How Lucky Am I?

It can be hard to remember how lucky I am right now, given the political world. But in many many ways my life has never been better. And since nothing lasts forever I really want to remember that.

I have my huge family around me. 

I didn't always have a very good relationship with my mother. In fact we didn't talk for 15 years (my choice.) We have since reconciled and she lives right around the corner from me. I love it. I get to see her many times a week. We always have such fun together. Laughing, talking, just being together. I love her and am so grateful for all of the time we get to spend together.

My half sisters and I have found each other five months ago, and we now have a relationship. I have always wanted to be one of three sisters and now I am. Something I thought was previously completely impossible. I love them and I love their children. I am the "Auntie Nette" to four stunning boys and one fiery girl (who will take no shit from anyone. Especially not boys.) 

The brood

Me and my little sister

Me and the middle sister

I have a best friend who is kind and lovely. She adores animals, is a fierce feminist and warrior woman. She is also chronically ill, so she can relate to me on a different level than healthy people. We've only been friends for a few years but we are incredibly close. I know I could count on her for anything. That is rare.

She got married this past Monday

My husband and I are very best friends. He cracks me up and makes me feel so special. So seen and heard. We have a very rare bond. I'm thankful we met so young so that we've been able to spend so much time together we're going on year 32 right now. My soul mate.

My son just called me his "confidant." That melted my heart. He also lives right around the corner. Something I'm incredibly grateful for. I appreciate our closeness and that he's as close to me as he can be to someone whose not his partner. I get to see him almost ever week. I love him very much.

He just turned 31 this week

My two dogs fill my world with sunshine and howls of laughter. Peels of laughter daily. They also fill my heart and my bed. Hahaha. I can't imagine my days or nights without them by my side. Often sandwiching me like the little pack that we are. 

My life is bursting with love everywhere I look. Every nook and cranny full to the rafters with people and animals who love me and who I love back. This is the first time in my life I can remember feeling this way. I want to savor every moment of it and keep them all safe and with me as long as I can.

Who do you want to be?

One of the things I love most about life (and there are many) is the chance to constantly re-invent yourself. It is literally never too late. You choose, for the most part, who you are. Who you want to be. Do you want to be a good parent? Do you want to be a scholar? A partner to someone? Adopt animals or children? Start a non-profit? Put out fires? What kind of person are you? You choose.

My newborn son's footprints. 1/23/94

This extends somewhat to the appearance you show the world. Do you chose to be a flaming redhead, or maybe a blonde. Do you only wear black with spikes on your shoes and metal chains? Do you wear no makeup at all and let your natural beauty shine through.

My Masters graduation. 2017

Of course by now we all know that there are many conditions that make it very difficult to manage weight. Hypothyroidism is one of them. I have it, so does my mother and son. My grandfather also had it. On top of that I'm over 50 and disabled, which makes the challenges all the larger. But it's not impossible.

The choices I make literally make me. 
I chose to be a stay at home mom. I have a huge "caring for others" streak that is essential to my person. I chose to go back to school and then to become a therapist. I chose to get married (one of the best decisions I ever made.) 

"
2013. Me not knowing how beautiful I was. I am.

Every moment of every day I make some kind of choice. I chose to sit down and write this blog.

Food is a difficult choice for me. I tend to be obsessive when I make a big change. Buying tools I feel like I'll need to succeed. Re-arranging my environment to best support my whopping new goal. It's the ADD in me and also a way I try to control things that are difficult to control.

I'm trying to make better food choices and to battle my addiction to food. I can feel that monster getting bigger. If I don't address it now it will take over my life, my mobility and my health. I don't choose that. 

Me in Iceland. 2014

My Simple Life

I had some lovely time to myself this morning. I was reflecting on my life and how much it has changed. I was thinking about how much of my life used to be consumed by work. Just like my husband. How I didn't even have time to think about eating or how to take care of myself. I was too busy taking care of others. My clients, my dogs, my husband and my son. I absolutely came last.

Now here I am stripped bare. My son is living with my mother. No career. One adorable little dog. I have all the time in the world,

I realized that like this wild and crazy collage of my family my "core" is a jumble of many things. Where there used to be one massive boulder in my day "WORK" there now are many smaller things. My garden, my pooch, my family, meals, movement, ceramics/artwork, socializing... I still have an incredibly rich, full life. It just looks completely different now.

Here's a story...
My mother bought me chives this winter and they didn't do well at all. When I was planting my spring garden I dug them up and planted them all together in a small clay pot. I kept them out back and still took care of them. Recently they all died after living their life cycle. I had let them flower rather than eat them. I was going to re-use the pot they were in, so I started digging them out. And look what I found!

From these tiny little chives came a giant bowl of onions. I don't even know how they all fit in that small pot. I just kept digging out more and more beautiful onions. I thought the plant was dead and useless but where I couldn't see it was making magic. 

I constantly learn from nature. She is a fantastic teacher if you just pay attention. There's a lot you can take away from that onion story. Growth happens where other's can't see it. When you think you're dying you're really transforming. Thrive where life puts you... I could go on and on.

My life is as full as that pot. I just have to dig a little to notice and see it.

I Made It to 50!

I've been 50 years old for less than a month now. I have some thoughts about it to share. Firstly I feel incredibly lucky to have made it to 50. I will never understand people who get depressed about aging. Quite the contrary. I feel incredibly fortunate and grateful to have lived as long as I have. 50 Feels like a big gift.

Also... Much of my life keeps getting better the older I am.

My 20's were entirely devoted to being the best mother I could be. My 30's were about my marriage and working on our relationship. Communication and lots of therapy. My 40's were completely about being in school to build my dream career. Then illness struck.

What will my 50's hold?

I have no idea. But I'm excited to see.

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.

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.

Giving Myself Pleasure

The big goal for myself this year is to spend more time in my own company. To explore myself and my personal interests now that I can't hold a traditional job. A job that used to fill 90% of my life, mind and time. 

I have started journaling again. Something I find very helpful for sorting out my thoughts and feelings. Writing with a pen also stimulates my mind in a very different way then blogging. To me my blogs are more of a guidebook that I can easily look back on for reference. My journal however is completely personal and private.

I'm once again growing out into and finding out what gives me pleasure. Here's just a sampling...

I used to look at taking care of myself as something I must do and that I had no choice in. This year I have changed that thinking to be something I'm fortunate to be able to do. I'm lucky to have the time and resources to take very good care of myself. So when I actively choose not to (by not doing my stretches or eating something that's not a good choice for my body) it's an insult to myself. It's my privilege to care for myself, not my obligation. I find that mindset much more helpful.

It helps me mentally to have my home reflect our families playful side. We have a lot of interesting collections and it's fun to create little curio displays around the house. I love having a playful home.

It's not just the visual side of my home that's important to me, but the scent as well. Fresh coffee, flowers, scented candles, a fresh fire log burning. All combine to make my home inviting, warm and cozy. And since this is where we all spend the great majority of our time since last year, that matters to me.

I could fill volumes with what I have learned from sharing my life with dogs. My sweet puppy is a "super senior" now in the twilight years of her life. I treat each moment I still get to spend with her as a great gift. Just watching her gives me endless pleasure. I'm thankful to be able to have had the opportunity to give her (and her sister's who went before her) such a good life.

I love to try new things, especially when it comes to decorating our teeny tiny home. Right now my work in progress is turning one side of our hallway into a giant wall of mirrors. I was gifted two unique, beautiful mirrors by my mother and three more from my sister-in-law. It has been a very fun project that's not over yet.

I love jewelry. It is one of the greatest passions in my life. I used to wish Elizabeth Taylor was my mother just so I could have her jewelry collection. Her daughter probably didn't like jewelry because that's how those things usually work. Just like my mother is not into jewelry at all. Go figure.

It's more than jewelry to me though. It's a story. So vintage jewelry holds a special place in my heart. It's like a sliver of time with an unknown history that gets to belong to you. I imagine the people who owned it before me. Their lives and their stories.

Stories have always given me pleasure. Even the hard ones, which is one of the reasons I loved my profession so much. But now I'm focusing on my own story and my own meaning in life.

Habits

My mother and I describe ourselves as the "Queens of lists". Every week we sit down and make a list of things we've been talking about. Usually something on a deep level or something we'd like to explore and grow in some way.

Last week we were discussing habits. Specifically things we'd like to become more of a "good" habit. Here's what I came up with:

Of course I also listen to my body. She comes first and sometimes habits fall by the wayside. Like this morning we were going to go swimming together, but my body just screamed "NOPE! No spoons for that today!" And I listened. Not something I used to be able to do at all, so I guess it is a new habit after all?

Here's me participating in some new weekly habits.

My new habits combined with my refusal to compare myself to my "old" self have resulted in something I really needed. A new routine in my life. A new way of living and being in the world. Which have resulted in this!...

Guarding my spoons

I love "spoon theory". As a visual person I can relate to energy being represented by spoons. Lately I've been learning how to guard my spoons better.

For example, if I have to take something to the back of my house (even though it's not that far) I'm learning to leave it on the table until I have more than one thing to go back. A big one that has been helping me lately is when I have to get up and down out of a chair.

If I need to do something that will require me to get up physically, more and more I will ask someone else in my home to do it for me (if they're around), or again wait until I have multiple things I need to do (like I have to pee AND I'll switch the laundry AND get myself more water). This does not come naturally to me. At all.

Did I mention this doesn't come naturally to me? I'm a multitasker for sure, but listening to my body and adjusting what I'm doing based on my what my body needs is incredibly hard. And I'm guessing that's not just for me, but for a lot of people.

I've noticed that now my spoons are now more dedicated to smaller things. 

One year ago 1 spoon would go to taking a shower and getting ready for the day. Now it's more like 1 for showering, 1 for putting on a bra, 1 for putting on makeup, 1 for the rest of my clothes, 1 for fixing my hair... which makes me much more selective about what I choose to do (not go around naked) and not do (wrangle on a bra every time). 

For me this is a huge part of learning day by day how to live with my chronic illness. Paying attention to what I can do that day, that moment and what's worth my spoons. 

Make Life Easier

Over the past two years I've learned ways to tweak my environment to save spoons. For example, opening a dresser drawer takes WAY more effort than putting something on a hook. I also have learned to not sweat the small stuff. Like taking time to turn my clothes all right side out all at once. It's easier for me to just do it one at a time as I wear things.

Here's a few modifications that have been incredibly helpful for me.

• Sit whenever I can instead of stand.
• Lean instead of free stand.
• Plan ahead.
• Think outside of the box (like my dresser is now just storage for things I don't use often like sunglasses and extra blankets).
• Work around your energy needs - if showers leave you exhausted, take them before bed instead of first thing in the morning.
• Use empty wall space as storage.
• Keep the things you use the most within easy reach and out in the open. (I love using a variety of pretty little bowls for things like hair clips, jewelry and my anti-vertigo bands.)
• Use bins instead of hanging things up.
• Use wall hooks for clothes or pajamas you wear the most.
• Using "travel size" instead of full size products.

In the kitchen I have a stool that's adjustable to sit on when cooking, but honestly my husband and mom feed me most of the time. It's not a job that I miss. When I do cook I keep it simple. That makes it healthier and saves my energy. We also meal plan weekly together, that way there's no stress around dinner time.

In the bathroom I love my shower stool and bars. I feel like everyone needs both in their shower even if they don't have any health issues. They didn't cost much and I use them every time. I also use bins, bags and hooks in the bathroom for my stuff. I've learned that "travel size" products are lighter and easier for me to use, so that's what I tend to buy. I've also cut WAY back on the number of products I use. "KISS" in the bathroom. 

Each spoon of my energy is precious and these minor tweaks add up fast for me. 

Daily Rhythm

After all of the holidays, my mom's birthday, my birthday, my son's birthday, I think I have something of a daily rhythm forming and it's really helpful.

I start my day off with a cup of coffee and a hand full of pills, like most Americans, but especially those with any kind of chronic illness/disability. 

Then I spend about 30minutes on some kind of household chore while I have the spoons. Laundry, dishes that kind of thing. After that I move into computer work. These days it's compiling my medical files for SSDI appeal of denial. 

Now I have all my relevant medical records on my hard drive and on my Google drive. There my mom and a family friend who is a PCP can both easily access my files and give me feedback if they notice something missing. AND if anything ever happens to my computer it's all backed up and organized. 

I have some other things in the work as far as SSDI goes, but it requires me leaving the house and is more complicated. It also requires more spoons. This is something I can do bit by bit every morning.

After that I eat something. Usually a banana, but sometimes avocado toast. Or sometimes it's actually lunch time and I have some kind of fish. I shower after I get my grub on.

When I emerge all soft and shiny fresh I usually switch gears and move onto something creative or go on a small errand or adventure with Sweetie and my Mom. Yesterday was rare in that I had the spoons for both. 

My Mom came over and while she was on an important phone call I made my FAVORITE dessert and something I was craving, rice krispy treats. Yes, it is hard for me to make, but it's a challenge I can still do. 

After her call we took my 13 year old "puppy" Sweetie out to our local Arboritum for a very short walk (Mom) roll (me). It was the first time Mom got to drive Pablo. She's in love.

After that the rest of my day is devoted to napping. Then my husband is home from work and the Man Cub is home from college. We all have dinner, watch a show and it's bed time. And no, I have no trouble taking a 2-3 hour nap and going to bed for the night soon after. Not. At. All. 

Not every day follows this flow 100%. Sometimes my Mom comes over in the morning and we spend the whole day together. Other times I don't see her at all and I do my own thing the whole day and maybe roll Sweetie on my own around my neighborhood. But a typical day is tending to follow this pattern and I love it.

Today I have my second cement person coming out. I hope it goes better than the first who totally flaked on me. I'm starting to feel a little more settled in my daily rhythms and even though I'm still struggling a lot with pain, fatigue, dizziness and other issues it does bring me a new feeling of calm that I welcome with open arms.