Magic

If I was told 3 magic beans would improve my quality of life I would buy them and eat them. Move over Jack.

Every time I try something new, start a new regimen or try a new medication, I am hopeful. I am an optimistic person by nature. It shines through with regards to my disability. Each and every time it gets me. "Maybe this will be the one. The one that gives me my life back." Not even a "part" of my life. But my WHOLE life.

I love this image and I wish I knew who to credit it to.

"It may turn me into a marathon runner. Leave me migraine and head pain free. Give me back 100% of my body, pain free. Turn me into a sex maniac for my husband. Give me the energy of a 20 year old." Do you think my expectations are maybe a tad bit unrealistic? NEVER!

 Me in Ireland - 2016  

When we last went to Hawaii I actually thought I could do everything we had on our agenda. No questions asked. I really believed I could snorkel in the the morning, hit a museum in the afternoon and go out to a lovely dinner at night. All with just my rollator (if I even needed THAT I scoffed.) Want to guess how that went? I think it's the most I've cried on any vacation ever. Let's leave it at that.

Aloha from the hotel bed

But that didn't stop me from hoping.

I think part of it is the strangeness of my disease and the fact that sometimes something really will make a huge improvement. Or at least it happened once. When I changed my diet to short chain fatty acid. That was the most remarkable improvement I've ever made. It did indeed feel magical. I went from using my chair every time we left the house (and needing a wheelchair van) to walking on my own everywhere without even a cane or rollator. Remarkable. 

August 2023. Right before I started the short chain fatty acid diet

My doctors didn't know what to think. It was Genetics that found out I had an issue processioning long chain fatty acids. The funny thing is most people do. It just doesn't seem to affect them as much as it does me. It also affects people with Autism, though my son would never do anything about it. He thinks whisky is a health food. And who knows? Maybe it is? 

 My biggest magic trick. Walking again. August 13, 2023

When I was craving sugar and carb while battling it out with Lamotragine (for seizures) I thought maybe I just need a lot of sugar? I think that's true when I'm ill or in a muscle crash. I don't think it's true daily. I tried out a glucose tablet and it just gave me a bad headache.

I still have that "magical thinking" whenever a new issue is discovered. "Maybe I was having seizures the whole time and now that I'm on anti-seizure medication I'll be 'fixed!" Or "Maybe it was migraines and now that I'm on Botox I'll be 'fixed!" I swear I do this constantly.

But the truth I really need to embrace (yes, after all this time) is that I'm disabled. Severely so. I have a mitochondrial disorder. It is slowly progressive and degenerative. I survived a brain tumor. Both things impact me in a huge way. There is no silver bullet or magical bean that will remove those two facts. I require certain things to thrive. 

Pottery, creating things, spending as much time as I can with friends and family (both furry and non-furry.) Rest, rest, rest. Healthy foods, my medications (14 pills in the morning, 10 in the afternoon and 11 at night.) My medical team helping me stay at my baseline or better. Love. New clothes, HAH! All of these help me to thrive.

Time with my family always helps keep my spirits high 
and the gratitude flowing. 

I have good hills and bad dips. Just like anyone. I have happy days and miserable. I have days where I have extra energy to get a lot accomplished (like today.) And days where I just have to stay in bed. I miss gaps of time every day to rest. So my time is very precious.

My life just as it is feels magical most days. I'm full of gratitude for what I DO have and try not to think about what I lost. Things aren't "worse" just "different."

 

No Stress, Just Play

My husband and I attended our first Indian wedding this weekend. The best thing about it was that it was a bubble in time. Everyone was so colorful. The music was fun and forced you to dance (as much as I could.) Getting all dressed up in brand new... everything made me feel like a little kid again playing "dress up." It was a joyful celebration and we were honored to be included.

 

It is so easy to let fear and rage take over my life these days. Between sickness, my mitochondrial dysfunction and the obvious... politics, it felt like my brain just slipped into a warm bath. I felt rejuvenated and hopeful. Nothing is better than the celebration of love.

 

My mom commented that she's never seen my husband look so happy as he did in the photos from the wedding. I have to agree. Its been a long time since I saw him smile that big and let loose. There wasn't even alcohol. He was just really that happy. I love it.

I danced too much and paid the price, but it was worth it. It felt so good to get out there and move to the music. I miss that. And I can't remember the last time my husband and I danced with each other. Moments like that are sacred.

As the world surrounds us with hatred and chaos it was good to remember that there's still love. People still falling in love. Having parties. Dancing. Eating cake. Coming home from the hospital (* YAY MOM!) Kissing, hugging, making art, taking trips, watching puffy clouds that look like animals. Life is still magical. I just have to pay attention and celebrate being alive.

My dogs, my life

My mom likes to say that my dogs are like my children. She's not wrong. Although they take up less time than children, I'm sure they take up way more time that your average big dog. Here's what my day with them looks like.

I wake up to both of them in bed with me (bliss.) Max has been nudging me with his tiny head and nibbling at me letting me know it's breakfast time. Though sometimes my husband feeds them breakfast and they just pile back in to bed with me, for which I am very grateful. We always have rubs and cuddle time where I pet them, rub them, kiss them and just in general tell them how amazing they are. I wish I could start my day with someone doing that to me.

8AM Get up and feed the dogs.
Open the curtains, turn on Max's heated blanket. Turn on the lights.
Drink water and take my own medication (dogs come first.)

Make important phone calls. For me or my son. Typically doctor's appointments for referrals to a specialist (or two, or three.) These calls can take up to an hour each.

While I'm on hold I get dressed. Typically with both dogs thinking this means we're going out somewhere. Sometimes it does. Most of the time it doesn't.

 
I make some coffee, put on the Monterey Bay Aquarium live feed and try to journal. Usually at this time they are getting sick of being ignored and they both want my toast. 

9AM If it's not a gym day then I give them more loves, pets and rubs. I'll often sit on the couch with them both while I try to get more work done. This can be blogging, trying to save us money, chasing down money we are owed, texting my handyman... just life stuff.

The couch is THEIRS

10AM If it is a gym day then I'm off to the gym. Then they are typically ((GASP!)) left ALONE! If not I like to be productive in the house. Start laundry, do leftover dishes, clean up, etc...

11AM Is walk time. I try to walk them for about an hour. If I'm at the gym I typically do this when I get home. Or I make my husband do it if he's home.

My mom is even worse. She gives them massive, heaping spoons of peanut butter. 

12PM Snack and "Peanut butter pill" time. Max has to take Prilosec every day for his delicate tummy. If you see a pile of vomit in the house, 98% of the time it came from Max. 100% of the time if you find pee it was Max (but only when it's raining out and he doesn't want to get wet.) We even have a song that goes with peanut butter pill time. Margo just gets a little spoon of peanut butter. Then (because that's not enough of a treat) they get some crispy salmon skin. 

Yes, I bought them that massive dog bed to share. They adore it.

1PM They will usually rest after a belly full of snacks. Margo sometimes gets playful. Max rarely will play with her, so guess who does? Yup. Me. Her favorite game is keep away with her black and white stripped fuzzy toy that rattles. Not to be confused with her brown and white fuzzy toy that rattles. But that's her second choice. I have about 10 of these hidden so I can replace them when she wears them out. 

Margo and mommy resting

2PM Rest for all three of us. I'm usually down from 2-5 or so during each day. That's a lot of time, but I have my little pack to keep me company.

5PM DINNER TIME! You bet Max doesn't let me forget it. In fact he usually starts bugging me around 3:30. Very restful.

My boy Max. "Little Man, Maxie P, Little Chonkers, Chubby Guy, Dumptruck..."

6PM Dad comes home or is done with work. Now they get love from Dad.

7PM We make dinner and eat. Of course this requires close supervision by Margo. Sometimes Max too, but he likes to wait till the food is cooked before he makes his move.

7:30PM Another favorite time of theirs. They beg while we eat dinner. Then we all cuddle on the couch together. If we could do nothing but this for forever, they would be quite contented. We typically watch TV while they get more rubs, loves and eventually burrow themselves in one of our massive piles of throws covering our couch. Or should I say their couch.

Beautiful Margo. So cute when she's asleep. A bossy terror when awake. (Baby Girl, Little Stinker, Margo P., Sweet Baby Girl, Precious, Bossy Pants.)

 9PM Time for bed. Typically Max will come with us. Lately they've both been wanting to just sleep on the couch for most of the night. Margo even does so for the entire night once in a while. I think because it's spring? In the winter they both sleep all night with us 100% of the time.

Although if we want to be intimate you can guarantee that it's the night they both decide to come to bed with us. 

 I do want to improve managing my time and having it include art. I seem to constantly put that one by the wayside and instead fill my time with tasks or dogs. As much as I adore my babies (I mean dogs), I have to constantly remind myself that they are dogs. They'll be ok if I do art for an hour. Their world won't end and they won't feel abused. Same if I leave them home alone to go take care of myself at the gym.

The better I take care of myself, the more I can take care of them.  

PS: The whole time I wrote this they've both been yapping at me like I forgot something. I didn't. They just want my undivided attention. I have to work on that.  

 

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.

Rage and Resilience

 

Our world is full of horrors right now. Abroad women in Afghanistan are now told that they really don't need two eyes and that they should at all times cover one up. In Gaza everyone is being starved to death while reporters are bombed... intentionally. More reporters have been killed in Gaza than in every war ever put together.

At home a mad man is president. He has destroyed Democracy and women are being attacked right and left. Our rights are being stripped, our jobs, our art, our voices. The disabled are being intentionally murdered by vaccine and medication denial and no more support financially.

I'm very worried about my own disabled son who receives free medical care.

We've never been here in history before. Taken such a massive step backwards as a civilization. Men and their greed for power are murdering millions and millions of people. It's time women take power back. Men have proved they are unfit.

Personally it's very hard to keep aware of what's going on here and abroad without completely marinating in it. Balancing the fear with the resiliency. 

I do have a "go bag" packed. It contains cash, our passports, birth certificates, social security cards, medical information, all the information we need for the dogs and other important documents. My mother has the same. 

My husband made fun of me at first, but shut up after a friend of his said he did the same thing. 

We live in crazy, uncertain times right now. But even so, there is still joy to be found in friends and family.

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

I'm Not That Person... Yet

In my dream life... 

I'm up with the sun at 6AM. I start the day with a protein smoothie (not a giant mug of coffee). I pull on my workout clothes, kiss my dogs and head to the gym. After an hour of yoga or swimming I come home, shower and dress for the day. It's now around 9AM. I take my puppies out for a walk or adventure in town. They come home pooped and we're all ready for some food. I have a healthy little cup of yogurt, blueberries and gluten free granola (or some hot oatmeal). 

It's now around 10:30. Time for some art! I work on a painting, or drawing, or just play around. Maybe I even have a pottery studio? I throw on my apron and do some sculpting. Or perhaps photography? Art till 12 my dear.

I break for a small lunch with my honey. Maybe a chicken salad? Light, healthy and filling. Protein to keep me going through the day. In this dream life I have no cravings and am satisfied with what I have. 

Look at everything I've accomplished and it's only 1PM!

Now I work from 1-3PM. Maybe it's writing a book, paperwork for my support groups, volunteer work or just reading a good book.

3-4 House time. I work on a house project, garden, meal prep, do laundry or clean something up. 

It's already 4PM and now it's time to walk the dogs again. After another adventure they're ready for their dinner. Lucky dogs. I play with them after dinner. 

5-6 I'm on my computer. Blogging, e-mailing friends, posting pictures of my art. Whatever I choose.

6 We start making dinner together while talking about our busy day. We're both tired, but happy.

7-9 TV while getting my feet rubbed and petting the dogs. I'm sandwiched between them loving life.

9 is bedtime. I'm exhausted after such a busy day.

Although this isn't my life yet, it's pretty close. I still rest most days in the middle of the day. Like 3-5PM if I do. I also tend to sleep in almost every morning. Some mornings I even sleep till 10AM. I can't tell you the last time I was up at 6AM.

I haven't been back to my gym in two weeks. Something I want to remedy. A long time to go without vigorous exercise or yoga. I'd like to be more consistent.

Life happens. Things get in the way. I want to learn to pivot better and stick with what really matters to me. Art, health and happiness.

Settling In

It's 2024 and I'd say I'm settling in nicely. I have two beautiful, funny dogs now who make my life so fun. I have my mobility back. I have my son out of my mom's house and working hard to be an independent adult. I have pottery studio 2-3 times a month. I'm loving Apple Fitness with it's Yoga, stretching and Meditation. I'm also trying to sell our wheelchair van.

My near future plans include taking some online courses to get my license back and become a supervisor in my profession.

Going for a hike

Doing more art

Checking out a close gym's yoga class

I'm still more fatigued than I was before all this happened to me. Which is to be expected. But when I'm awake my energy is hugely improved. I can do multiple things in a day which I never could do before. And drive. I can't under-state how great it is to be able to drive myself again. -WHEW!-

I feel like things are going very well for me. I'm spending time with friends and family. Living my life and thriving, not just surviving.

Margo

Max

My Two Loves

For as long as I can remember (and that's quite a long time now) I've had two major loves in my life. Passions really.

1- Helping people

and

2- Art

I remember if there was ever someone in need or who looked "different" I would befriend and help them right away. I choose my best friend in the first grade not based on if we wanted to play the same game, but because she was so physically unattractive she was getting teased. Helping others is something I was just born to do.

A recent bowl of mine waiting to be fired.

I am also a born artist. My father was (maybe still is?) a visual artist and a musician. My mother is also very creative and has an eye for design. My grandfather said he had someone in the family who was also an artist. I love any medium I can get my hands on, but oil paints are my real passion.

I like photography because I always have my camera on me (my phone). Oil paints are both very expensive and very toxic. You have to use a lot of caution working with and around them. It was fantastic when I had a whole studio to work in. Doing it from home is trickier. Ceramics has been a joy. I never have any expectations for myself. I just do what I want and relish the process.

Having these loves you would think I would want to do art therapy with people? Not really. I like being "in the zone" and alone when I do my art (ceramics is the exception). Each requires my full attention. Mixing them feels strange.

So now that I have some strength and energy back, who get's that attention? What do I focus on? I feel pulled to reignite my love affair with painting. But I also want to get back to helping people more. Is there room for both in my future? Or will something else suffer.

I already feel like each day is bursting. Where do I squeeze in the time for my loves? That's a challenge most people have. The answer is to just make it a priority and do it. Just do it. 

My Colorful Life

Every day since mid-August (two short months ago) I pinch myself. I can't help but think "Is this how 'normal' people feel? Like allllll the time?" It baffles me. I can't remember a time when I had this... much... energy. Seriously. Not when I was a kid. Not as a teen. Not as an adult. I wonder how long I've actually had symptoms of this disease?

Here's what I've been doing with this new energy source.

• Friends old and new. Relationships outside of my family have been incredibly hard to manage with my crippling fatigue. It feels fantastic to be able to devote some time to my friends. And I've made a few new ones recently. Nothing I could have even considered before.
  
  
  
  
  
• Gardening. My husband said the other day that I've "taken over the entire garden." He said it in a good way. He's been incredibly busy. 
  
  
  
  
  
• Home decorating. My house was in need of a facelift. I'm in the process of painting our fireplace wall and getting my home ready for some company.
  
  
  
  
  
• Entertaining. Having friends and family in our home before was exhausting. My husband had to do most of the work. It wasn't unusual for me to have to leave mid-party to go and sleep. I'm looking forward to winter holiday entertaining while conscious.
  
  
  
  
  
• Working out. I'm enjoying the gym very much. I took a yoga class for the first time yesterday. I loved it, but not as much as Zumba. I'm a high energy person now and have fun dancing with a room full of other people.
  
  
  
  
  
• Max. Poor Max. Before he would be stuck sleeping with me all day. Now I walk him twice a day (weather permitting) and he's with me as much as possible. Just this morning I walked him around the block. Now he's about to come with me to the store. Later today we're meeting a friend for tea. He's my little "adventure buddy" and he loves it.
  
  
  
  
  
  
  
  
• My hobbies. My husband and I recently did a Raku workshop that was long and intense. It was also located on a farm. Not wheelchair friendly at all. Nothing I could have done before, even if I had the energy for it. 
  
  
  
  
  
  
  
  

I can't explain what it means to feel fully alive again. I didn't get my "life" back. Instead I gained new experiences, new relationships and a more engaging future. My life is richer. Fuller. It feels like the movie The Wizard of Oz when it goes from black and white to color. My life as a sick person was black and white. Now it is so full of color that it's blinding.