8 years and 4 months

It has been eight years and four months since I first officially reported having muscle weakness. July and August were rough. So rough that I haven’t blogged since July 16^th. I had my muscle neurology check in on August 27^th. Those happen four or two times a year with my muscular neurologist. My specialist. The captain of the “A Team.” (What I call my very long list of medical professionals.) She is part of the UC Davis PM&R Clinic. “Physical Medicine and Rehabilitation.” She sees patients with muscular disorders and diseases.

But I digress.

I saw her on August 27^th. I hadn’t been since December. Since then two things had worsened. My right ankle/Achilles and my breathing. I let her know in December and the appointment before that one that my breathing felt like it was becoming more of an issue. I could feel myself struggling most at night and in altitude change. Or pressure change (the weather or in the pool.) This time I really stressed that it was feeling worse and she had me evaluated by the departmental pulmonologist. It had been two years since I’d had a full evaluation.

Breaking out the ol' nebulizer

She found that my lung capacity and oxygen levels were still good. But my muscle strength (diaphragm muscles especially) had weakened substantially. They measured at about 85% worse than two years ago. It’s bad enough that she’s ordering a new sleep study for me and another “Cough Assist” machine. I hate that fucking thing.

Right after that appointment the air pressure shifted dramatically and I had gigantic issues breathing at night. I contemplated going to the ER, it was so bad. My mom bought me some wedge pillows that helped a lot. I slept very elevated and used my nebulizer machine twice a day. That kept me out of the hospital.

Hang in there girl!

I called and messaged the Pulmonologist to let her know I was struggling so bad and that it seemed connected to the air pressure shift. Her response was “Huh, that’s strange. I’ve never seen that before. I’ll let the doctor know. You already have your referral for the sleep clinic.” In short. “HANG IN THERE KITTY!” That felt very dismissive and shitty. And despite my multiple calls since, I’m still waiting on the sleep clinic to even schedule me for my sleep study.

Beautiful flowers from a friend

Worth living for

My ankle will require a custom made orthotic. An ankle brace since my ankle is unstable both ways and over-pronating. That means my Achilles keeps stretching out of place and re-injuring. Which is why it has hurt for almost a year now. Fuuuuuuuck… So a new custom ankle brace for that and new foot and leg brace for the drop foot (which I still have on the same leg.) Fortunately my left side is fine. Some good news.

Oh good Goddess
PANCAKES with my mom!
Worth living for
Absolutely

UC Davis is becoming shittier and shittier. The wait time for anything is 3-6 months. Next week I’m seeing the Immunologist. Something I’ve been trying to do for a year. I had to see my PCP twice, my muscular neurologist once and a Rheumatologist before they’d send me to him. What a huge mess. After that is the ENT. I’m seeing them for my continued right ear blockage that seems to be neurologically based. The nerve gets irritated and then my Eustachian tube blocks. Wheeeeeee…

Also coming up is my pain injection in my Achillies, followed closely by Botox round two. It took me eight months to get my Botox back. Jeeeeeesus H Christ…

On the good news side. My new migraine neurologist is someone I like and have seen before long ago. I’m seeing him in November. And my new anti-seizure medication (brivaracetam 25 mg tablet, commonly known as Briviact) seems to be working with few side effects. Dizziness and urinary retention only. I haven’t wanted to kill myself (yet) so I call that a win. Horraaayyyyyyy…

I’m displeased. Sad about how my body is taking a turn. I’m using my chair more and more despite going to the gym and trying to walk as much as I can. Everything seems to set my body off. I had a crown re-done at the dentist a week ago and have had nothing but pain and bruising since. The kind of pain that keeps me up at night. Most of the night.

But here’s some good things.

I always have a great time with my mom, John and my sisters. Max and Margo keep me smiling, laughing and company, even when I’m in bed. Ice cream Sundays and delicious sandwiches are still to be had. I have beautiful clothes to wear. I’ve seen some astonishing nature lately. Deer, a raven, a vulture eating road kill and a massive thresher shark breaching. The swimming pool feels amazing. I got to go to the beach the other week. Just hearing the waves and smelling the air was cathartic.

My drawing of the beach

My son loves me and gives me hugs. I have a good friend coming down to visit from Texas in September. I still beat my husband at games. Summer is almost over and I can smell autumn in the air. My favorite time of year. My 32^nd wedding anniversary is coming up. That seems hard to believe that we’ve been married for so long.

Saw some "Glossy Ibis" with my mama

I love seeing new things

Although it’s easy to feel angry and overwhelmed by my health and what I “can’t do.” There’s still plenty that I can do and that I GET TO DO. I can’t forget that.

 

 

 

 

From Electric Wheelchair to Electric Bike!

Seven months ago I was an electric wheelchair user. Any time I left my home I relied on my chair to be my legs.

Now after selling Pablo I'm in the market for an electric bike.

We went down to being a 1.5 car family. The 0.5 is my mom's Jeep that I can borrow any time I want.

But I don't like relying on other people. Even my mom. I want to be independent. I also always loved bike riding. 

An electric bike is the perfect solution for me. I can use power assist for hills or full electric if I get too pooped (like on my way home from the gym.)

These bikes don't come cheap, so it's a big investment in myself.

At first I thought I wanted a three wheel bike for sure. But after looking in person I'm not as convinced. They're harder to pedal (because of the extra weight), harder to turn and take up much more space to store. There are also much fewer to test ride.

Cargo bike?
Maybe.

A three wheel model that has potential.

The benefits of having three wheels are the added stability. After brain surgery and a muscle disease that means a lot. If I do go two wheels I want them to be big and fat! (Like meeeeeee.)

My husband found this site where you can 100% customize your eBike.

The artist in me is really in love.

We will be going camping with friends for the first time ever soon after my road trip return. I may wait till after that to decide. A sportier model would be able to come with us on such adventure. A big three wheeler would have to stay at home. I'm not buying a truck to carry my bike.

It all comes down to how will I use it the most.

• Tooling around town from the gym to the store
• Carrying the dogs out to local parks and for rides
• Camping and biking along oceans on adventures

I'm not totally positive yet.

Until I am I don't want to make such a big financial investment. In the meantime I'm having fun looking, learning and test riding.

honk honk! Move it cars!

A pricy cargo bike

Adventure List

Now that I have more energy and my mobility back I have a list of things I would like to do. 

• Go Roller Skating
• Camping
• Ocean Swimming
• Snorkeling
• Running on the Beach
• Walk Barefoot Through a Meadow
• Collect Seashells
• Hike Through the Woods
• Go to a Botanical Garden
• Travel More
• Become Proficient at Yoga
• Dance with Friends (doesn't have to be in public)
• Ride a Bike or Trike
• Put My Hands in a Waterfall
• Create More Art

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.

Showing Up

My Mom likes to say that "Life is all about showing up." To me what that means is I need to make the effort to put myself out there as much as I possibly can. As much as I physically can. 

"Chat" bike ride at night

Although life happens at home, in my pajamas, declining party invitations. It also happens at the party in my nice new dress. It happens when I say "Yes" and engage in life outside just as much as inside. 

Humans are social creatures. We need to be around other people. That's why COVID was so impossible for so many people. Isolation. Being chronically ill limits how much I can be out in the world. It also limits what I can still do since COVID is still very much alive and contagious.

Coffee with Mom in her festive home

Sometimes "showing up" can look like entering a poetry contest from home or encouraging someone on Instagram. Other times it can look like spending my Mom's birthday at the zoo or having coffee at her house. To me engaging is simply making an effort. Not letting my pain and illness take over me and keep me in solitude. 

Enjoying Zebra at the Zoo

Thanks to my family and friends I have near constant engagement and many ways in which to "show up."

Max cuddle

My New Hobby

 For the last four months my husband and I have been enjoying a new hobby. Pottery. At first I thought we could both learn how to turn clay on a pottery wheel. But after the second time trying I learned it just takes way too many muscles. So my husband has been on the wheel improving each and every time. Meanwhile, I have been working at the table doing "slab build." That pretty much means just working with my hands without any clay moving. 

It has been tremendous fun! Shockingly so. Even more fun is the fact that I'm not very good at it. I'm learning each and every time. I'm a very creative person and I'm used to being pretty good at every art that I try. But clay? That's a new one for me. My muscle weakness also makes it harder for me, but not so hard that I can't do it (unlike the wheel). 

It's incredibly rewarding to actually make things that are usable in a different way than just hanging on a wall. We're making all our Christmas gifts this year, 

A finished product takes two pottery sessions. I make it at the first one, then they fire it while we're away. At the second session I glaze it. They have about eight different colors to pick from. 

Next up? A new dish set and plant pots. 

Remember How to Play

Why so serious?

My son told me last night that he's taking a break from Facebook for his mental health. I applaud that level of self care. Another important thing to remember with all the stress people are under right now is how to play. Your inner child needs to be fed more than just ice cream and Taco Bell. They need to play. YOU need to play.

When was the last time you played?

Do you remember how to do it?

Play is vital to keeping your mood up, interacting with other people in positive ways and helpful for your relationships! Here's some ways that my family and I play. 

Go for a nature walk and touch everything.

Go to an art supply store and buy whatever looks fun. Even if you've never used it before. Make yourself an art basket and keep it out where you can see it. 

Do some doodles.

Take pictures of yourself making funny faces. You DO remember how to make a funny face... right?

Go to a thrift store and "rescue" a stuffed animal. Or better yet, find one in a dumpster! Take it to a public laundromat and clean it all up. Give it a second home and a new life.

Paint your toes the color of the rainbow and find some shoes that look like muppets. 

Make funny faces with your pet and take pictures. Or just rub and nuzzle on them.

Buy yourself a tiara. Because everything is better when you're the boss!

Stop and smell EVERY single freaking flower you come across. Even if it's just at the store.

Go look at some art. 

Blow some bubbles, or a pinwheel.

Do a puzzle. Especially with someone else.

Paint a picture of your pet (even if you think you're not any good).

Other ideas:

• Sing your favorite song really loud
• Make yourself cupcakes
• Go outside and play in the mud
• Make a fairy house out of stuff you find
• Start a new hobby (like air plants or Yoga)
• Taste something you've never had
• Have a pillow fight with your partner
• Try a new musical instrument
• Buy some sidewalk chalk and decorate your street
• Make a nature crown for your head
• Look for interesting bugs
• Learn to juggle tissues
• Teach yourself tarot or runes
• Make a big batch of something delicious and share it
• Dig out your old video games and have a retro game party (ditto for board games)

February - Where I'm at

I'm not kidding when I say I'm a full time patient. In one day I had three medical appointments. In one of them I learned the joys of what barium in all its forms tastes like for a Barium Swallow Test. 

(And why is the woman grinning madly? Why it's because she's trying not to vomit while holding massive amounts of barium in her mouth of course!)

Don't throw up or you'll have to do it all over again!

I also got to have this lidocaine nozzle shoved up my nose before a camera tube followed. Who knew they look at your throat through your nose? Now I sure do! (Kidding, he didn't "shove". He was very gentle and I'm being dramatic because I can.)

This was the petite nozzle that went up my nose. 

Only about 4 inches.

TAH DAH! My voice box and surrounding muscles. 

See the resemblance?

The tests all went well and they found some interesting things. Myopathy that affects my voice and muscles in the back of my throat that tire just like the ones in the rest of my body. They want me to see a speech therapist to get trained in some lung exercises to help protect me from pneumonia. I asked if I could just blow bubbles and pinwheels instead and the dude didn't even crack a smile. Doctors are just too serious sometimes!

So here's medically where I'm at:

• Referral for EMST (fancy for lung stuff) through a speech therapist
• Occupational therapy for my tweaked shoulder
• Occupational therapy to maintain muscle strength (even though strength isn't my issue, it's stamina)
• March 11th is my neurologist consultation for Botox for migraines (not the actual procedure. Hold your horses Ms. rushy rush! You have to be consulted first!)
• March 19th is when my wheelchair will finally get picked up for the modifications I've been trying to get since October (a higher headrest and knee abductors)
• March 22nd I check back in with my primary care doctor about everything
• Working on getting a nebulizer for home after needing urgent care and the hospital last year for breathing issues (mostly after travel)
• My teeth are clean, but I need a few procedures, so that continues in April

But what about FUN!? What's going on that's NOT related to medicine or illness?

• I'm enjoying the new show Lego Master with my honey
• My mom and I have a blast at our weekly Trader Joe's run
• I try and take Sweetie out every day, even if it's just around the block
• Daily I sit on my shower stool and pretend to be a mermaid while in the shower
• My husband and I are going to a Capitola beach house with friends in early April for the weekend
• My mom is taking myself and my son to Monterey during his spring break (one of our most favorite places in the world!)
• I just planted a little herb garden by my door
• The nature here is already springtime beautiful! I try and get out in it as often as possible
• I painted my toes rainbow and they make me incredibly happy

The importance of fun!

It's Halloween today and even though I'm not dressing up and going out I am still finding ways to have fun. If I were to dress up, this year I would go as Frida Kahlo. But not the super colorful one people usually dress as. Her more serious black mood like this:

I can relate to her disability and suffering but how she still struggled to express herself, her sexuality and her creativity. In fact, yesterday I bought two canvases and I want to get back into doing art. Any kind of art really. Just something fun to do to express myself and keep mentally active. 

Having fun and playing is a big deal in our house. We own a lot of games and many things others would consider "childish". Children's books, pinwheels, shadow puppets, Disney movies, stuffed animals, coloring books and crayons all have a happy home with us. And even though I don't use them all the time, just having them makes me smile. 

Even going to Target yesterday and picking out these bubbles to hand out to the little knee biters that will come knocking tonight was fun. I wheeled through the store picking out just the right thing. I like giving out toys instead of candy. Candy is gone in an instant, but a little something they can bring to school and share is better. 

No matter what the next day will bring I will ALWAYS find a way to have fun. (And like I suspected yesterday, I'm feeling much better today.)