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.

Support Group

 

I'm starting a support group in my community...

(Click to make bigger!)

For years now I've been trying to find the kind of support group I felt like I needed. Only to realize that it doesn't exist. At least not anywhere around me. Exhausted from looking I decided I'm starting one. Women only (because men tend to take up more space both verbally and emotionally.) 18+ So that we all have more in common.

It is my hope that we can form a community where we can share and support each other in our huge struggle. 

I am a licensed Marriage and Family Therapist, but this group is free. While you wait for our monthly gathering you can poke around my blog to learn more about me. Yes, Max will also be joining me. I look forward to meeting YOU!

“This event is not sponsored by Yolo County Library and the presence of this group in the meeting room does not constitute Yolo County Library’s endorsement of the policies or beliefs of this group.”

Surviving or Thriving

My husband and I have been checking in with each other asking if we are "surviving or thriving" on any given day. Recently I have learned that I answer "thriving" on days where I have been exceptionally social. This is shocking news to me.

I've always consider myself an introvert and that being with others drains me instead of charges my batteries (gives me spoons, fills my tank, gives me energy...) But what if I'm wrong? What if I actually thrive being with other people more often than I know?

Honestly I think like most things it depends on the people. If I'm with high energy people I thrive. If I'm with low energy people I might drain more quickly. Being empathetic I'm pretty sure this is the case. I mirror the energy of the people I'm with.

Recently I was able to spend time with some very high energy friends and I felt overwhelmed with joy. I savored every second of it.

I also got my nose re-pierced! So that's big news.

What Keeps Me Going

 

Did you know that the suicide rate of people with migraines is twice as high as the typical population? And that people with chronic migraines (what I have) are 42.9% more likely to kill themselves than people with episodic migraines? As someone who lives with never ending migraines these numbers don't surprise me. (read the full study here)

I have wished for death before and I'm sure it will come up again. But I would never ever act on it. Despite the constant pain, vertigo, and insane impact on me. And it is INSANE! There is no better word. Despite all of that, what keeps me going? What keeps me here?

Of course Love is #1. Especially love for my wonderful, amazing, fantastic family. They keep me laughing, keep me positive and try to help me as much as they can. I also think they'd all be screwed without me.

Shockingly my doctors would have to be #2. I know many people don't have that luxury of a fantastic medical team. Although they take a lot of time and effort on my end, they also provide me with a lot of relief and answers. I wouldn't have known that I was suffering major migraines without the Neurologist and ENT stepping in and educating me. I also would never have known to try Botox, the one thing that has consistently helped me.

Here are a few other things that not only keep me from killing myself, but make me smile and help me to thrive.

My beautiful garden that I created with my husband.

Silly, fun games that we play together.

We used to LOVE playing all kinds of games and puzzles, but when my Botox has worn off and I'm feeling "like garbage" (like now), these little iPhone games are about all I can manage. I love that we do them together.

Getting out of the house and into nature.

Any kind of nature! I can't drive, but I can wheel my chair around my small town. I can also go to and from my Mama's home. It's great to get out on my own and it gives me a feeling of autonomy, which is vital.

It's important for me to feel in charge of my body as much as I can. Maybe that's why I'm always cutting and coloring my hair.

All of these and millions of other tiny things are why I'm here today. Still fighting through the quicksand of symptoms. Of course a big sleep and some movies in bed now and again never hurt either.

And of course the...

Safety First

 

My motto for 2021 is going to be "SAFETY FIRST." And I'm going to start by postponing my licensure exam. My Mom and I had a good talk yesterday and she pointed out that with the COVID mutation in California and me being so high risk, it might be wiser to postpone. I completely agree.

Aside from risking death by taking a four hour test in a tiny, window-less room, my migraines have been awful. I'm not talking about head pain, although that happens sometimes too. I'm talking about being very dizzy, exhausted (not just fatigued) and my eyes being unable to focus. 

Luckily I have my every three month appointment with my migraine neurologist this Friday. But I'd like to get that more under control (if I can) before taking my big test. 

So this year I will go slow (I tend to be a big rusher) and take my safety seriously. I will advocate for myself and share more openly what's going on with my body. People only know what you tell them and I tend to not tell people much. Even those closest to me. 

I will also let others help keep me safe. That's a big one! 

Safety first.

Everything else second.

Processing Grief

I lost a lot when I became disabled. 

A big part of my identity was wrapped up in my job. No... my career. It felt like I had just barely scratched the surface of a huge part of my life when everything was turned upside down. First by my muscle disease that cause my energy and mobility issues, then again by my brain tumor that left me with potentially life long side effects.

I am very resilient and landed quickly on my feet. I also have fantastic family support. However I don't think I entirely processed what had happened. I feel like I was just taking it one day at a time in survival mode going from one medical appointment to the next. My identity as a helper of others had been turned around completely and now I was the one in need of help. 

I realize now that the dust has settled a bit (and even though that we're still in a global pandemic) I'm finally processing what happened to me. It was very shocking, completely life changing and horrible. Now I'm having to grow my other identities (and dust off old ones, like being an artist) to rebuild myself. 

A Sharpie drawing I did for my Mama

One thing that hit me hard this weekend was that I had been feeling entirely unattractive. My sexuality had been smashed along with my confidence. Not very long ago I was a full time wage earner, busy but invigorated. Now I feel like a "fat, old crippled lady." (My words)

Of course one fix is slow. Weight loss (which I REALLY need to take more seriously!) The other is my sexual confidence. When I look good, I feel good. But let me back up.

For the last 7 years (since I turned 40) I have flirted with my "natural" hair color. I had been a life long dye addict and was curious what my real hair color looked like. So began a very long repetitive process of growing my hair out, coloring it, then whacking it short to go back to my natural color. After my brain tumor I tried out Henna and shunned the drug store box because of the chemicals. But that was a long process that was also very messy.

Well, this weekend I decided to color my hair again. Not henna, but not the drugstore box either. I went with a natural botanical brand of permanent dye and I picked "Licorice." I wanted a black vixen look like Elizabeth Taylor. 

My Mama took me to our local co-op and they had just what I was looking for. Then she colored it for me at her casa. I actually really love it and do feel much sexier and confident in my looks. It's silly how such a little thing can help me mentally, but it did. 

For me this was less about dying my hair and more about regaining some much needed body autonomy. I often feel like my body runs the show and I'm just along for the ride. This time I took the (black) reigns and got some control back. I also happen to think it looks great, which helps my self esteem. All that for just $18. 

I know I'll continue to process and grieve for what I lost, while being aware the whole time of how very lucky I am. My feelings aren't exclusive and I give myself full permission to feel both.