Checking In With Myself

2025 Has been as difficult for me as 2020 emotionally. This time in 2020 the COVID pandemic was really serious. Things were shutting down and people were told to stay at home unless you really had to go out. Now in 2025 everything is a big scary mess politically.

Undocumented people are hiding out while ICE is on the hunt to deport them. Or worse, hold them in Guantanamo prison. Women, people of color, disabled people, LGBT people are all targets by politicians. Thousands and thousands of important government workers have lost their jobs because of the whim of mad men with power. Much needed services are being cut right and left. 

I feel anxious and depressed. I haven't been sleeping well and I feel exhausted pretty constantly.

Personally these changes are affecting me very little. Like the lock down of 2020. But since I'm a caring person and I see the impact it has on people I love (and people I don't know,) it is affecting me in a major way.

I have to remind myself of all the good things there are constantly. Like...

• My family
• My puppies
• The support group I just started for women
• My beautiful house
• My many friends
• My lovely town
• Nature
• That I can walk a block without my chair still
• Art and cultural experiences still happening
• Good TV & movies
• My soft bed to rest on any time I need it (which is often)
• Pottery

It's already very much springtime here. That also helps me focus on good things. It's a "hopeful" time in the season wheel. 

Possible Answers

Yesterday my doctor let me know that my latest genetic testing came back with something. She said I have a mutation on my HADHA gene, but that I'm just a carrier. She thinks that I'm a "symptomatic carrier" (who knew there was such a thing!?)

The treatment for this disorder is to not eat anything that's a "long chain fatty acid" as my body possibly can't process it. And don't fast.

(Click to see images bigger)

I felt very happy to possibly have some answers. We knew it was a Mitochondrial disorder, but not particularly which one other than the COQ10 processing gene being mutated. She said "This is the first test to come back with a definitive mitochondrial link." A missing piece of the puzzle being clicked into place.

So with that news and my wanting to lose weight anyway my eating is about to undergo a huge change.

I did a lot of research and this is what I found out. I really wish there was a "Short chain fatty acid cookbook." Sadly people don't eat like that. Basically a Vegan diet without soy is the best. Super lean meat seems ok. Not for all the time but occasionally.

I used to be Vegan years ago. I remember being hungry a lot and missing burgers. Ha ha. But ethically it felt really good.

There are a lot of gourmet beans on the market. I can splurge on those. Same with rice. So many kinds to chose from. Summer is the perfect time for lovely fruits and veg. I'm lucking I didn't find this out in the dead of winter.

My hope is that I can halt my disease or even reverse some of it. I barely dare to let myself dream of a healthy normal life full of nature hikes and sex. In no particular order.

(Thanks Mom for the wonderful collage!)

Fatigue Rescue?

I'm still recovering from a recent bladder infection. Those strike me from time to time and are common with wheelchair users, especially women. I have an issue with my bladder muscles not wanting to let go when I... um... GO. It's called "retention" and that also puts me at a higher risk for infection. Hey... Aren't those tulips beautiful! I thought we could all look at something pretty while talking about bodily functions.

When I'm sick my afternoon "naps" (or "curse" as I really think of it) eat up more and more of my day. Makes sense. We all need rest when we don't feel well, but I end up sleeping my life away. 

I'm excited at the prospect of something new that might help me. Epicatechin. As I said before my neurologist recommended I give it a try. It's an over the counter supplement derived from chocolate, so why not?

This is what I went with.I've had three doses now and honestly can feel a difference. I took my first dose last night and indeed it did keep me awake! I took another dose this morning with a banana and another with lunch. I feel much less tired than I normally do at this time of day. Like how I used to feel if I ate some chocolate covered espresso beans. The thought of having found something that can possibly wipe out my 2-4hr nap every day for $38.95 a month makes me excited. I hope, hope, hope this stuff really does help and I don't just acclimate to it. 

Meet Pablo

Four days ago we pulled the trigger and bought a wheelchair van. Not just any wheelchair van though. This thing is a fricken rocket ship! I'd like you to meet... Pablo!

Pablo is a 2017 Chrysler Pacifica Touring Limited Plus with only 4,500 miles. He comes with a Braun electric fold out ramp, light sand colored leather seats that are heated, heated steering wheel, automatic lowering capabilities, back up camera, satellite navigation system, blu ray players front and back and (my husband's favorite feature) climate control for each section of the car front and back. That means I can have my side at 60 and he can have his side at 80. Win-win. Also our 6'4 son finally has plenty of leg room in the back seat. "And I even like the color" (Indiana Jones joke).

We'd been looking and thinking about a van for almost six months. There was a lot to learn and next to our house it was the biggest purchase we'd ever made. 

There are plenty of disabled people who live out their lives without a wheelchair van, so why did I feel like I NEEDED one? I am a tall, large lady. I have a tall, large wheelchair that is built to accommodate me. Yes, I also have a travel wheelchair, but it gets uncomfortable quickly. And given I'm already in constant pain it is important to be to be as comfortable as I can (enter the seat heaters). My big wheelchair makes me much more comfortable and I can't use it without a van or a bus. The bus doesn't go everywhere I need/want to go when I want to go there. My town is small and I can go out in just my chair a lot of the time, but not everywhere and only when the weather is good.

Also, my husband and I enjoy going on adventures. I'm hoping in the future more of those adventures can include road trips. There may come a time where I am only able to transfer in and out of my chair minimally and not walk much at all. I like being prepared and not having things like that sneak up on me. In Pablo we can keep the adventures coming for years and years no mater my mobility status. Even if I'm completely immobile actually, which is really fantastic!

And yes, a lot of disabled people don't have a van, but they also don't have anyone to drive it for them. In fact a lot of them end up becoming "house bound" which is a horrible, but understandable situation. Options outside of your own van really stink and aren't free (much to able bodied people's shock). And even being driven around can be exhausting. So a lot of the time people just end up staying home. 

No matter how severe my mobility issues get I refuse to have that happen to me. I will nap when I need to, sure! But I will get out and be a part of the world and let the world be a part of me. 

"Minnie" The Meningioma

I haven't posted in a while. I've been struggling to keep working as best as I can, sharing the news of the brain tumor with family and friends, juggling doctor messages and phone calls, laundry, being supportive of my son (who quit his job of 5 years the day I found out I had a brain tumor), enjoying life and distracting myself, processing my feelings and sleeping as much as humanly possible.

-GASP-

Yes, that tightness in your chest as you read that list is exactly what life has been like these past few days. But there are bright sides a-plenty!

1) The neurologists have decided I have a single tumor. I've decided to name her "Minnie." She's under 3cm big and is in my Left Temporal Lobe.

That's the green area.

2) Family has been super understanding (and of course shocked.) We're having a massive outpouring of support and specific offers of help. That has been amazing and made me feel very loved and much less worried.

3) I live in a big town with excellent health care. From the time of diagnosis to the time I'll meet with my neurosurgeon to go over a treatment plan will be less than 2 weeks. 

4) The neurosurgeon I'm seeing specialized in non-invasive surgery on that specific part of the brain.

5) My husband and son have been taking great care of me. 

6) I have the ultimate excuse for anything. Words that have left my mouth recently include "If you don't buy me that fluffy pillow I'll tell the checkout person that I have a brain tumor and you wouldn't spend $14.95 to make me happy." And of course the classic Arnold Schwarzenegger classic throwback quote "It IS a tumah." 

7) My mom sent me flowers AND a fun Halloween wreath. It's never too early for Halloween.

8) Even my dog feels bad for me.

 9) I get to sleep a lot and not feel bad about it.

10) I haven't had any seizures (a common symptom of brain tumors.)

Always look on the bright 

side of life!

A Spoonful of Hope

Spoons come and they go. They are coveted and fleeting. I never have as many as I wish I had and I struggle to use what I do have in a way that enriches myself and those I love. I ask myself all the time now "does this matter? Is it important? If I can't answer "YES!" Then I really can't afford to spend a spoon on it. Sometimes even if it is important, I just don't have any spoons left.

This weekend was very full. It was my sister-in-law's 50th birthday party and Father's Day. I knew it was going to be busy, full and stacked high with importance. I tried my best to rest up and plan my spoons as best I could. But the tricky thing about chronic illness is that spoons don't work that way. You can't stockpile them and save them for really important moments. Even though I try.

Spoons are like most things in nature. Fleeting and unpredictable. Saturday was good. I tried to not "over do it" at the party so that I'd have "plenty of spoons left for Father's Day." Forgetting that it doesn't always work that way. So Sunday came and I was wiped. Not enough spoons to celebrate it "the way I thought it should be. The way I really wanted it to be. The way I thought my husband deserved." Of course this all led to me feeling "not good enough, frustrated, upset" and even more exhausted today (despite my wonderful man literally taking me home and sticking me in pajamas after I just couldn't be out anymore.)

Despite my best efforts I let "should" take over my "can." I stubbornly refused to listen to my body till I was on the verge of tears. And when I felt like I was "ruining my husband's day" he just gently assured me that I did no such thing and that he was very glad that I told him I had to go home and couldn't be out anymore.

Nature teaches me to listen and watch. To have awe for the things I can do and patience for the things I can't do. To savor moments as they pass because (like spoons) anything worth treasuring will for sure be temporary. After all, everything is temporary. 

Even though I'm exhausted today, I'm hopeful. My doctor got me a new rheumatologist and I'm seeing him a month. This is the first time a specialist got me in to see them in less than 3 months. I'm grateful to be expedited. 

My upcoming "tour of immunology" looks like this:

This Thursday = full spine and neck MRI (it also happens to be Summer Solstice)

June 27th = new neurologist for my neuropathy

June 29th = my 3rd physical therapy appointment

July 13th = back to my primary care doctor for a check in

July 19th = first appointment with my new rheumatologist

When my physical health is compromised it's easy for my mental health to try and follow. A helpful trick is to list 3 things that I'm grateful for each day. So here's my 3 things for today:

1) My husband, his support and love. He helps me take care of myself and makes me smile.

2) My dogs. My little one always know when I need some rest and she loves joining me in bed.

3) "I Love Lucy" - one of my favorite shows. Laughter is great medicine.

(And one to grow on: That I have health insurance! Always grateful for that.)