Taking Matters Into My Capable Hands

My very first blog post ever here was about "Plan Kick Ass." It was what I called a plan to rid all toxins from my diet and radically change my habits for the better. It has come and gone through the years. Typically with food addiction taking the drivers seat and veering me back into old habits. 

My dinner the other night. Cheese tortellini with gorgonzola alfredo sauce and roasted broccoli. It was even more delicious than it looks.

Cheese, butter, sweets, carbs... are all very hard for me to resist. Eight years later I'm ready to try again. But this time I have AI to help me.

With the help of Hal (what I call Copilot on my phone) I made a complete list of all the foods that are the very best for mitochondrial health. I then formed a meal plan around those foods. It is a complete, Vegan, protein and antioxidant heavy diet. No animal products at all. 

Matcha tea instead of coffee every morning.

What it also lacks are replacement foods. No Earth Balance instead of butter. No Impossible Beef instead of burger. And sadly, not even some fake buffalo "chicken" instead of real chicken on my salad. Nope. Whole grains, beans, fruits and vegetables. The closest thing I get to eating anything "fun" is dark chocolate. This... is... going... to... be... hard.

My research added to my 2026 journal.

BUT. If it will help me lose some weight to help my strength and mobility. Heal my mitochondria and allow me to have more stamina and less fatigue? Well... There's very little I wouldn't do for that.

First comes food. Then hopefully if I'm feeling stronger and more energetic I can increase my activity. Keep your fingers crossed for me. Welcome to 2026. My body won't know what hit it. 

Happy New Year!

Food Addiction

It's very hard for me to pinpoint when food became my drug of choice. It wasn't always so for me. I think it was when my son was first getting diagnosed with Autism and my husband was working incredibly long hours. That feels right. 

When hard things happen to people it's common to form an addiction to cope with the stress. Drinking, drugs, gambling, sex/porn and food can all become addictions. But food is the hardest one to overcome because we can never just stop eating.

Cheers to not over eating. 

Enough "we" and back to "I." I struggle with portion control, eating too infrequently and choosing high calorie foods. I adore fast food, even though I don't have it that often (for an American.) I would happily eat two box's of macaroni and cheese for dinner every night if I just let myself totally indulge. 

A dream day of eating for me with no consequences would be doughnuts for breakfast, Taco Bell for lunch and mac n' cheese for dinner with some kind of pie or brownie for dessert. (((GASP!))) Just awful.

I never really had a big sweet tooth until recently. Sugar is absolutely a drug. The more I have the more I want. I think about what I'm going to eat next while I'm eating. I love to watch cooking shows while I eat so I can watch other people eating too. I'm incredibly suggestive to food. If someone even says something like "ice cream" then I'll want it terribly.

This is hard, serious work.

My "serious" face.

I've been fighting my food addiction for about 25 years now. I do well for a little bit, then go right back to what I was doing. The wonderful thing about overcoming something is that you never run out of chances (while you're alive of course. Then, game over.) I don't want to lose weight to conform to some kind of idea of what I should look like. I want to lose weight to hopefully lesson my pain. And because being strong feels really good.

Many members of my family also have food addiction issues. About three generations worth. Those who didn't had other addictions. Is being addicted to something part of being human? Are we just unable to resist temptation? What is that about?

Here's what I did TODAY to help myself and heal myself rather than hurt myself.

• I used my new food tracking app.
• I put my FitBit back on.
• I walked the dogs.
• I played with my dogs.
• I ate thoughtfully and carefully.
• I ate when I was hungry.
• I made a healthy dinner this morning so it's all ready for us. 
• I bought some healthy snacks to try.
• I wrote about my thoughts and feelings.

I know how to feed my dogs.

But it's much harder when it comes to me.

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

All Is Well and As It Should Be

Well... We found out today that Margo is NOT PREGNANT! There will be no puppies taking over my life. I was shocked and relieved. Although we would have taken care of her and them, bypassing that gooey experience doesn't leave me wanting. I'm thrilled to just have Margo.

She arrived last night around 8:15PM. She slept with us in our bed all night. She's a very inquisitive girl who speaks her mind. 

We also found out she's somewhere between 3 and 5. They can't tell exactly, but young. Much younger than Max who is around 8. 

So now I have a big chunk of my future back. Remember what I just said about not having a hold on the future. Well this just echos that now doesn't it.

Max and Margo are getting along very well, which pleases me. I think it's only a matter of time before they play and cuddle. Thank goodness Margo has a tail or it would be hard to tell them apart at a quick glance.

Margo (on the left) and Max guarding the house.

Max is showing some signs of jealousy, but that's to be expected. We're doing all that we can to make him still feel special. But thank goodness there's no need to buy him an "I'm the step-Dad" t-shirt.

Let's Play It By Ear

 "Let's play it by ear" is the warrior cry of the chronically ill. It is an enormous challenge to plan life in advance as I never know how I'm going to be feeling from one moment to the next. With this comes a lot of guilt.

I feel guilty for making my husband miss out on having people over as much as maybe he'd like. Guilty about not going to friends homes as often as I'd like. Guilty for turning down fun invitations to places because I'm too exhausted to go, or the time of day is wrong (it's during "rest time") or the location isn't accessible. 

I feel guilty not being able to spend a full day away from home and making everyone have to come back home early so I can rest. I feel guilty spending a whole day sleeping after doing something exhausting. Guilty for not helping my mom and son out as much as I'd like to. Guilt also comes when I can't do something myself and I need help. 

Behind all of this "guilt" is a great, big, SHOULD.

I SHOULD be able to make it all day long without a rest.
I SHOULD be able to go to someone's house to visit for hours.
I SHOULD be able to travel.
I SHOULD be able to make plans and stick to them.
I SHOULD be able to get up and get on with my day in a productive way.
I SHOULD be able to help others.

But none of these SHOULD's should be here at all. Because of "can't." I am a disabled person unable to do these things. That is the reality of the situation. I can want to. Even feel like I "should." But I can't. So I don't. 

So instead we "play it by ear." Adjust when we need to. Do what I can and skip what I can't. Adjust our plans (or cancel them) and work around my needs. That's the fact of life right now. No need to guilt myself about it or "should all over myself." None of these feelings are helpful or healthy.

It is helpful to remind myself of that when the guilt starts to creep up.

February - Where I'm at

I'm not kidding when I say I'm a full time patient. In one day I had three medical appointments. In one of them I learned the joys of what barium in all its forms tastes like for a Barium Swallow Test. 

(And why is the woman grinning madly? Why it's because she's trying not to vomit while holding massive amounts of barium in her mouth of course!)

Don't throw up or you'll have to do it all over again!

I also got to have this lidocaine nozzle shoved up my nose before a camera tube followed. Who knew they look at your throat through your nose? Now I sure do! (Kidding, he didn't "shove". He was very gentle and I'm being dramatic because I can.)

This was the petite nozzle that went up my nose. 

Only about 4 inches.

TAH DAH! My voice box and surrounding muscles. 

See the resemblance?

The tests all went well and they found some interesting things. Myopathy that affects my voice and muscles in the back of my throat that tire just like the ones in the rest of my body. They want me to see a speech therapist to get trained in some lung exercises to help protect me from pneumonia. I asked if I could just blow bubbles and pinwheels instead and the dude didn't even crack a smile. Doctors are just too serious sometimes!

So here's medically where I'm at:

• Referral for EMST (fancy for lung stuff) through a speech therapist
• Occupational therapy for my tweaked shoulder
• Occupational therapy to maintain muscle strength (even though strength isn't my issue, it's stamina)
• March 11th is my neurologist consultation for Botox for migraines (not the actual procedure. Hold your horses Ms. rushy rush! You have to be consulted first!)
• March 19th is when my wheelchair will finally get picked up for the modifications I've been trying to get since October (a higher headrest and knee abductors)
• March 22nd I check back in with my primary care doctor about everything
• Working on getting a nebulizer for home after needing urgent care and the hospital last year for breathing issues (mostly after travel)
• My teeth are clean, but I need a few procedures, so that continues in April

But what about FUN!? What's going on that's NOT related to medicine or illness?

• I'm enjoying the new show Lego Master with my honey
• My mom and I have a blast at our weekly Trader Joe's run
• I try and take Sweetie out every day, even if it's just around the block
• Daily I sit on my shower stool and pretend to be a mermaid while in the shower
• My husband and I are going to a Capitola beach house with friends in early April for the weekend
• My mom is taking myself and my son to Monterey during his spring break (one of our most favorite places in the world!)
• I just planted a little herb garden by my door
• The nature here is already springtime beautiful! I try and get out in it as often as possible
• I painted my toes rainbow and they make me incredibly happy

Frustrated

I think that's the number one word I would use to sum up my chronic illness. "Feeling frustrated" a good majority of the time. 

A big cause of that feeling comes from the moving target of my kind of illness. I literally never know how I'm going to feel, what I can or can't do, from one second to the next. I can kindove have a plan. I can guess. I can take what I think will be preventative measures, but there's zero knowing where my body will end up.

Case in point last night. I was coming off a hard weekend where my body just needed a lot of TLC and rest. I missed out on a lot of fun things we had planned (= frustrating). Then last night something was wonky with my breathing all... night... long. Was it asthma? Allergies? My lung muscles not working? Too much dust in my room? Heck if I know. I just had a very hard time breathing and slept like crud.

I'm a problem solver by nature, so this morning I look up tips for night breathing and find my pillows are long overdue for a wash. Not the case... the pillow. And my favorite soft one that I keep by my face (along with my stuffed shark) haven't been washed in at least a year. Ok, good place to start.

Me and my buddy Bruce

Then how about using my inhaler more? I thought I already was, but can't hurt. I already have an air filter in my room, but is it positioned right? And how about that throw rug, does it need a wash? And here we have my entire day.

Now my whole Monday has gone from everything I had planned on doing to trying to make my room as "lung friendly" as possible. This is life with a chronic illness. And it is very frustrating!!!

What to Bring to The Hospital

In case you haven't picked up on this... I'm a HUGE planner. I like having a plan, I like knowing the plan, I like making a plan. It helps me to feel more in control. The less I actually have control of a situation, the more important it is for me to have a plan. Ergo, having a plan for when my brain tumor is removed is enormously important to me. 

Although I'll only be in the hospital for a night or two, what to bring for that time required some deep thought (and heavy shopping.) I found this heavy canvass bag on clearance yesterday. The color is bright, so it will be hard to forget and leave somewhere. It's also machine washable, which we'll want to do to anything that was at the hospital. The straps are thick and it's easy to carry. Well, easy for my husband to carry. It also zips shut, which is super important for the hospital.

Inside my bag are some essentials. Rubber bottom super soft slippers, body lotion (that I bought at Disneyland, so it reminds me of that fun trip we took), face wipes, baby wipes (in case I can't take an actual shower), deodorant, lip balm, sore throat drops (being intubated always leaves you with a very sore throat) and mints. I also scored some slip on shoes for under $3. Easy on and easy out the door. I'll wear them to the hospital.

Not in the picture is a super soft white blanket that I treated myself to. The blankets at the hospital are very utilitarian. It's hard for me to sleep without my "blankie" so I cleverly bought one we can bleach and wash when we get back home. Last thing I want is hospital cooties!

This is my favorite "room mister" that I spray on my pillows at night. I'm tempted to bring it to the hospital with me, but common sense dictates I'll be drugged out of my mind (literally!) and couldn't care less about such things. As important as knowing what to bring is knowing what to leave. I'll hold off on the spray and save it for when I'm back home.

What Happened to "Plan Kick Ass?"

Plan Kick Ass (or PKA as I call it) was way-sided by the introduction of Plaquenil. I stopped taking my supplements, except for Vitamin D (because my doctor recommended that one) and I didn't have the energy to make my own juice. I did however keep up with the new "chemical free" beauty products and gave all my old stuff away to good homes. I hate waste!

View from my bed

I think today I have the energy to make some fresh juice for my 10AM snack. It's not just making the juice that's so tiring. It's washing the produce well, making the juice and cleaning everything up and putting it away. Just like going grocery shopping in itself isn't the real spoon sucker. It's driving to the store, walking all over and putting stuff in the cart, chatting with the checker (or people you run into that you know), loading up the car, driving home, putting it all away. MAN! I'm tired just from listing what about it is tiring! Well, juicing is a lot like that. There's a lot of steps involved that all = exhaustion.

My other favorite place to be.
The living room couch (complete with cozy quilt.)

So like all things in my life I've learned to modify PKA. I got the handicapped parking plaque (and I've been so thankful that I did!) I'm asking for help when I really need it. I'm letting all the little things go that I used to feel I "HAD" to do every day. I'm savoring time with my husband and doggies. And I'm trying to be more patient.

I've been finding a lot of support in books. My latest find is "How to Live Well With Chronic Pain and Illness" by Toni Bernhard. I think I found this book by just putting "chronic illness" into the search engine at my library. Actually from home, then I request a hold on a book. That way I just have to run in and grab my hold stuff. That's another modification I've made.

Even though people are all so very different, it's helpful reading someone else's experience and what has worked for them. Toni is very frank in her book about her struggles, but does so in a very hopeful/helpful voice. I'm enjoying it and plan to read her first book "How to Be Sick" next.

Alright. It's snack time and I'm off to try juicing. Wish me luck!

Plan Kick Ass As of Now:

• Eat a little something every 2 hours.
• Rest and nap if I feel the need.
• Wear my compression gloves to bed at night.
• Continue being as chemical free at possible with products.
• Try to eat anti-inflammation foods.
• Take Vit. D & Magnesium daily (for muscle pain.)
• Go slow and save spoons.
• Drink lots of water and herbal tea.
• Be loving towards myself.

Take Care

I really love those two words. As long back as I can remember I sign off all my correspondence with "Take Care." It's also a motto that I'm trying to remember and heed. 

"How?" I'm glad you asked!

I'm trying to ease back into exercise and moving. I've been very sedentary this month. For good reason, but still. It's something I want to address. I feel better about my body and my mental health when I get some exercise on a regular basis. I used to do a dance type class called "Zumba" at my gym once a week. I went yesterday (the first time in a month) and did my best. The end result was that I was literally crippled the rest of the day. I WAY over did it. Something easy for me to do in that class.

Might be a better fit?

I thought that what might be a better fit right now are these two exercise videos that I found at our local Library. I read quite a bit about how Qigong and Tai Chi are both an excellent choice for RA. The other one is a hula video, which might prove to be a bit aggressive, but I'm willing to at least try. I can also swim at my gym instead.

Mmmm! Gnocchi!

Food is another key factor. I shared before that I've found a lot of relief from going gluten free. But I'm also Italian and seriously have been missing my pasta. GF pasta does a "nice try" and is better than nothing, but it's also far from the same. Fortunately I found this expensive gnocchi at my local food co-op and gave it a go. It was delicious! Maybe a bit lacking in vegetables, but hey. The sauce counts?

I'm trying to reduce my portions while still eating what I want. Food is very comforting and I don't want to deny myself comfort right now. I ate about a quarter of what you see here and put the rest away. For a while I was also making fresh fruit and vegetable juice for myself. That's something I want to get back to.

Cutting out gluten personally helped some GI issues and calmed my neuropathy down a bit. It has served me well enough to keep with it. I also live in a place where substitutes are plentiful and easy to find. 

My sleep usually stinks.

I wear my Fitibit to bed most nights. I've noticed that it's very accurate in monitoring my sleep quality. I can tell when I wake up exhausted it's usually that I didn't get enough deep sleep. And if I'm ok in the morning but want to go back to bed by 3 it's usually I didn't get enough REM sleep. These are 2 nights of sleep. One right after the other. One was short in deep sleep and the other was short in REM sleep. I seem to cycle like that.

Some things I'm going to try are:

• Not being on my phone right before bed. Read a book instead.
• Drinking Sleepy Time Extra Tea before bed.
• Make my bed regularly (I sleep better when it's clean and made.)

 The last thing I'm doing to "take care" is trying to document my health more. I started taking pictures of my feet and making my husband take pictures of my hands. I plan on doing this once a month to monitor any changes.

May 2018 hands.

Even just in this picture you can see how my right hand is a bit different from my left. It's a bit swollen in general. Even on my right foot I feel like I'm having some "toe drift" already happening. It's not something I would have noticed without taking pictures and I'll bring it up to my rheumatologist when I see her again next month.

Here's some other ways that I'm "taking care" this week:

• I'm going to watch the Royal Wedding of Prince Harry & Meghan Markle
  (*a guilty pleasure to be sure!)
• I'm going to wear my new special hat to a belated Mother's Day lunch with my son.
• I'm coloring my hair this weekend.
• I'm enjoying watching Face Off with my husband at night (the special effects makeup reality TV show.)
• I'm seeing my Aunt on Friday and we're having Mexican food together.
• I'm using my Nordic Poles when I'm too sore or stiff to walk un-aided.
• I'm using my "disabled" parking plaque when I need it. 
• I'm not stressing every little thing I'm not getting done right now.
• I'm playing a lot of my life "by ear" and "by spoons."
• I'm spending a lot of time being cozy with my dogs.