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.