Reflecting on 2021

 

This year has come with many gains and loses for me. I lost my beloved Nana in mid-November. She was a second mother to me. Even though someone slips from the evil grasps of pain, it's still a loss. I know she's no longer suffering. But I also know I will never see her or hear her sing-song voice again. I kept some voicemails she left for me over the last few years and I'm grateful to have them. She had such an infectious laugh. One of my favorite things about my family as a whole is that we have all maintained our inner child. I can't say that for most people.

I also lost my sweet puppy girl of 16 years, Sweetie. Which I wrote about here. My son moved out of our home in an explosive way. That felt like a loss. And I felt like I finally had time to mourn my lack of ability to work. 

But my life is never just about loss. In fact every time I have a tremendous loss (like no longer being able to work), I also tend to have a huge gain (like my mother moving around the corner from me after being in England). 

So let's talk about my gains this year. 

Right up there with getting my clinicians license is my new fella Max. I worked very hard for that license. It was the climax of my education and training. Two thousand hours of working with clients, suffering through TB treatment, a total hysterectomy, a brain tumor and the start of my Mitochondrial Disease...WOW! For Max to be just as great speaks how important he is to me.

Another bright spot of my year was how much I was able to reconnect with my friends and family. My husband and I had a blast at "Friendsgiving" in November. We saw a lot of family that we missed last year. I had a life-changing heart-to-heart talk with my best friend since first grade. In short, I basked in the company of other people.

I like to think of myself as some kind of "Uber Introvert" who doesn't need the company of other people. But that's a lie I tell to protect myself from feeling rejected. Honestly I love to be around other people. And I'm doing much better at letting my limits be known.

Here are just a few things I want to remember that happened this year that were positive:

• I spent time with my Grandmother-in-law. One of my favorite people in the world.
• I had a lot of laughs with my Mama (just like last year, but it's important to savor those moments.)
• I produced some truly horrible art, but had fun doing it.
• I took some fantastic photos.
• I found new ways to do the things I love (asked for help, waited till later, worked around my disability.)
• I stopped fighting the need for rest.
• I went to the Monterey Bay Aquarium when they were practically empty. A dream come true!
• I saw the Mendocino Botanical Gardens for two days with the love of my life.
• I was finally approved for Whole Genome Sequencing along with my son and mother.
• We built our dream patio, complete with waterfall!
• I got my little room back (once my son left).
• I learned I can drink red wine again with some magical little drops that remove the sulfates. 
• I was kissed and hugged about a million times.
• I got back down to a weight that I feel ok with. Not perfect, but better.

Just looking at this list makes me feel both happy and proud. I love my life, even with its limitations. I am safe, warm, fed and very loved. I wish everyone in the world could say the same. That's my wish for 2022.

Life Goes On

 Sometimes life can click along with nothing changing for years. Then suddenly I can have months, weeks, days where things change so fast it's hard to feel present.

I recently lost my precious Sweetie girl. She was my canine companion, my fur baby for 16 years. I feel lucky to have had her so long. I was also aware that super old age really sucks... even for animals. I would say she was "not her best self" for the last two years of her life. Joint pain and dementia had set in. We did what we could to keep her happy and comfortable, but in the end she didn't even want to be touched much.

From the earth we are given and to her we one day return.

In the end she went quickly, thanks to veterinary medicine and our fast actions. I am grateful for her precious soul to have been a part of my life.

Now my grandparents are also facing a difficult end. Death that comes swiftly in the night is a rare blessing. Usually fog and pain are there years and years before death finally comes for us. I for one will welcome Death like an old friend and relish the sweet release when it's my turn. Pain is for fighting. Not death. Death is there to set us free. I never understand people who want to fight death. Even as a child that made no sense to me. 

They are very far away from me, both in distance and in life but that doesn't stop my love for them.

And then there was joy!
I found a new little boy needing a home and love. This is our brand new Miniature Pinscher named Max.

Animals give us so much love and teach us so much about life. Like all of nature, we just have to pay attention to learn.

What has also been going well is the help I've been getting for my health. My migraine neurologist is still out on maternity leave, but I'm receiving my Botox every 3 months. I also just had my bi-annual check in with my muscular neurologist. That went well. I'm having a lot of pain and weakness in my neck so I'm getting fitted with a special neck brace to wear sometimes. They think that will help. I'm also getting new wheelchair tires and batteries soon.

I had my eyes checked and the optician is recommending I try "Prism" lenses. Apparently my eyes aren't tracking together and the prism helps that. It may also help my migraines.

Life is going quickly.

The holidays will be here soon. Thanksgiving, then Winter Solstice and Christmas. I feel like if I even blink I will miss them. I'm just trying to be mindful and enjoy each moment as they come. Being present in the present.

Growing & Shrinking

Growth isn't linear. That's something I remind myself of constantly. It's actually a lot like grief. I will have times of great growth, times of dormancy and times of regression. It's not a beautiful upward swoosh like a Nike logo. It's more like that hair ball clogging your drain. And it can feel that way at times too.

I've lost 24lbs since early June of this year. As of today. As of right now. That number goes up and down at times, but it's on a trend that I like. Each of those pounds has felt like a Herculean effort on my part. Resisting a parade of temptations (and sometimes giving in), swimming as much as I can, weighing myself weekly, then every few days, then daily, then every few days, then weekly... It's a dance that I'm doing with myself. Sometimes light on my feet, other times stepping on my own toes.

I always read that it's harder to lose weight the older you get as your metabolism goes. Back when I was "healthy" it was hard for me to lose weight because of my sluggish raisin of a thyroid. Even with synthetic replacement. Add a mitochondrial disease on top that hugely affects my energy and muscle ability and I was in for a bigger challenge than I realized.

Hence the drain clog of a process. Up and down and all around, back upon itself. But it is change. And I feel a lot of pride. I've lost a small toddler so far! Only a full adult to go. 

I see myself being pleased with about 82 more pounds lost, but I'll see how it feels.

I have vacillated between being a happy, thick adult woman and wishing to be a thinner version of myself my entire adult life. There's an important distinction there because I've never wished to be anyone other than me. Not even when I had a brain tumor and started to need the help of a wheelchair. Social media doesn't give me FOMO or make me covet other women's looks. Rather it gives me an appreciation for the feminine diversity and makes me even happier in my skin than I was before. 

Any desire to be thinner has always come down to health for me. In the past I would notice things such as my lack of stamina going up stairs. Joint pain or muscle pain after doing a Zumba fitness class. How I felt I should and could be more flexible. That hit an all time high with my mitochondrial disease. 

Self sympathy played a big part in my weight staying higher than I like once I had compromised mobility and muscle use. I told myself that if I couldn't have an orgasm I could have a massive Taco Bell feast or a whole batch of rice crispy treats. Not that I had those things very often. My big problem was just eating too many calories on a regular basis. Not particularly anything unhealthy regularly.

And then there was COVID. Everyone I know gained weight during 2020. I was no exception. But when I passed 300lbs red alarm bells went off in my head. I had come to a crossroads. Was I going to be a life-long big woman who would eat what I wanted and not worry about the consequences? I have many friends who have chosen this path and they are very happy. They look stunning! But I knew it wasn't for me.

The more weight and pressure I put on my joints and muscles, the unhealthier I personally am because of my disease. My body has to work that much harder to maintain any mobility and I have a lot more pain. I couldn't do that to myself. I love myself more than the liberated feeling I get from being able to eat what I want.

I want to feel as good as I feel in the water, on land. This can only happen with weight loss. A serious amount of weight loss. I'm fine with going slow, not going in a linear direction, but I have a destination in sight. I want to be a might lighter version of myself, for myself. For my health and for all of my muscles. 

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!