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.

I'm a Walking Miracle

Sometimes I get so caught up in the day-to-day of things that I forget what a miracle I am. To be walking my dogs, making plans for a vacation, camping with friends... all of these things are joyous moments that I thought were no longer in my future.

The little things too. Doing laundry, making my bed, going food shopping, riding my bike. Nothing I would have been doing this time last year. 

I feel like the most fortunate woman alive. To be able to be in my body, in my life, full-on once more. 

Both of these pictures mean a lot to me. I'm doing things I hadn't done for years. Walked on the beach and climbed stairs. Both are momentous occasions for me.

I take nothing for granted and am thankful for each day that I have my mobility. 

Magical Mermaid Moments

I've always been in love with water. Well, my mother tells of a brief moment when I was a baby screaming so loud in swim class that they politely asked us to leave. But as long as I can remember I've been in love with the water. Maybe that's more accurate? All water. Lakes, the beautiful ocean, ponds, puddles, rain and my beloved swimming pools.

I was a very fortunate child to always have access to a swimming pool. I spent all summer, every summer in my Grandmother's pool. In high school I was even briefly captain of my swim team. Brief because my math grades were so bad they took me off the team. Horribly cruel. I think anyone crazy enough to swim 2 hours before school and 2 hours after school every day should be allowed to be on any team they want. But I digress. 

Water is my second home. I'm always at peace in her embrace. It's a constant wonder to me even still. Every time I slip in to any kind of water I breathe that sweet sigh of release, of being safe and held. We love each other and I'm never tense or frightened, no matter what form she takes.

I'm most fortunate to still have access to a pool during quarantine. I talked about it here when my Mama and I were first able to go in her pool. Since then we try to go as much as we can. Typically 2-3 times a week. Not only do we swim, but we also love to play around like a couple of kids. We laugh endlessly and it nurtures our bodies and spirits. And every single time I tell myself how lucky I am.

Lucky to still be able to swim. To have access to water. To be able to get in and out on my own. To laugh and enjoy my time. Water has always been one of the biggest blessings in my life. Almost like another mother. So there is something good about summer and all the hot weather after all. I'm able to enjoy the water's embrace on a regular basis. 

How I've Changed

Humans are bags of squishy bacteria and water. We're sensitive and vulnerable. It's amazing we live as long as we do given our ability to succumb to the slightest virus, infection or change to our bodies. And we do change. All the time.

My body has been through a lot in its 47 years. Car accidents, a pregnancy, multiple surgeries, TB, brain surgery and a genetic mutation. Without modern medicine I would have died a hundred times over by now. But not only am I still here, my serious health issues have changed me... for the better.

I believe I am a much better person now than I was before I had Latent Tuberculosis or my brain tumor. I am far more patient. I let little things go very quickly. I have a lot more perspective and love for others. I'm way less shy and more outspoken. I am fast to let people know I love them (animals too). I smile a lot more. 

But why?
How?

Because I know now what's most important. It's not being first in line or looking young and beautiful. What's most important to me now is that the people I love KNOW 100% that I love them. That I leave strangers feeling happier and in a better mood than before they interacted with me. That I make the world a little bit better just by being alive. By being here and a part of it. That's what matters most to me. Not superficial, shallow stuff.

Each day I'm grateful to still be here. I'm appreciative that I have my beautiful wheelchair and medicine to help me feel better. Doctors who try and help me live my best life and a family I'm devoted to.

I hope I'm here for years to come because I love my life.

Accomplishments

When I was in school an accomplishment was finishing a major assignment or passing a tough final. When I was working an accomplishment was making a breakthrough with a client or making my bonus. Today an accomplishment is doing a load of laundry or watering my plants. 

Accomplishments are necessary goals that keep me feeling good about myself, my skills and my life. Even though those goals have changed drastically over the last month, they're still important for me.

Here's a few examples of what I consider to be accomplishments this week:

1. I turned in my application for my town's disabled community transit and got my card. This gives me more options to get out now that I'm driving much less.
2. I asked my doctor to sign off on some important paperwork for me... and he did! 
3. I got my first SSI disability payment. That was an intense process and I felt proud that I accomplished it. 
4. I made it to the mall with my mom (she drove).
5. I made dinner last night. It was hard, but I did it!
6. I walked my dog twice this week with my chair.
7. I talked to my doctor about my new symptoms in person.
8. I made an appointment with a new neurologist and scheduled my next brain MRI.
9. I shaved my legs.
10. I went to the bank (like INSIDE!) and stood while I waited.

One good day after another

My "Mito Cocktail" has been helping my energy and muscle weakness in major ways. First came a huge increase in my energy levels. As anyone with a chronic disease/illness knows fatigue is a crippling part of it. Sometimes the worst part. Rest never revives you and you're just always running on zero spoons. So to feel energetic, even if my body disagreed was fantastic.

Next came an improvement in my muscles. I'm not "back to where I was" last year, but I think a big part of that could just be my loss of tone and strength from having to sit so much.

Shopping with just a cart. What a joy!

I see my neurologist April 2nd and have a slew of questions for him. I know the mitochondrial disease is "un-treatable" but I don't know if that means my symptoms will get worse over time, or if we halted the progression with the medications? Should I expect this relief to be short lived? Could I regress back at any time? Or is this my new normal as long as I keep up with the meds?

Having a chronic illness has taught me a lot about living in the moment and doing what you can for that day. I feel like I appreciate things more and I'm much less fearful. I really do make the most of each day, and that feels like a wonderful gift.

For example, I'm a "rubenesque" woman. I've never worn a bikini my whole adult life, but I've always wanted to. In the past I've told myself "I'm too fat. I couldn't 'pull it off.' Maybe when I lose weight I'll think about it." But guess what I got last week? Yup, a hot a$$ bikini. At 46 years old and being a size 22 (US size) I bought a fricken two piece. And not the blousy tops with super high pants kind that look like a one piece. I bought a hot push up underwire bra and low slung bottoms bikini. And I feel like a Goddess in it (and my husband agrees that I look fantastic.)

I mean seriously, life is way to short and precious to second guess, judge, hold a grudge or doubt yourself. If you want something bad enough, just make it happen! But enjoy the ride. I'm enjoying my ride regardless of what my body can or cannot do in any given moment. And I'm grateful for what I have while I have it.