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.  

 

What Matters Most

Time is a finite resource. It's vital to make the most of it. And I don't mean I should be rushing to get as much done as possible. But I can use some help prioritizing what is most important in my life and spending my time there.

I'm feeling medical burnout. Even though I have an EEG scheduled for tomorrow to check into the whole "You're having silent seizures" news. This year I really don't want to prioritize medical care. Endless appointments where everyone says the same thing and it doesn't help much. 

I'm also feeling done with spending time with certain people. Like my in-laws. As much as I love them, I just don't want to spend time with them. I don't particularly enjoy their company and they don't have much to add to my life. In fact, they feel like work.

The only person who is work who gets to stay in my life is my son. That's it. I have no time or energy for anyone extra.

I spent a lot of time with friends this year. More than I can remember for ages. It was helpful to weed out who adds to my life and who doesn't. Everyone has hard times and good. I don't expect rainbows and sunshine constantly. But I want an overall positive reciprocal relationship with my friends.

So with all of this in mind. Here are my priorities for how to spend my time this year.

2026

1. Taking care of myself. Mentally and physically. Yoga, swimming, dancing, moving, sleeping. Doing what I need to do to feel good and be happy with myself.
   
   
2. Spending time with my mom, my dogs and my husband. Enjoying them and just living life together.
   
   
3. ART. Being committed to spending time on my art, whatever that looks like. Clay, doodles, painting, henna, crafting, drawing...
   
   
4. Live my values and drop people who don't share them. Animal welfare, feminist issues, slow fashion, commitment to people I love. All of these things matter a lot to me. I don't have time for people who live their lives blindly.
   
   

My mother just threw me the absolute best 53rd birthday party. It was women only and filled with such positive energy. I could tell we were all very thirsty for such an occasion. It was also an excellent way to start off a fresh new year. Showing me the potential of all of the women in my life and how powerful we all are together.

More of that this year please!

TWO CAKES!!!

What 53 looks like

A Snapshot in Time

 April 4th, 2018 I started this blog. I knew something was wrong with me, but I had no idea what. In 2015 I tested positive for Tuberculosis. I was on the drug Plaquenil for 9 months. It was awful. I had a whole slew of side effects and took a year off of grad school mid-way through a two year program. I was a wreck. 

At the time it was the worst thing that happened to me physically. HAH! I just have to laugh looking back. It's like stubbing your toe and thinking that's the worst thing ever only later to have all your limbs cut off with a chainsaw.

I won't rehash my complete timeline, because I did a good job doing it here with pictures. But writing a book about my journey has been on my mind. Given that I was thinking pictures are more powerful than words sometimes. My opening could be this montage of my journey...

Success is the word for this year.

I graduated with my Masters in Counseling Psychology. But by the end of the year I'm experiencing some pretty major fatigue. I intuitively know something is wrong.

Fighter is my word for 2018. 

I got my Mitochondrial Myopathy diagnosis, along with brain surgery. I felt like I was just fighting everything coming at me this entire year. My mobility was a big struggle this year. It was all terrifying. I worked full time this whole year.

Surviving is the word that comes to mind for 2019. 

You know how they say "thrive, don't just survive." Well, I was surviving as best as I knew how. I left my dream job, no longer able to keep up mentally. I'm diagnosed with chronic migraines and setting into using a wheelchair any time I'm out.

Joy.

I know that sounds so strange given what happened to the world in 2020. But for me it was validating seeing everyone's lives change so dramatically like mine had. It also brought us much closer as a family. Our son was living with us and we made a lot of moments of happiness this year. 

Content.

In 2021 I felt like I was really settling into my new life. I built up my core medical team and started finally feeling my symptoms being more managed. I felt much less scared than I had in the past. 

Weary.

Although I have many blessings in my life, I remember just being completely wiped out this year. I would try to have company or go to someone's house only to have it leaving me totally drained. I'm so fatigued that I can't make even the most basic decisions.

Miraculous.

This year I learn about my processing issues of long-chain fatty acids. I drastically change my diet and am mobile again. I still have a lot of fatigue and some atrophy, but I'm able to do so many things I thought I never would again. Everything is exciting and new again.

Thriving.

I'm working on my fitness and physical health. I still struggle with my chronic migraines and fatigue, but I'm able to do so much more day by day.

Insanity. (In a good way.)

I change my diet even more. I'm focused on short-chain fatty acids, gluten free and vegetarian. I feel even better. I can go some days with no nap now and when I do nap it's for much shorter a period of time. My strength and stamina is finally up to pre-illness levels.

I'm so excited to see what the rest of this year and next year hold. I'm working on my food addiction, so hopefully I'll make some progress there soon.

Times and Tides

I have learned in my 51 years on this planet that if I pay close attention, nature is the best teacher of all. That's one of the things I love most about Polynesian culture. Although it's not the only culture that lives so close to the Earth, it's the main one that I know and admire. Living on a volcanic island, like Hawaii and Iceland, you can't help but live in sync with nature. You are hugely dependent on nature for your survival. Any second you could be wiped out by her wrath, or enormously rewarded. We've lost that connection in more urban environments. No matter how many parks and green belts there are.

Not the same as a park

One of the big lessons nature taught me is that no growth can occur without destruction. Usually complete and violent destruction. Mother Nature loves nothing more than a clean slate. I respect that hugely. I look back on my life and see my own biggest periods of growth occurring after total devastation.

The Hawaiians also know this, which is why they focus on the "now" so intensely. Everyone has heard of "island time" and "hang loose." To me those mean exactly what my mother practices and knows so well. "Life's too short and precious to rush through." It's very easy to get caught up in the pressures of everyone else around you and start rushing through everything, even when there's no need. Rushing to our cars from the store. Rushing through the store. Rushing to the store. What happens if we're late? Typically nothing awful. You're just a little late *but not by "Island Time!"

Hawaiians also take full advantage of all of nature's gifts. The original native diet was very high in fish and fruits. It wasn't until American's came to take over that we introduced Spam. Although the Japanese labor force that was imported in to work the pineapple fields can take the blame for rice. I felt like I had never eaten a banana before until I had an Apple Banana in Hawaii right off the tree. Here we shop at the grocery store, or if you're very lucky, the Farmer's Market. But we typically eat far from nature. 

I'm very guilty of this. Frozen pizza, macaroni and cheese, heck! Even just cheese and yogurt. All are heavily processed foods that are known to contribute to disease. Does that stop me? No. It's what I grew up with and what I love. Though culture can and does change. Again, nature taught me that nothing is permanent and everything changes all the time. Even when you can't see it. Seashores are being eroded. Soil shifted. Rocks worn away. Diamonds created from stardust. Humans from blobs of cells. 

There is nothing from nature on this truck

Every so often I feel like I wake up from a culture induced stupor and wake up to the tides of nature. Fall has historically been one of those times for me. The changes in the natural world are so profound at this time that I can't help but to take notice. This always has been a time of inward reflection for me. This fall I didn't like what I saw.

I saw myself self-sabotaging over and over and over again. Doing nothing to support my own health. And little that nurtures my mental well-being. I have been shoving down the anger and grief over the death of the main male figure in my life, my Grandfather, who passed violently three short months ago. I have been feeding myself to comfort mentally rather than feeding myself what I know I need physically. I have been taking great care of others and not so great care of myself. A tried and true pattern of mine. I put other's preferences ahead of my own and lose focus of my own path as it crosses with others.

I am painfully aware of how easy it would be for my to lose myself completely to my new family. Stop going to the gym and just focus on them. But I have goals and I need to re-focus right now.

My Goals (what I want to re-focus on)

1.  My health. Eating the foods I need to eat to be as strong and healthy as possible. High fiber whole foods that will product short-chain fatty acids in my gut microbiome. Not long. This also includes going to the gym at least three times a week to work on my strength and flexibility. 
   
   
   
2. My creativity. Setting aside time for writing, ceramics, drawing, painting, whatever I want to express what's inside me.
   
   
3. My emotions. Processing my feelings about the horrible death of my grandfather.
   
   
4. My empathy. Spending time with my son, my mother and my new family. Also in here I put completing my CEU's to maintain my MFT license.
   
   
5. Making Money. Selling our unwanted stuff on eBay and maybe starting a support group of some kind. Getting back to working one or two days a week.

To accomplish my goals I need to be committed. Dedication and focus is what I need right now. Because there will always be more laundry and I don't need mac n' cheese.

I rebuke you Satan! 

Things in the way (AKA: LIFE!)

Life will always throw distractions in the way. Unfortunately I'm part bird, so I'm easily distracted by the shiny and new. I'd much rather play on my Instagram gardening page apparently then focus on the really important.

My hobby - rescuing plants from our local dumpster. 
It's so rewarding!

In fact I've been feeling SO incredibly distracted lately that I had to sit myself down and make a list. Here it is. It's called "What Matters to Me."

• ·     Money back from old gym
• ·     Re-Join new gym
• ·     Lose weight
• ·     Do Yoga again
• ·     Sell the eBay stuff to make trip money
• ·     Re-activate my MFT license (take needed CEU’s)
• ·     Help Papa get into VA home
• ·     Stay on budget

That last one is rough. I'm not known for keeping a close eye on my budget. Especially with the cost of everything rising 20% recently. But I want my husband to be able to retire as soon as possible, so this needs to become important to me. 

I will always make time for art.
My latest ceramic piece. A little garden Goddess.

Getting rid of things I'm not using and letting them go to people who will love and use them is why I'm selling some belongings on eBay. It makes me feel good that something I'm just holding onto will instead be important to someone else. I'm happy there's a way I can do that and also make a little money. That matters to me.

I miss my old gym terribly. Luckily so does my mother. It's going to be hard for me to get my money out of them. Sadly I can't afford both the new membership and for the old gym to keep my money (see "stay on budget.") Good thing I'm not terrible at getting what I want. I hope I don't have to escalate things with them though. That takes time and energy I'd rather spend at the gym.

Margo and Max will also always get my time and attention.

In fact, they get the most of it.

My two toddlers.

In the meantime there's nothing stopping me from doing Yoga (other than myself.) I managed to do "Chair Yoga" once this week. I'm going to do it again today. I did it along with a video I found on YouTube for people with Cancer. It was excellent. Just what I needed to get me back into Yoga without injury or too much pain.

Next Sunday my mother and I are going back to Oregon to get my grandfather and move him back to California. He's no longer able to live independently and his rent is going up again to a place where he can't afford it anymore. He does not want to go, so we have a battle on our hands. It won't be a "jolly time had by all at the beach." But family matters to me a lot, so there we have it. It will also take as many people as possible to help my Papa through this very hard time in his life. Transitioning to a home.

So there we have it. What matters to me and where I need to be focusing my time. Not that I still won't spend some time on the "shiny" and "new." But these can still be my anchors of attention.

Alone Time

The first time I shopped alone for fun since I can remember!

How important is "alone time?" I think it varies from person to person. As a creative soul I've always craved a lot of alone time. That's something I didn't get much of when I was very ill. I was always at the doctors, asleep or with someone. It doesn't count when you're asleep by the way.

Now that I'm managing my diseases I still don't have much alone time. It seems I'm always with my husband, adult son or mother. My husband only works away from home two days a week. There almost always seems to be something to do on one or both of those days. A medical appointment or gathering or some kind that leaves me "not alone." 

When I am alone I am very good at filling my time with "busy work." Things that need to get done but usually aren't important. Laundry, watering the garden, walking the dogs, that kind of thing. Day-to-Day tasks. Not making art or working on my CEU's. I can fill days and days of time this way. Making medical appointments is a particular specialty of mine.

As someone who has never lived alone I'm pretty used to be around others constantly. Kids of course are rarely alone, so I didn't have too much time by myself even though I'm an only child. There were always friends over, parents around, grandparents, other kids, teachers, classrooms full of kids... you get the picture. 

Solitude is welcome. I'm working on practicing savoring my alone time more and making the most of it.

Changes

 One year ago...

• I only had one dog
• I loved all plants and gardening constantly
• I wasn't that great at ceramics
• I used a wheelchair
• I had no energy
• I slept a ton every single day

But in 2024

• I'm for sure over gardening outside
• I paired down my houseplant collection
• I often go a whole day without a nap
• I can do many many things in one day
• I walk my TWO DOGS on my own two feet frequently
• I'm getting better at ceramics
• I'm enjoying my hobbies now that I have more energy

I still enjoy a garden. Just not really the "doing" part. This year I went with flowers vs food. I enjoy watching the nature. Our bees and butterflies are very happy.

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.

Still Healing

I've been doing Yoga at home and a little bit of meditation lately. As in the last two weeks or so. My special room came along wonderful and is almost complete. It's a great space to do those things in, with my dogs staring at me of course. But that's much better than leaving them for the gym. Although I digress...

My point is that while I was meditating this morning I was trying to open myself up with my mind. Explore my body and see where the tension and pain is and what's causing it. I noticed that I felt very raw inside. Like an M&M but instead of chocolate I am a big, open, void of pain. That really shocked me. I leaned in even more to that feeling and saw it stemmed from the last five years of my disability being so serious. 

My loves, Margo (left) and Max (in the orange shirt)

I tend to gloss over things and move on to the next, on to the next. I tell myself that I sat with feelings and experiences but I think that's often a lie. I'm great at helping others sit with their feelings, but garbage at doing it myself. No shocker there. "Do as I say, not as I do."

I realized when really listening to that void that I am still healing from that experience. Of course I am. It has only been five months! That's what I would tell a client. "Of course you are! Hardly any time has passed at all!"

I've gone from not being able to walk around our neighborhood block to doing it while walking one dog and carrying another (poor sick Max) in a sling. All in five months. That's nothing short of miraculous.

Margo with her favorite toy

But what of all the other things that I can't see. That I'm "glossing over." All the time spent asleep. Those lost hours. Time spent not engaging with the world in the way that I'm used to. Energy spent on mobility challenges. The pain all of that caused both mental and physical. The impact it had on my relationships. On my husband, mother and son. I'm still feeling that.

I like meditation because it's a time to pause and really open myself up. I'm a person who needs time and space for that. 

Yoga makes me stronger and more flexible. But it also puts me in touch with my body. With my pain. And lets me know my limits right then and there.

Together both help me explore this new body of mine with love and intention. It's something I desperately need.

Sleeping Beauty

What a Difference!

 A few days ago we had our holiday open house. The last one we did in 2021, two years ago. Here's me in 2023 (left) and 2021...

Even though I look happy in both and am smiling in both, I look a little weary and fatigued in the right one. And it's not just the natural hair. Although after seeing these picture I don't think I'll ever have anything other than black hair again.

I'm close to the same weight. My makeup is similar. But as my mom likes to say "You look about 20 years younger!" I feel about 30 years younger.

I'm savoring this Christmas season. All the bustle and time spent with family and friends. I've also been very creative this season. Doing pottery, making crafts to decorate my house, drawing on wrapped gifts. Even though we've been incredibly busy I've made time to rest too.

My husband even went with me to Yoga yesterday. He said he can see why it's so helpful for me.

What a difference two years, one year, five months, one day makes. I'm so happy to have my time back.

Frustrations

I'm frustrated.

I absolutely hate being on the phone doing nonsense things that I've done a million times. I'm looking at you wheelchair company and medical supply company. Those two are the worst!

Fortunately since my last wheelchair appointment she has been behaving like a dream. But I still have a part on order that needs to be replaced and it has been a month.

Then there's trying to get my money back from the muffler accident. That's been a lot of fun. Three e-mails and one phone call today. 

Plus I spent 80 minutes on the phone with my medical supply company only to be told that they never got the new scripts for my medical supplies that I've been trying to get for the last five months. If I relied on them for colostomy supplies I'd be using Ziplock baggies. They are awful.

Who runs these for-profit companies?

How can they get away with treating their clients like this?

How are there not more alternative?

What a massive racket all of this is!

It costs a fortune to be disabled. Both in money and in time.

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.

All in a year

I started this blog just a tiny bit over a year ago. Reading my first post I shook my head in disbelief at all that's happened since I wrote that. I had no answers at the time. I just knew that something was very wrong with my body and I was struggling to get the help that I needed. Oh how right I was! And luckily for me that help did come. 

A year ago I said "my body just decided not to be doing so well"  that could have been the biggest understatement of my life. In fact I'm sure it was. What was really going on was: 1) I had a benign meningioma brain tumor growing in my left temporal lobe. 2) I have Rheumatoid Arthritis. 3) I have a genetic disease called Metabolic Myopathy. Soon after that post my muscles would begin failing me and it remained a mystery till November just what was going on. 

Reading over my frustrations, anger, hope, struggles and yes... fears I feel nothing but empathy for myself. Frankly I still can't believe that I went through brain surgery just seven months ago and have metal plates and screws in my skull. It's hard for me to wrap my mind around (pun intended.) Or that I'm technically also a mutant with my mutated genes causing the metabolic myopathy. I mean really? Was the TB just not a big enough of a deal?

I still feel like if people knew the whole story of what I've been through in the last four years they would think I was making it up. It's just too fantastic that someone can go through everything I've been through health wise. I fear they would think I'm faking it or lying. But it's all true. And I'm still here.

That's the best part. I'm honestly happier than I was four years ago. I'm also a better person. I'm less judgemental, more fearless, more forgiving, more patient and more empathetic than I was four years ago. I think great suffering is like that. Either you give in and struggle in the darkness full of fear for your life or you embrace the wonder that is our time here. See the miracles all around and love till your heart just can't love anymore. I chose the second one. 

I have my family, I have my tools, I have my spirit and my body is still here doing the best that it can each day. That's pretty magical really. I'm one lucky woman!