Marking the Occasion

My mom asked me today how I feel when I look at old pictures of me using my wheelchair. Well... "old" being anything older than three months ago. It is an excellent question. I feel many things. Shock at how ill I was. Pride that I still fought to have a slice of rich life. Empathy for myself and what I went through. Sadness that I struggled so much. Fear about a relapse. Joy at being able bodied again. Many mixed emotions.

I said I felt that I barely registered COVID when it happened. I had already been traumatized about air born diseases after contracting tuberculosis. That was scary. But during COVID I was just struggling to bathe and get dressed. Worry about COVID was energy I didn't really have. I let others worry for me.

But now I am able bodied. And getting stronger every day.

I'm a huge "commemorator." I felt this need to commemorate this time in my life. 

I've always loved mermaids and felt that I secretly am one. I adore all water and was an absolute fish as a kid. I lived in the pool every single summer. So when I became disabled I would joke that it's just my body finally transforming into a real mermaid. So what better way to honor surviving the last few years?

I bought myself this sterling and aquamarine mermaid ring a few weeks ago off Etsy. I can't wait for it to come. I love that she's not naked with her titties hanging there. You'd be surprised how much mermaid stuff is tacky like that. I like that there's two. One for the past and one for the future. The mermaid I was and the mermaid I am yet to be. Stronger than ever.

Covid Three Years Later

My husband and I attended a live show yesterday. It was my first one indoors since COVID began three years ago. Officially COVID was declared a pandemic in March, 2020. But it began much earlier than that and was already thriving in many countries this time three years ago.

Fast forward to now. There have been three immunizations for three different mutations. We keep having new mutations however because of the lack of people willing to be immunized. Of course I have had all three the second that I could. I've also never contracted COVID (that I know of. I never tested positive.)

COVID is still very much alive and well but most of the "civilized" world has decided it is not. People are tired of wearing masks everywhere and tired of being told what to do. So everyone has just mutually agreed that it's not a threat anymore. Even though it is. 

The issue with that "solution" that I have is that society has then silently agreed to:

1) Keep mutating COVID into new forms requiring new vaccinations.

2) They are ok with old people dying horrible deaths (as the most at-risk population.)

3) They are ok with babies and young people dying horrible deaths.

4) They are ok with chronically ill people dying horrible deaths.

Yeah... I'm not ok with any of that.

Especially ME dying a horrible death (or anyone I love for that matter.)

There are millions of people with compromised immune systems and compromised lungs out there. Myself included. That's why when we went to the show yesterday both my husband and myself "masked up." And you know what? I wasn't at all surprised that we were in the vast minority who did so. I saw maybe 10 people out of the thousands that attended the packed show.

This included my husband's family. None of them wore a mask. 

I think that people believe vaccines make them "safe." Like a condom protects you from a pregnancy. It's about the same percentage I believe. A bit of "Welllll... it helps and it's better than nothing, but don't be too shocked if it fails." The "rubber vaccine" should be its new name. Hah!

That's the last big indoor event I'm attending for a while. Although I enjoyed it, it did make me nervous. I'll continue to vacillate between "I'm not doing anything indoors ever!" And "I have to just keep living my life." It's a very interesting time to be in. 

What Matters Most

4.25 Million people have died from COVID worldwide. I'm positive that it an under-reported number. 614,000 People have died of the virus in the USA. 668 People passed from COVID yesterday alone in the US. None of these numbers count people who died from suicide, violence or substances directly due to this pandemic either. 

I am one of the lucky few.

So... how do I want my life to be?

What kind of person am I?

How do I chose to live?

Kindness is a very important value to me.

Health for myself and those I love is also vital.

Making a contribution to my community and society in a positive way is also key.

Creativity and expression is a must. Even if it's just for me.

With that in mind there are a few changes I would like to make to my life.

1. Have family over to our house more often. Especially when we're done with all the remodeling we're in the middle of right now.
   
   
2. I'd still love to travel, experience new things and meet new people. AND the smaller I am the easier that will be too!
   
   
3. Writing a book is still high on my list
   
   
4. I'm going to devote more time to researching my disease. I'd like to meet more people with mitochondrial disease as well. 
   
   
5. It would be thrilling to meet more creative women and practice our craft together in person. Making new friends who share my passions and values would be most welcome in my life.
   
   
6. Letting old friends who don't share my values go.

What Comes Next?

Almost a month has gone by since my last post. Many things have changed and much has stayed the same.

I passed my licensure and am now a fully certified Psychotherapist. That's very exciting news. I passed on my first try despite the heat, a mask and a migraine. I felt and still feel a huge tidal wave of pride at that accomplishment. It also marks with a big period an enormous part of my life. Endless schooling, three degrees, 3,000 hours of practice, studying for millions of hours and now a framed certificate on my wall publicly declaring that "I DID IT!" 

What comes next?

That's the part that has changed very little.

I still can't function at all without my Botox shots for migraine every 3 months. Though by the end of month 2 it starts to wear off and then I'm a mess once more. Dizziness increases, pain, sound and light sensitivity, seeing things that aren't there, my memory gets even worse (which is really saying something!) You get the general idea.

Then there's the pain. The pain in my body is constant. I rarely take anything for it because I feel pain is the communicator. Sometimes that communicator is broken (like my migraines). But sometimes it's a valid message. I don't want to shut down that relay with my body just yet. 

But the number one ruler of my life is fatigue. When I become exhausted all systems stop. My memory, focus, ability to talk easily, train of thought, muscle strength, all go out the window. This happens daily, usually around 12-3PM. I rest and sleep and feel better when I get up. If I don't rest and sleep it gets worse till my muscles start to shake and spasm and I get cold sweats. 

When people say to me "Now that you have your license you can start seeing clients again!" I cringe. They have no concept of what goes on in my body. In their defense I also "fake normal" really well. "You can just see a few online" the friendly person might say. But that involves the ability to be there for the person 100% and many hours of record keeping, preparation, etc... I'm not just a face on a monitor. 

Therapy is out. 

So what comes next?

I'm essentially taking some time off to mull that over. I'm vaccinated and enjoying being social a little bit again. I'm looking forward to taking a few small road trips. You know... cutting myself a break!

For the future I'm considering a few ideas. Writing a mental health book is the first thing that comes to mind. Both an interventions book for clinicians and one for consumers. I like the idea of writing because I can do it anytime I feel up to it.

Right now I'm swimming often at my mother's pool. Trying to work out my CPAP machine. Attending appointments at my muscle clinic, my migraine neurologist and my regular doctor. Spending time gardening (when my body allows it), cooking (see previous comment) and hanging out with my ever-fun family.

We'll see what comes next.

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.

Nesting

August has been an interesting month. It started off fantastic with my husband finally taking some time off of work and us diving into our fun bedroom decorating project. But then the fires came to California and it looked and felt like the world was ending. 

The family had already been investing time into making our home even more special. We'd been tending our garden, caring for the ever growing collection of house plants and investing our "vacation/travel fund" into a bedroom spruce up instead. Not just any re-do though. Not your Better Homes and Gardens bedroom. We're turning our bedroom into a Disney Jungle Cruise (loosely) themed room. It's going to be amazing!

We've been doing a lot of art and fun craft projects to make it uniquely ours. Not only does it personalize the space, but it saves money too. 

So while it does indeed feel like the world might be ending, we can be sipping cocktails (and mocktails) in our tiki room, or snoozing under a canopy of "man eating jungle vines." A worthy investment to lift our spirits.

All of this may sound superficial, but mental health is just as important as physical health. Keeping busy with "nesting" is an instinct almost every living thing has.

I've also learned that I can have gratitude for what I have knowing how lucky I am while also having empathy for those who aren't as fortunate. Feelings are not exclusionary.