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.

Finding My Way

 

At 48 years old I feel like I'm finally finding my way. The way to really care for myself. With the same deep passion that I care for my family that I love so much.

CARE is such a lovely word. I sign off all my correspondence with "Take Care." I say that because it's important to me that everyone takes care of themselves. It is true what they say that you can't take care of anyone else if you don't take care of yourself first. Although I believe that you CAN take care of others, it's just not as healthy for you or the people you love. Putting yourself first is actually an act of love for others. This is something I'm just coming to realize.

Showing I care about myself through food choices.

I have always been a giver to others. Not materialistically, but emotionally and with my time and energy. As I aged I learned that it's important to say "no" to some people and some obligations. I thought that was all I needed to be mentally and physically healthy. Well, that and a Starbucks with a pedicure once in a while.

The older I get (and wiser I hope) the more I realize there's much much more to caring for yourself than sweet coffee and paying people to rub your feet. There's...

• Thoughts about myself, my body and my actions.
• Self talk. Am I being kind to myself?
• What I am choosing to put in and on my body.
• Am I committing self harm with my eating and lifestyle choices?
• How I spend my time.
• Am I connecting with people who make me more?
• My goals and dreams for myself.

Each of these can be a gateway to either self care or self harm. In the past, I don't think I was always choosing the CARE way. 

Some things I am committed to working on and changing are...

• Going down to a healthier weight for my body.
• Moving my body more through stretching, swimming and using my stationary bike pedals.
• Eating "good for me" foods that I would have skipped over in the past for tastier options.
• Ditching the chemicals on my body (hair dye, makeup, deodorant.)
• Setting new goals for myself.
• Exploring my new identity as a disabled person unable to work.
• Playing with my creative side.
• Relishing time in nature.

Caring for myself more may mean caring about other things less. Things like youth culture, other people's opinion, things I cannot control, other people's choices... Because caring to me is also really all about choices. Picking and choosing what I do, what I say, who I spend time with, how I feed myself. It's all one small choice at a time. 

How I imaging me and my friends in 20 more years.

Life is very short and I want to make sure I enjoy my ride as much as I can. That means being in the best health possible, as strong as possible (both mentally and physically) and not wasting time on things that don't matter. It's up to me what kind of life I create for myself. And I find it worth the work.

Migraine Torment

I am still waiting for my Botox and to meet my new neurologist while my wonderful, usual one is on maternity leave. I will meet him and get my new shots in 10 days. Not that I'm counting. At least he finally got back to me (after an intervention by my primary doctor) and prescribed me something new to try and help in the meantime. That only took three weeks to get him to do.

My migraines are tormenting me. It feels like someone put me on a copy machine and made so many copies of my brain that now the ink is running out. I feel un-real. Not all here. Like I slipped between two realities. One of pain, dizziness, distractions and the real one. 

Conversations are hard to follow. I feel like I'm just a shadow of myself. A bad copy of who I should be. Quiet and then garbled. I call things and people by the wrong name. It takes a long time to say what I mean. It all feels awful.

I think that's one of the main reasons I tend to over eat. It grounds me. Gives me instant pleasure and makes me feel more... me! When I'm hungry that faded feeling only intensifies till I hit a point of not caring. Then it's actually challenging for me to eat.

Caring about things in my life (other than the people I love) is hard right now. The migraine just erases me bit by bit. 

I can't wait to get my Botox and start to feel like myself, even if it's only a minor improvement. Anything is better than this.

My Very Best Self

 

One of the things I love about myself is my ability to do absolutely anything I put my mind to. I've accomplished hundreds of things that I think would terrify the average person. But the one thing I've yet to accomplish is my happiness with my body weight.

This seems to be something millions of other people can do. Millions more appear to have self control around food (aka: a lack the addiction issues.) And then millions more have zero option and/or are starving. Which makes my gluttony all the more shameful to me. It makes me feel like I'm taking more than my fair share.

Food is my one vice. It's a big one though (pun intended). It's a huge source of pleasure, happiness, social activity... But what I am learning is that all of that is ok. It's ok to get so much joy from eating and sharing food (and having food shared with me.) What's not ok for me is the quantity and my obsessiveness about food.

After seeing the scale dip and bob like a fishing float for so many months I've finally had it. I reached my limit and I'm motivated to change. I want to be "my very best self." And like all big changes, I have a plan.

So... I made this chart for myself that breaks my weight loss into doable small goals. Each goal met also comes with a small reward. A non-food reward of course.

I am intrinsically motivated right now, but a little external motivation is also helpful. So is accountability! I'm seeing my nutritionist again in October and with some hard work I could be down 30lbs by then.

My big picture is to lose 100lbs. This chart represents the first half. I always feel more confident with small, achievable goals. How do you eat an elephant? One bite at a time (said someone, sometime, although I'd never really eat an elephant. Or a shark.)

I was excited to see that with some serious dedication I could be halfway there by the new year. I'm calculating a safe loss of 2lbs per week. I'm sure it will come off easier at first, then harder as I go down. That's why I have a larger amount of weight for the first few goals.

I'm a big "right tool for the job" person, so I researched and found some tools that could compliment my plan and my chart.

I really suck at portion size, so I bought these little cups to help. I feel I can eat as much fruit and veg as I want, but I need help with protein and fats. 

I'm also going to try this:

It's a "goal planner" that's supposed to help when you're trying to change behaviors and reach specific goals.

I think these tools will be plenty to support me. Then I also have my mom who is all in and my husband. They both want to lose weight and are the two main people I eat with, so I think that will be incredibly helpful for me.

Losing weight would mean less stress on my joints and muscles. Less work for my organs. It can only benefit me and my health. It's long overdue, but I needed to be in the right mindset. 

Having loose skin worries me a bit, but I figure I'll deal with that when I need to. I won't let it put me off my goal when I've barely started.

So here's to another major accomplishment in the making!

What's New Pussycat? (Oh whoa whooooa whoa...)

There are many new things going on with me creatively, medically and in my home. One of the bigger things is I finally have my BiPap machine. 

At first I was given a CPAP which has continuous air flow. It didn't work for me at all. It was like drinking from a fire hose. It took me about 6 months to get a BiPap instead and I hope it was worth all the work. (A BiPap has less pressure going out and more going in.)

I'm able to tolerate it all night, but learning to keep my mouth shut is still a huge challenge for me. Yup. I'm a big time mouth breather. I have noticed that my lungs feel much better in the morning when I use my machine then when I don't. I can breathe much easier and don't feel as asthmatic. I did read that a BiPap is supposed to be helpful for asthma. 

A non-medical thing I'm doing that's new is watercolor painting.

I've always loved oil painting. But it's very hard to do in your home. It also requires a lot of chemicals, so I stopped doing it when I didn't have a student studio anymore. Acrylic painting is fun, but not the same as oils. But with watercolors there's far less setup and cleanup. It's much easier on my muscles too. It's challenging and new, so I've been having fun with it. 

My garden is really going all out now. We have this beautiful orange-ish sunflower out front that's just perfect.

I love spending time out there when I can.

We're doing a major remodel of our front area right now too. We're excited to have it all finished so we can enjoy it. We're getting new fencing, a new driveway and a new bigger front patio with a water fountain! It's actually more like a small waterfall. I'm so excited to see it done. 

I've been finding the contractors and coordinating as much of it (including the design) as I can. Then my husband jumps in and takes care of the financing end. We're a great team and so far things are moving along. It's a challenge to deal with contractors, let alone 4 of them, but I can do it.

So that has been taking a ton of my time.

And then there's my weight. I hit an all time high about a month ago and am working on reigning in my eating. But it's very hard.

I honestly feel like I don't eat a ton, but then I have to remember that I also don't get very much exercise. The pool is about it. And although it's good for me, it doesn't help me lose much weight. In fact it makes me hungry!!!

So that's an ongoing struggle and something that's on my mind a lot.

I'm also always researching migraines and trying to find something that will help me more than the tools I already have. 

Although I already have pink tinted glasses, I thought maybe they aren't tinted enough? I got the darkest pink that I could at the time. I love that you can just try out a theory by finding a new pair online. I ordered these last night with a darker red lens to try out. Many of these companies take returns too, so if I hate it I can get them re-done in a dark pink similar to what I have now. 

And of course you might have also noticed that I colored my hair red. Actually my mother helped me to color my hair red. As in I told her how to do it and she paid for the supplies and did it for me. What a mom. 

To go from blue/black to flaming copper red is no easy task, even for a fully trained hair dresser. But 30+ years of coloring my own hair taught me a lot! And the few times I did go to the salon for a color I paid close attention. 

It took her a full day, but she managed to get as close to what I wanted as was possible. I've been having fun being a redhead for a change. 

I'm trying to make time for friends in all of this, but my health has been really awful lately. I've needed a lot more rest and down time than usual (which was already a lot). Just making time for family and the house project is about all I'm good for right now. I'm counting the days till my next Botox shots for migraine (still a month away). I'm putting myself and my needs first, which is still hard for me to do.

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...

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.