Disease Management

There are many ways that I have learned to manage my disease over the years. Online resources have been hugely helpful. Back when I was on Facebook, belonging to a support group there led to some helpful suggestions.

This website has also been a fantastic place to gain insight and knowledge, even on topics like sex as a person with Mitochondrial disease. My Mito.org

Of course my mobility tools have been key. The unpredictability of this disorder can cause me a lot of anxiety. I don't know how long I'll be able to stand or walk on any given day. Keeping tools in the car makes that anxiety much less and sets me up for a successful outing or vacation. 

The biggest way I manage my disease is with medication, supplements and rest. Electrolytes too. I used to try to push myself through a day without rest, only to find I'm then over-tired at night and have a lot of trouble sleeping. If I take the time to rest I have a much better evening and better quality sleep at night. Strange, I know.

My medication is pretty dialed in now. It has been for over a year. My migraine management is the only thing that changes occasionally. 

Of course there are other things that "help." Like making meals simple. I typically just have a protein bar for breakfast. Even though my husband says that's not a breakfast, it's a snack. My favorite go-to dinner is a chopped salad kit (easier to eat than a normal salad) with faux buffalo chicken on top. 

Keeping positive and managing my mood is important as well. Talking with my husband and other family or close friends is therapeutic. I don't keep things bottled up anymore. Managing my stress is also helpful. 

Attending regular appointments to measure things like my breathing, heart and neurological symptoms is a must. I have from two to four appointments with my muscular neurologist a year. Four with my migraine neurologist (though I'm in the process of seeing a new person, so there's been a massive delay with my next appointment.) I see my primary care about three times a year for various things. Then usually some kind of specialist a few times in the year. A dermatologist or gastroenterologist. Urgent care is for things like I can't get my "bad ear" unplugged and it's starting to hurt, or a I have a UTI (happens about twice a year.)

Honestly just knowing what to expect and why something is happening to me has been incredibly helpful. Like the last time I went to the ER after my flu vaccination. Now I know if that happens again what it is, what to do and what to expect. I won't just be crying my eyes out scared to death.

Managing any disease is very complicated and time consuming. All consuming really. Now I need a rest. 

SLOW THE F*%& DOWN!

My mom says a lot of very true, on-point things. One of the things she is always telling me (has always told me) is to SLOW DOWN! I rush through everything. Even getting out of the car. She laughed the other day and said I'm just like the dogs (or are they just like me?) Always ready to jump out of the car before the brake is even on.

In my efforts to go slow I made a few changes.

I love the smell and warm glow of candles.

One has been reading at night rather than being on my phone. I'm not 100% perfect, but it has been really wonderful. I'm enjoying large print saucy reads and sleeping much better because of it. 

Total smut. But oh so fun!

Another change I made is switching from my Nespresso pods every morning to slow drip coffee. I read online someone doing this in an effort to have a slower morning. I thought it made good financial sense as well.

I bought this little 5 cup machine on eBay.

The other thing I've been doing for a while now is turning on the live feed from one of my favorite places in the world... Monterey Bay. I bet you thought I was going to say Hawaii? Well, that's number 2. But to see the otters and seals in real time. That stormy sea so alive. The people-less beaches. Well, it's a magical way to start the day. I pretend it's my window as I watch.

After my slow coffee by the bay I walk the dogs (if I have the energy.) And that's my easy morning. I know what a luxury it is to be able to indulge like this. I remember hitting the ground running when I worked full time. Then "luxury" time was my commute when I sang out loud in my car or listened to the news. Yeah... this is better.

Max, Margo and Mom. Living our best lives.

Expectations

I feel strongly that expectations are the tool of the devil. And yet I fall prey to them constantly. My husband and I just went away for a seven day vacation to Oahu Hawaii. And yes, I had expectations. 

I got tired, but still wanted to be in the ocean. Our hotel had free floaties for use, so I grabbed one. Just like the shark in my tattoo. Good choice.

I (foolishly) expected I could make it through two major airports with just my rollator and leg brace. I expected to be able to walk through a large museum with just my rollator. I expected to be able to do a 1/2 mile walk, swim in a waterfall and then walk back the 1/2 mile.

One of the few nights I wore makeup.

Where did these expectations come from? I believe it's from my own internalized ableism. Seeing medical equipment as "lazy" or "not pushing myself." I mean, I can walk, right? Well, that's a loaded question. I can walk, just not as far as I thought.

Too tired for makeup. Enjoying a delicious "mocktail."

I also learned that staying in a hotel is very different then staying at an Air B&B. There's the walk down the hall to the elevator, out the elevator to the breakfast buffet, back down the hall to the elevator, down another hall, to your room. That's a TON of walking and we haven't even really started our day yet. It took a toll on me fast.

I WAS good about letting myself rest as much as I needed.

This was my takeaway:

• Always stay in an ADA room if staying in a hotel. I need a shower stool.
• Always bring my travel electric wheelchair on vacation. I never know how far I may need to walk or how long I'll be standing.
• Energy conservation and naps are my friends.
• Expect I'll get "travelers stomach" and start on the daily pepto right away.
• An Air B&B has it's advantages. Like a short walk to the car and laundry facilities.
• Be kind to myself. Don't compare myself to others or even to what I used to do. 
• Be able to pivot to a DME anytime I need it. Don't try and "push through."

Addicted

I've recently been trying to learn as much as I can about my disease. Science is an ever changing, ever evolving beast. Especially when it comes to mitochondrial functioning and its role in multiple disorders.

One thing that stood out to me was the emphasis on sleep. How getting a good night's sleep is vital to good immunity and mitochondrial health. To say I don't get good sleep is an understatement. But that's in big part due to my phone. It is glued to my hand from the time I hit the sheets till around 2AM. Not healthy at all.

She doesn't look like a siren, but she is!

So last night I decided I'm changing that bad habit. I made my bed all nice, turned off all of the lights. Even my little nightlight and closed my eyes to sleep.

The urge to pick up my phone was insane. Partly due to my ADD brain wanting to look things up, add something to my Target cart, or check in with people I don't even know. Damn. I am completely addicted and I didn't even realize it.

"You knowwwww you want to shop. I bet someone is having a saaaaaaale"

It felt exactly like when I left Facebook for good about eight years ago now. I deleted my account and that was that. I didn't notice how much it had tentacled into every facet of my life until I quit cold turkey. I felt a physical pull to get back on it that was terrifying. I had been so completely addicted to it and I didn't even know it.

The fact that last night was so incredibly hard for me and that I felt that same magnetic pull to get on my phone just validated that I did the right thing. And just like Facebook, I didn't realize that I was addicted. I thought it was a preference or something I enjoyed. Not that I would feel the loss like a tooth pulled.

"I bet that comment you left is up to 5K likes now. What's your friend in Australia doing? I bet she's up."

I stayed off of it and fell asleep after a restless 30-45 minutes. Not bad. And I slept very well. Hmmmm. Coincidence? 

Oh yes. I also read a real book for the first time in ages. Bridgerton. The first one. Saucy. I felt like someone from Little House on the Prairie. Laying in bed reading. Wow! What a novel idea. Something I did all the time before the iPhone. 

Substance

I watched the bizarre movie The Substance yesterday. Although I can say I absolutely hated the ending, I did like the political commentaries that it brough to light. 

The beautiful Demi Moore and very young Sarah Margaret Qualley in The Substance.

The invisibility of women as we age (a good thing in my opinion.) The pressure on women to keep looking as young as possible. The self hatred that our beauty based culture can inflict on women. The disgusting men everywhere, seemingly endless amounts of them, who objectify women. "Beautiful girls smile" leers one man to a young girl, trying to get her to smile. An experience I had in my youth more than once.

A powerful scene where Demi Moore wipes away the makeup she just spackled on.

I enjoyed how powerful and decisive the main character became as she aged. No spoilers here, but the movie dug through the old myth of the maiden, the mother and the crone in a unique way. 

As a crone myself I found that very empowering. To own your "crone-ness" and to hell with everything and everyone else. Men don't like us because we now know all their tricks. How vapid and lurid most of them are. Not all men of course, but that's the general vibe honestly. And when a man's partner turns into a crone I think he becomes a bit fearful. Not a bad thing. Keeps him on his toes.

Disability is another challenge that makes one invisible. Although those who do see us are shockingly helpful and friendly. I realized the other day as I used my wheelchair how much people try and go out of their way to be friendly to me. Not when I use my rollator strangely enough. Then maybe I'm just an "old woman" instead of a "disabled woman?" It feels strange to transition between these worlds at will. 

I'll be honest. I do miss my grey hair. I feel ready to embrace my crone-ness and start kicking some butt. 

Another eye infection

AGGGGGG!!!!

I woke up Friday morning with another small stye on my left eye. This time on the upper lid. I already had a televisit with my doctor scheduled to get some more Diamox for our upcoming vacation. So I let her know that I'm having recurring stye issues. She ordered me some prescription eye ointment. 

Two days later and it was looking much worse. So I did a Teledoc visit and he prescribed me some oral antibiotics. This morning it looked even worse.

I know I can be impatient with my body, but I'm really expecting it to look a little bit better by now. 

I can feel the swelling pressing on my sinuses and the back of my throat. The ear, eye, nose and throat really are connected. You have but to experience an issue with one to feel it in all the others. Luckily my ear is fine. Hahaha.

I've been doing hot patches, cold patches, gentle wash in the shower. Everything I can think of. Drinking lots of liquids, taking Ibuprophen for the pain. At least today it feels a bit less painful, even if the swelling is worse.

Since my last stye I have been:

• Changing my pillow cases weekly
• Not rubbing my face on my dog
• Washing my hands any time I touch my face (that I know of?)
• Washing my eyelids gently in the shower with baby shampoo
• Using clean towels every time on my face

I honestly can't think of what to do more? I just need to be super careful I guess. I'm suspecting it's wearing my contacts that could be a trigger. But my hands are always clean when I put them in or take them out. Maybe I'll start to wear them only on special occasions?

My poor hysterical body.

Any time there's an infection or a reaction my muscles also shut down. I am very physically weak right now. I'm also exhausted. So... tired... So I'm spending a lot of time resting. But I'm not convinced that laying flat down is what's best for my eye. It feels like everything needs gravity to drain?

What a mess I am.

Escape

Ever since I can remember I fantasized about running away. When I was little it was the classic "put all my shit into a knapsack and take off with a sandwich" type daydream. As an adult it become "don't show up to work, but keep on driving till I hit Disneyland." Now days it has turned into "keep driving till you hit Canada or Mexico."

I hate what the United States has become. We are an oppressed nation ruled by a nazi who is stripping away women's rights as fast as I can blink. Although we started wheeling that way long before the human cheeto was sworn in. Roe vs Wade was overturned right under a Democratic president's nose. And a female VP I might add. 

Women are second class citizens here. Of course I want to run away. I'm guessing most women with a half a brain are currently daydreaming about it if not actively planning it. 

I used to think about having a precious little beach house in Monterey, CA. One of my favorite places. I love the unique wildlife there and the weather. Then later it turned to thoughts of Hawaii. Having a cottage tucked in the rainforest with wild geckos climbing my walls. Steps from the beach of course where I could snorkel every day.

Now I just think about anywhere but here.

My husband doesn't get it. Never did. He's incredibly sensible, rooted, grounded, determined, practical and let's face it. An upper class white man who works a corporate job. The US is made for him and men like him. Men who just keep their nose to the grindstone for the sake of their family. Who have a beefy 401K because they planned ahead for retirement. And lucky for me, because I am not and have never been that type of person. I think of myself as a kite and he's the little boy holding my string. Without him I would have been sucked up by a storm or eaten by a tree for sure. 

But man do I like to soar. And from up here I can see the whole world, not just our little patch of sky.