism very young. Researchers now know that women with autoimmune diseases are much more likely to have Autistic children. 

I had many moments before any official diagnosis or my brain tumor where I just felt like "I can't do this anymore. I can't go to this (class, job, meeting, coffee...) I'm just too exhausted." I'm not sure that's actually normal.

This was all before the TB. Before the craniotomy. Before I needed any mobility device. So was this just a sneaky genetic malfunction that has always been with me? Or did my propensity to health challenges hurtle me down a spiral of worsening issues? It's interesting to look back and follow the threads. Regardless of the causes, to me it looks like one massive web.