The Other Thing...

Mitochondrial Disease and Migraines take up such a huge part of my life, my time, money, resources and attention that it's easy for me to dismiss other things going wrong with my body. That troublesome hip. The ankle that wants to roll. And my ear that plugs up each time a storm rolls in.

I've had Eustacian Tube Dysfunction for about 10 years now. However, it is progressively becoming more of a problem. Any time I have a change in altitude or barometric pressure my right ear plugs up and refuses to un-plug without drugs. Often it becomes infected and I'll require a course of antibiotics. Obviously I have to go to Urgent Care to get the help to fix it. The last time I went they told me I really should see a specialist.

Fine... They were right. 

I scheduled an appointment with my ENT. It went very well. Even if the scale must be broken because no way can I weigh that much today.

We went over my options to treat this ongoing issue and settled on surgery. There's a brand new procedure they've been doing for only a few years. It has a 65% chance of success. I'll take it over a tube in my ear.

The other thing that has popped up is a tumor on my right boob. Seriously. I always have issues on the right side of my body. It showed up in my recent mammogram waving "Hi" with its 3mm body. I have to go back in two weeks for a second more detailed scan.

Bodies are just like houses. It's always one thing or another. At least my sink isn't leaking (yet!)

My Job is Me

Have you ever wished "If only I had the time to focus on myself and get into shape." I used to wish that constantly. I thought if I "only had the time" then I would be so incredibly strong and healthy. Well... now is that time for me.

My mom and I are going to be joining a gym. It's a bit of a trek away, but totally worth it. It's beautiful and it has everything. Everything we both need to become the strong warrior women we want to be. So NOW is my time. The time for me to focus on myself, my body and my health. To shape myself into the incredibly strong woman I want to be. 

Stay tuned for my progress...

The first week of the rest of my life

The first day of the rest of my life. The first hour, minute, second. Right this moment is the only moment that will ever be. Knowing that makes it easier for me to make this moment count. Who do I want to be right now? My answer is someone strong, resilient, who learns from the past. Someone who knows what I want my future to look like. At least a little bit. A future I prefer… how’s that?

In my future I would like to be healthy. I would love to get to sell my wheelchair van and my wheelchairs. I would be giddy if I could have enough energy and strength to walk. So in the present moment I’m going to do everything I can to give that possible outcome a chance.

Since July 26^th I have been eating to set myself up for success. Tons of fruits, vegetables, whole grains and beans. A little feta and goat cheese here and there. Lean chicken breast and oat milk in my coffee. I’ve also cut down my portion sizes to what is supposed to be “single serving” or close to it.

I’m very happy to share that I’ve been feeling much more energetic. I woke up at 7:30AM this morning. Something unheard of before. And Friday not only was I able to be out all day, but I didn’t take an afternoon rest.

When I have been resting it has been much shorter too. Yesterday was only an hour.

I’m feeling a bit clearer headed. My physical stamina feels vastly improved. I’m doing  a lot more that’s physical during the day. I’m also still gently pushing myself.

I’m excited and hopeful each second that I’m able to feel good. My pain in general is less, I think due to swimming a minimum of three days a week.

I’m so happy to have had some potential answers and to have the strength to make these good choices for myself. No pizza on the planet tastes as good as walking feels.

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.

What I Can Control

There's so much about my body that I can't control. I have no say over my pain, migraines, dizziness, cramps, spasms, blurred vision, brain fog, fatigue... well... anything. There are some things that I can control however. One of them is my dental health.

No control

I have always been afraid of the dentist. I remember being very young and having a dentist literally lay his arm across my face as he worked on me. Another had the worst breath you can imagine that he breathed right on my face for what felt like hours as he inflicted nothing but pain. I thought intense pain was just part of the dental deal and all dentists were sick sadists.

As an older adult I finally found a good one. Though good dentists always seemed to hire evil hygienists who were awful. So it was common for me to go years and years with no dental care. 

I swore 2020 would be my year to get caught up on my dental care. I had finally found a good dentist who had been gentle with my son, so I thought I might be in ok hands. 

Let's Go!

Luckily I was right about the new dentist and everything went well. I'm now all caught up and can just keep up with my cleanings instead of needing expensive, painful work done. And he made sure it didn't hurt! YAY! I met my goal of catching up on my dental care this year and I feel really proud about that.

Now I'm on a roll and am working on getting a whiter smile with just those white strips you can buy. I like my fangs and crooked smile, but want them to be nice and clean looking. That's something I can fix and control.

Thriving

What is the difference between surviving and thriving? 

I asked myself today "Am I going day to day surviving? Or am I thriving?" The answer is complicated.

First I turned to the all knowing oracle of our times. Google. I think it's fun to ask deep questions and see what pops up. Much like a Magic 8 Ball. "Oooooooh all knowing Google. What lies at the depths of this question..." (((SHAKE SHAKE)))

Surprisingly Google had a good answer. Or make that Empowerwomen.org had a good answer. Although one I don't 100% agree with. "Surviving is doing what is necessary to live." I agree with that part. "A thriving mindset is defined by continually challenging oneself." I'm not sure about that.

To me personally the big difference isn't in challenging myself, but in growth. Surviving is making it from one day to the next intact. I for sure have my survival days. I know I'm not alone. I think of all the people across the world who are simply surviving right now.

However, Like Viktor Frankl I believe it is possible to thrive in any condition, no matter how hard, oppressive and awful. Most days I feel like I am thriving. I'm continually attempting to better myself. Better my health, my mind, my attitude, my relationships with loved ones, my body, my home... Thriving to me personally is a continual growing process into a better and better Antoinette. 

A kinder me who is as healthy as I can be, softer with my words, respectful of others, spending my time on important things, giving people (and pooches) my love, actively listening to others... all of these are things that make me feel like I thrive.

It doesn't have to be travel or a paycheck. I don't have to save lives or run a marathon. I just have to do my best and be my best. I am growing, flourishing, expanding into my own human potential. And I feel like most days I am thriving.

I AM

When I became disabled I had a very hard time not comparing myself to my "old" able self. It was constant. If I spent time in the garden watering I would tell myself "Well, you USED TO be able to be out here for hours". See what I mean? Comparisons.

Nothing good ever comes from looking behind. It has taken me a very long time but I feel a shift. I think I finally moved past comparing myself to what I used to be able to do. It has been a huge liberation!

I can't pinpoint what caused it. I've been aware of how damaging it is and unhelpful, but I just couldn't stop it. It literally had tentacled its way into every aspect of my life... just like my disability. But unlike my disability it is something I can control.

What helps is being mindful. Fully present in each moment as they come. Not having judgement on my life and what I can and can't do. Just enjoying it for what it is. Once I made that shift in thinking, I was FREE! Free to enjoy my life and each moment as they came. 

So now I AM a person who:

• Can ask for help
• Lets others help me
• Does my best and lets it rest
• Is MUCH happier
• Is seeing the beauty all around me
• Is more confident
• Is less judgmental of others
• Has a lighter heart

Time out for me

When you're chronically ill and disabled it's easy for all your time to get sucked into your disability and YOU become secondary. It's your disability that comes first. You are a "disabled woman" not a "woman with a disability". There actually is a very big difference between those two phrases. One puts the person first and the other puts the disability first.

Doctor's appointments, picking up medications, fighting for modifications and DME (I hope you never need to know what that stands for but in case you don't know it means durable medical equipment). It's easy for ME to get lost. So lately I've been trying to really put my self first. It hasn't been easy. One way I've been doing that (and it will sound stupid) is with my teeth.

Having had a brain tumor has made me terrified to go to the dentist. I'm scared of getting x-rays of my head and that the drill will hurt my plates and maybe make a screw come loose. I'm pretty positive these fears are irrational. I have a good dentist who sees my family and who knows about my brain surgery. They've agreed to make accommodations and do whatever I need to make me comfortable. 

So I've been brushing twice a day (I used to never brush in the mornings) and I bought a water pick that I've been using at night. I'm trying to take better care of my teeth leading up to my appointment (and noooo, not just the day before thank you very much!)

The other thing I'm doing is trying to take very good care of my skin. And I was rewarded with yet another fever blister. My second in a single month. I think something is going on with my immune system. -sigh-

One way I take care of my skin is I rarely wear makeup. Like maybe once a week. What do you think. Better with, or without?

Weirdly enough I think my eyes pop more without makeup. Strange! Though I do like covering up my old fever blister scar more with makeup. 

But I think it's not makeup that makes one attractive but an authentic smile. Don't you? One that comes from deep down after taking time out to see friends or family after an afternoon of taking good care of yourself. 

Painsomnia

Painsomnia is when you're in too much pain to sleep. I've had a nasty head cold lately (and a beauty of a cold sore) and when I'm sick my body pain level usually skyrockets. The last few nights I've been in bed trying everything I can to get to sleep. Night time cold medicine, Ibuprofen PM... nothing seems to help.

When my pain gets this bad I usually just try and distract myself into a state of ultra sleepiness by messing around on my iPhone. Pinterest is my go-to. I found myself doing some last minute Christmas shopping last night. "Design Home" is my favorite app. I've played it for years. I find it relaxing and a fun way to unwind. 

If I'm getting busy brain or feeling worried looking at animal "pins" or humor is helpful. Baby animals cure everything. 

My sweet girl is also helpful. 

I can't force sleep. She will come when she's ready. Bottom line is I'm lucky to not have to get up and go to work on only a few hours sleep. It really screws me up. If I'm up late with painsomnia I feel super dizzy and foggy headed the next day. I will also likely have a migraine. 

I'm lucky not to have this happen every night, but it does seem to happen back to back nights when it does come up. Being sick with a bug is almost always a guarantee that it will happen. It also seriously affects my mood. Bah Humbug!

What's Working (and what isn't)

I've been challenged with chronic illness for a while now. If you go all the way back to when I contracted Latent Tuberculosis then it has been four years (2015-2019). My mother recently asked me if the time before I struggled with health was 100% for me, what percent would I be at right now. I told her 10%. For me my 100% wasn't very long ago, in fact I can remember it like yesterday if I let myself, but file that one under "things that don't help me". Should we start there? Yes, let's...

A favorite smell to spray on my bed - that works!

What Doesn't Work:

1. Dwelling on the past. Even visiting it briefly really. Ditch that mental train to the past and stay in the present or very near future.
2. Pushing myself too hard physically. I went through an understandable phase of trying to push myself as hard as I could every day. That just led to exhaustion and me feeling much worse quickly. Plus it gives others the false impression that I'm able to do more than I really can. "Invisible illness". They can't see what it costs you to over-push. This also goes for not resting enough, not using my mobility tools and trying to have sex at the wrong time of day. Pushing gently but checking in with myself frequently is what works best for me. 
3. Comparing myself. It could be comparing myself to others, or to "normal" people, or even to what I used to be able to do. I am myself here and now and that is all I need. 
4. Fixating on symptoms. Research is good and I am the expert in my own body, but it's a fine line between research and fixation. A VERY fine line that I know I've crossed in the past. My condition is rare and to me that means I have to be diligent on research. But that research can lead to me over-reacting if I don't watch it. 
5. Living too much in the moment. Planning is very helpful for me. Making a meal menu, preparing food ahead of time (my husband does a lot of that), reviewing my week, figuring out how I'm getting to appointments and who is taking me. If I'm too much "in the moment" I won't do any of that. For right now I'm still able to and I find it useful.
6. Disconnecting from my body. It's easy for me to just go on auto and completely un plug my body from my brain. Scary easy. But then I end up doing something stupid, over-doing it or just not realizing how I'm feeling. Not good. Doing things like shaving (if I feel like it) henna coloring my hair, getting a haircut, giving myself a manicure (still can!) All of these things help me re-connect to my body which is incredibly important. 
7. Eating crap. I crave junk food and really love it, but I know it's horrible for me and makes me feel terrible. Eating anything processed is terrible for me. I honestly try to eat whole, real food as much as I can. Homemade yogurt smoothies with honey, frozen berries and flax, homemade beans, fresh fruits and vegetables, gluten free foods, etc. But it's a struggle because I'm a whore for Taco Bell. 
8. Drinking alcohol. Any kind of alcohol really will just flare my pain. Plus I already feel about 3 drinks drunk all of the time anyway. So I don't need it, but I do miss it socially. Like eating crap I know if I drink alcohol I just made myself intentionally feel worse. 
9. Giving up on the medical industry. Treating my chronic illness requires a fine balance between my medical team and complimentary interventions like vitamins, eating well and resting. I've had many times where I just scream "f*&@ this shit!" And never come back to any doctor again (like after that spinal tap by Dougie Houser.) But I also know that although understandable, it's not in my best interest. So I go again and again and again.
10. Keeping my struggles to myself. There was a time when I didn't have this blog, or tell my husband ALL of my symptoms, or let anyone know how much I was suffering. At one point my neuropathy was so bad that I was up for hours each night crying because of the pain. But still I went to school the next day (and got all A's by the way.) But keeping people out and suffering alone doesn't work for me. It leads to loneliness, depression and is a strain on my relationships. 

Noticing nature - that works!

What's Working (*Today):

1. Being around family as much as I can. Instead of pushing people away I now try to let them in with heart wide open.
2. Keeping everyone I love informed about my health. If I learn something new about my condition I try and share it. And not just with my husband, but with my son and other family too.
3. Asking for help. I used to be horrible about this, but TB made me change my ways. I now never hesitate to ask for help (although I do like to try and do things myself first.) 
4. Saying "no" even to the people I love most. I'm the only one who knows how much energy I have and what I can and can't do. So it's up to me to let people know when I simply can't do something. Especially when I need to rest. 
5. Making my health a priority. Not work, not my son, but my health. If I want to be there for others then I have to take care of myself first. This is also something that took me a long time to start doing because I get a lot out of helping other people. Heck! It's what I went to school for 10 years to do!
6. Keeping hope and an open mind. It's very easy to lose hope in my situation. Struggling with something rare, that's a moving target is a real challenge to treat. But there are hopeful clinicians out there and I'm lucky enough to have found a few. I also have a very hopeful family and that's awesome.
7. Caring for myself in every way I can. So yes I try to care for my body. Wear the right shoes for stability and support, take my medications when I need to. But I also try and take care of my mind. Connect with people I love, write a blog, read a book, fart off on Pinterest... These are all ways I take care of myself. Oooo! And I'm becoming an avid collector of soft lounge clothes. And did I mention my adorable new pink purse?
8. Savoring the moment. Not getting too far ahead or behind the time. Noticing the hummingbirds outside my window, a perfect dandelion as I roll with my dog, her sweet breath as she sleeps. All these precious moments would be easy to ignore, but by noticing them I'm keeping myself mentally well and grounded in the present. 
9. Stressing patience. I used to be a very impatient person. But when I have a three month wait till I see my neurologist again, I had to learn how to be patient. If not I'd go insane. So I learned how to breathe, relax away that tension and release those expectations. 
10. Expanding my identity. My job was a huge part of my identity. Losing that was a big blow. As I told my family the other day "I lost my job and the ability to drive in the same week". Considering I've been driving for 30 years, that was a big loss too! So the best way to help myself with that loss is to explore new identities. I used to do art so much that I considered it a big piece of my identity. I lost that when I took on "student". Same with "writer". These are two that I can re-claim. When I was working full time I couldn't garden as much. Now I can do a little and it's something I enjoy. I'm enjoying the process and it makes the loss of my other identities sting a little less. 

A nap with my girl - always works!

Plan Kick Ass - Day to Day

"What's going on with Plan Kick Ass?" I'm glad you asked! It has been a little over a month since I did an update. Here's how things stand. 

Food is good.

I don't always have the spoons to make stuff from scratch.

Tomorrow is another day.

Here's the areas I'm doing well at. Eating fresh and local I think I have down. I'm also eating much more veg than I was! I make a smoothie when I can (like I need to make one today). I'm stretching at least once a day, typically a few times. I have "naps" down solid and I really reduced my work week. Ha ha.  

Bruce is a napping PRO!

I've been asking for help when I need it, but my husband and mother usually want to do things for me before I ask. That makes me stubborn and actually LESS likely to ask for help. I need to talk to the two of them about that. 

I live in a food oasis where we have tons of fresh, local, delicious food constantly available. And let's face it. Food and eating it makes me happy and I need a lot of "happy makers" right now.

Our beautiful Farmer's Market on Saturdays

Roasted fall veg (that my husband wouldn't touch)

Here's where I'd still like to improve.

• Eat smaller portions.
• Eat more seafood
• Eat less sugar (No, it doesn't help. That was a fluke day)
• Eat less dairy
• Back to no soda (As soon as I finish my last Ginger Ale)
  

Most things I try (power drinks, sugar, Magnesium, etc...) seem to work great for a little bit, then taper off. So I'm not doing the power drinks regularly because there's just too much crap in them for what little I get back anymore. 

Roasted chicken (that my husband enjoyed)

On the medical side my doctor is sending me to an ENT to rule out any vestibular causes for my dizziness. I'm willing to try anything because not being able to drive BLOWS!

The in-between times

So much of having a chronic illness is waiting. Some people wait for surgery or chemo treatments. I wait for brain MRI's, doctors appointments and testing.

But my life can't just be ALL about my illness(s). So what about the in-between times? In-between the doctors appointments, medical testing, waiting, symptoms trying to take over... what do I do then? 

Well, one of the things I like to do is keep up on my henna head. This time I went to my mom's hotel room and she did it for me. It was much easier than getting all the little spots myself and it came out lovely. 

Another thing I do a lot of (as much as I can really) is rest. I try and nap every day. Usually between two and three and a half hours. And no. It never effects my night time sleep. I sleep like a rock (usually). Aside from my puppy I also snuggle my giant stuffed shark "Bruce" and of course, my husband. 

I also find small things to lift my spirits. Having bright fingernails is one of those things I like to do. I used to have a tradition of painting my nails in a sparkle polish before any big test. I used to tell people "It's impossible to feel stressed with sparkly fairy nails!" That's a motto I still hold to.

On that note, I'm going to take a nap and paint my nails.

Next up... "Plan Kick Ass" update. 

Prepping for the week

Meal shopping and prepping is something my husband and I (mostly) do together. Our town has a magnificent farmer's market that we try to go to on Saturday mornings. We stock up on eggs, fresh fruits and veg and occasionally cheese and meat there. 

I try to be careful where my dairy and meat is sourced from and there's a fantastic Scottish family farmer that we love. His eggs are beyond compare, each one tasting like golden love. (I received no kick back for this endorsement, but wouldn't say no to some free eggs.)

My husband has taken to doing almost all the meal prep for the week. He'll fill up all our water jugs then sauté up a giant batch of peppers and onions. We use them on almost anything, but have especially been enjoying veggie fajitas. 



I try and boil eggs for the week (for a work snack) and prepare my lunches ahead of time. This week is a delicious veggie, gluten free pasta salad with fresh herbs and veg from our trip to the farmers market. Delicious! (please read this in the voice of Gordon Ramsay.)

Hummus, bananas and yogurt are also a must have for the week. 

Aside from all this delicious grab-and-go food I like to make sure I'm also mentally prepared for the week. My job is very intense, emotionally charged and can be draining, so every little thing I can do to relax and re-set is very helpful. This means having clean clothes, taking a big nap, not taking on any big activities and feeling physically ready. 

Sometimes that looks like giving myself a facial or taking a bath (if my muscles are doing well enough to get in and out of the tub like that.) This week I got my nails done in a fun "out there" style that I've never done before.

Dragon Eye Nails

My husband and I also come up with a meal plan so we know what to make when we're tired and groggy after a long day. We try and cook together, but some nights all I can manage is keeping him company while he cooks. Just like with grocery shopping. We occasionally go together, but other days (like today) he runs off with a list we made to do the leg work.

I'm adjusting slowly to doing what I can when I can and saving energy for the really important things. It still isn't easy. But having bitchen nails does help.

Don't make the same mistakes

This is Plan Kick Ass - Phase 3 for a reason. My body has undergone a lot of drastic changes during this last year (even not including my brain tumor.) But I also have some tendencies that I'm trying hard to watch out for this time because they did not serve me well in the past.

1) OBSESSING about food. I'm totally an all or nothing type of person (something I'm working on.) In the past I have used food tracking apps. And I don't just USE them, but I over use them. Photographing and tracking everything that goes past my lips. This is a time suck and it has never helped me keep weight off.

Wait, Did I just eat 4 almonds or 6. DAMN!

2) OVER exercising. I actually caught myself yesterday thinking "Maybe I should get a personal trainer or try CrossFit?" Whooooo girl. Reign it in! It's one thing to "gently" push myself, it's another to go too fast and cause an injury, or a well intentioned death by tire flipping. Too much too soon.

Go rest girl

3) Trying too many things all at once. This is an easy one to fall into for me. I get super motivated for change and instead of trying one new thing at a time I do 50. I already was tempted by this one after reading about food that helps with muscle strength. I also read about needing large amounts of Folic Acid and Omegas. I though "I should go get some of those and give it a try." Note, not ONE... but THOSE... meaning all at once. "If one change is good surely 50 is even better?" Maybe, but it's also a) Expensive (and I need to save money now that I'm not working as much. And b) You can't tell WHAT it is that's helping/working when you're trying so much all at the same time. 

One change at a time

Now that I'm aware of these pitfalls I hope to avoid them moving forward. I'll likely pick up some Omegas soon to go along with my "more fish" diet. But that's easy to track.

Today's physical plan is to walk my Sweet girl again then see how I feel. If I'm up to it I'll also do some gardening. Then it's rest, rest, rest.

Plans for 2019

I tend to keep a journal off and on. It's not a traditional "Dear Diary' type. More of doodles, lists, feelings, thoughts and plans. I like to go back and re-read them at times to see how much I've grown. This entry from 2017 really stood out to me and I found it share worthy.

I was still in graduate school at the time. This is a good snapshot of what chronic illness feels like. I wouldn't wish it on my worst enemy.

Here are the "goals" that I have been setting for myself through the years. I notice I didn't do it last year. I think that's because I had just graduated and felt I had enough to focus on with my job hunt.

More here about "Beginners Mind" if you're curious. 

"UPR" is a psychological term that means Unconditional Positive Regard.

On January 2018 I deleted my Facebook account. 

It took about an hour and a lot of Googling to figure out how to do it. Facebook is like that crazy ex who doesn't want you to go, peering through your window, hoping you'll change your mind. I can say with all honesty it was the best thing I could have done for my mental health. I was very much addicted to it (though less than most people I know.) I encourage everyone to engage in as little social networking as possible and spend that time deeply engaging with people in the real world.