Medical Scare

 

My mom just returned home from the hospital after being there for a harrowing six days. She was vomiting and having diarrhea and couldn't eat a single thing for 15 days. It was awful. She was diagnosed with kidney stones, gallstones, an enlarged pancreas,  two small hernias, fatty liver disease, diverticulitis of the colon and a UTI. Because everything else just wasn't enough. 

This is the third time in five years she's gone to the emergency room and been admitted. Fortunately this is the first time she didn't require surgery. It was very stressful, all the unknowns and I just felt so awful for her and helpless.

At times like this I'm reminded that the one thing I can do and can control is what I'm putting in and doing with my own body. Seeing her health scares me. Being a plus size woman myself, it makes me want to try and lose some weight to hopefully avoid some of these future issues.

The good that came out of it was that I was inspired me to re-double, triple, quadruple my efforts to try and treat myself with tender loving care. Feed myself good food. Move as much as I can. Rest when I need to. Spend my time mindfully. All fantastic reminders.

In the past I've wanted lose weight for a very specific goal. A trip usually. Or special event. Then I "cheat" because I'm on vacation, it's a special holiday, we have company, there's a birthday party, etc... There always seems to be an excellent excuse to eat anything I want.

This time I'm taking it minute by minute and trying to make the best choices for myself. For my body. For my health. For my future. Rather than indulging for the "Now."

Are you a mini or a maxi?

I've been a massive maximalist most of my life. But deep down inside has always been a minimalist dying to come out.

I'm a maximalist in all ways. Spending, decorating, buying clothes for my dogs, eating, loving people. It's very easy for me to go way over the top in all areas of my life. My husband will ask me if I want something now, or later? Both is always my answer. Did I want to go on a trip for our 30th anniversary or get a nice piece of jewelry? Both of course. Would I like the appetizer or dessert? Uhhhh BOTH!

See the pattern? 

Restraint, budgeting, minimalism, living withing my means, decorating within the boarders of my walls... nope. Big no to all of that.

I'm an expert money spender!

2025 is knocking. It's the perfect time for reflection and change.

1 - I want to be much less of a consumer. Both with my wallet and my mouth.

2- I want to de-clutter my environment. Donations and Ebay selling are the best way to purge.

3- I want to be more on top of my finances. As long as I'm not working (and I don't think that's changing soon) I feel I need to be more responsible about my budget.

4- Be out in nature more. 

5- Be more active with the dogs & take them out with me more. That always takes a ton of spoons, but I feel it is very worth it.

I also want to embrace new ways to self sooth that don't involve hurting myself (by over-eating or by over-spending.)

WHEW! That's a big list. Notice how "weight loss" isn't there?

When I put pressure on myself by turning my focus on that, I fail. I'm tired of failing, so I'm not making it a goal right now. My hope is by trying to do a better job of taking care of myself and simplifying my surroundings, other things will fall into place.

Happy New Year.

I wish nothing but amazing things for us in 2025.

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.

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.

Fears

I had my eyes checked at the end of August and bought a pair of expensive glasses. Then a few weeks ago I needed more contact lenses, but my current prescription was feeling a tad weak. I went back to my eye doctor and he re-checked me. Within four months my eyes had changed a little for the worse. But that's not all...

I feel like I don't see quite as well as I used to when I'm driving. Especially at night. Part of mitochondrial disease is having compromised eye sight. That scares me.

I don't take any minute for granted with my muscles. Knowing that I still have mitochondrial dysfunction makes me fear a relapse. That I'll suddenly not be able to walk or use my muscles anymore.

Taking joy in my pottery with my cute new glasses

I combat these fears with fitness. Working out makes me aware of my body and its limits. I enjoy it. I miss it when I don't do it. I especially love Yoga. Which is a big surprise. I love how aware I am of my body when I do it. It has also helped me the most with my strength and flexibility. Being able to lift my arms above my head is a thrilling accomplishment and I feel I have Yoga to thank for it.

When I exercise it verifies what my body can do. What I'm capable of. Not what might happen in the future. Today I am strong and can still see. Yay!

Finding A Rhythm

It has been a month now since my mom and I joined a gym together. We've been going regularly four days a week. That's a lot for bodies that up to now have only been in the pool with water weights. I say "only" but girl we slayyyyyyed in that pool! 

It still feels so strange to be able to do "normal" activities WALKING!

We're game for a change and tried most of their classes together. I was able to go back to doing zumba (HUGE YAY!) My big love from before I became disabled. My mom found out she loves water zumba. We are women who love to dance. 

I have discovered that right now I can really commit to three days a week. Monday, Wednesday and Friday. I need some recovery time and time to walk. I'm still working on my walking muscles too. Our gym has a fantastic track that goes through the second story. It reminds me of the train ride at Disneyland that takes you through all the lands. I can see the pool below me, see people behind glass taking a fitness class, others doing machines and weights. That makes it fun. 

But nothing beats walking this love bundle...

Max has been left at home while I'm at the gym. He was home when I would swim before, but it feels like a longer amount of time now (even though it's not). Most of the time he's not even alone. My husband works from home all but two days a week. We're talking about getting him a little sister next year. We'll see. Pets are expensive no matter how small they are.

In the meantime I'm finding my new rhythm knowing even this phase won't last forever. I'm just here, doing my best, enjoying each moment at it comes.

Hello Body! Nice to Meet You!

This is the third week my mother and I have been going to our new gym. We have been trying to go five days a week and making it four. Something always seems to come up once a week. So far that "something" has been me feeling ill.

When we joined the gym we were give two free sessions with one of their trainers. That's pretty typical for around here. My guy was great. He's a pro boxer very into fitness. I told him my story and he was amazed. Then he had me do 60 squats. 

Punching things is FUN!

I had on my knee brace to help support my larger, painful knee. So I thought all was good and I could do anything he told me to with zero problems. It went down a bit like this. We spent a lovely 45 minutes together with him taking me from machine to machine lifting between 40-20lbs. I pushed myself HARD and did it all. I was even rewarded with him declaring me "feisty" when I tried to jump the gun on a few seconds of rest to do more. That's my nature. I push. 

Also... I like impressing people. I enjoy finding my limits physically. And as I told him. "It feels good to have some pain that I'm causing. Not that's happening TO me and that I have no control over." The results? Basically my body heard me say that and went "You like pain lady? Here's some pain for you!" 

Uh oh. I over did it BIG TIME! I mean "want to scream just trying to sit down on the toilet" level of over doing it. 

At first I felt mad at the trainer for pushing me so hard. I mean, he SHOULD have known better, right? Wrong. The person who pushed so hard was me. I was the one who should have known better. I should have been listening to those pain signals and realized I was going to be in a world of trouble if I didn't reign it in. It's my body. It's me.

Not even the hot tub could save me from this poor choice.

In my defence, I'm still getting to know... well... me! And I'm naturally "feisty" and a limit pusher. I tend to go in whole hog, then pull back later. That's just my nature. I'm not a "dip my toe in the water" type of person. Hence that often leading to injury.

So here I am two days later still in a lot of pain. Last night before bed I took: 1 prescription muscle relaxer, 3 Ibuprophen, 2 Acetaminophen and when that didn't work finally a CBD/THC gummy. Then I was able to get to sleep. Lesson learned. I want to/need to get used to pulling back and listening more to my body signals. 

Fifth Brain Surgery Anniversary

Five years ago today I had a craniotomy for a benign mengianoma. In English... I had brain surgery for a non-cancerous brain tumor. It was growing in the left side of my brain just above my ear. The surgery was very long, but everything went as good as it could go. I documented it here.

I celebrated by spending the morning at the gym...

I work out for 2 hours almost every day.

Some kind of cardio for an hour, then swim for an hour.

Then I came home and had a delicious veggie burger. The patty was "mushroom risotto." Very unusual but so good. I ate it with the last of my sweet and spicy pickles. Fermented foods are important for me to have.

When I got home Max and I ran some errands. He's my best boy. I carried him in his sling through the grocery store, but he got to walk and explore through the hardware store. What a lucky dog.

"Go faster mom!"

Now I'm finally relaxing with a nice glass of Kombucha. It feels good to be off my feet. 

I like to remember where I was five years ago to make sure I savor each and every day. I'm grateful to be here. Thankful I can walk. Delighting in shaping my body to be strong.

CHEERS!

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...

Whiplash

I'm slowly coming around to the reality that I am no longer disabled. It has been hard to wrap my mind around becoming re-abled so suddenly. As suddenly as I became disabled. My whole world just shifted on its axis. Nothing seems impossible anymore. 

I've always agreed that food is medicine. But I never imagined a diet change could literally cure me. I'm still stunned by that fact. I AM CURED. Literally. I can walk, dance, climb. I don't need my wheelchair anymore. The world is open to me once more.

Tracking my progress with my Fitbit.
Keeping encouraged with my new bracelet "You've got this."

I still get sleepy in the afternoon sometimes. It has only been three weeks (today). Who knows what other changes are ahead of me. 

My neurologist was surprised and happy for me. She agreed that I can do a Baclofen taper. That's the first drug I want to see if I can live without. These medications make me foggy headed and I'm hoping I can either live without them, or with a much smaller dose.

I wish it wasn't so horribly hot out. I want to be celebrating out in nature! Not stuck in the house. 

Luckily I can (and am) still swim. There's always the pool.

I'm not feeling deprived at all with the delicious food options.

I feel restless. Eager to do new things. To explore. I feel like a little kid kept inside on a rainy day. Errrrr. I want to go outside and play.

Pushing Myself Hard

Spring is here where I live and I have been a busy bee. My Mom's swimming pool is back open and we were the first ones in it again. It felt fantastic to be back in water. There's no other workout like it. From the first day back in the pool I decided I was going to push my muscles.

Still working out with water weights.

I felt like all winter I physically atrophied. I did the basics, but not really anything that pushed me physically. The only way I can keep what muscle I have (or hopefully build on it) is with pushing myself. I'm already in physical pain every day. There's nothing like fresh pain to make you forget your old pain. And boy do I have pain!

But I also think it's a kindove good, almost normal pain. Like the buff girl limping as she leaves the gym. It is also teaching me about my body. I'm much stronger than I think I am. Strength isn't my problem. Stamina is.

Getting the summer garden ready took a lot of strength!

I've also learned that my lower back is the first muscle group to feel the pain and to give out. My back brace is a big help, but it doesn't solve the underlying problem. I'm going to do some targeted exercises in the pool to see if that can help. 

I have my recent MRI to thank for this push. It was incredibly painful to endure laying still on the table. My right leg and back were screaming at me to stop. But I pushed through the entire process. I was able to go much further than I thought I could. To tolerated more pain then I thought. This got me thinking about the limits I place on myself and my body with my mind and my fear of pain.

Now to be clear, I'm not going into Rhabdomyolysis or running miles around the block. I'm cleaning, gardening, moving small things around, re-potting plants (that are heavy for me.) Pushing myself in all these areas of what I usually do. I've been cooking dinner at night as well. These are all tiny things to most people, but each activity leaves me drenched in sweat. Seriously. I can't remember the last time I sweat this much and for so many days in a row. I do not enjoy that part, but I do like feeling stronger.

I masked out where our new TV is going.
This was a ton of work!

Mermaid Time is Here!

FINALLY!!! IT HAPPENED!!! I'm the luckiest mermaid ever.

The swimming pool at my Mama's senior community opened up. The water is perfection. She and I couldn't wait to get to use the pool in her beautiful neighborhood. Covid delayed our anticipated dip, but it also made us all the more eager to be the first ones in.

I adore swimming. I always have. I feel most at home in any body of water. That's why when my muscle disease came into my life two years ago I told people "I'm just turning into a mermaid!" I always knew I was one.

Water is also the very best way for me to get exercise. It's supportive and safe on my muscles. Like all things though I have to be very cautious not to do too much. Which is exactly what happened on the first day we swam. I learned however and adjusted. Now I have two pool noodles. I stick one under each arm and try to just move my hands, torso and legs. Not so much my arms.

The hardest part of swimming is getting out. Not that I don't want to get out (but that too), it's because my body then feels to weigh about 1,000 pounds. It's a serious strain and very challenging, but I just go slow. Even if the pool had a wheelchair lift I don't think I'd use it (*yet). It's a good workout just getting in and out.

In fact... putting my suit on, getting to the pool, unhooking my wheelchair, getting in, swimming, getting out, drying off, getting my suit off, taking a shower, getting dressed again is about 99% of my spoons for the day. It's a serious workout for my body. But it's also one I'll enjoy doing for as long as I can.

Plan Kick Ass Progress

I'm starting week three of "Plan Kick Ass" now and I'm seeing improvement. I'm much stronger that I was before and my joints and muscles hurt less. I attribute that to pushing myself physically. I've been walking my dog, not using my wheelchair at work, taking short walks at work, stretching daily and doing chores like gardening and cleaning. Things I haven't done in almost two years!

My eating is going well. I notice that the healthier I eat the worse I feel when I eat something not the best (like gluten free mac n' cheese.) If I stick to whole foods I do well. Now I'm going to focus more on portion size.

We're in the thick of tomato and pepper season where I live and they're delicious! I'll be sad to see them go soon.

My stamina is the same and I still feel the need to nap daily. I am slowly decreasing my Cymbalta and that seems to be changing my sleep. I'm now down from 60mg to 30mg and my mood is still really doing great. I attribute that to the increase in exercise and the sense of accomplishment I feel getting more done and taking charge of my body.

My weight is still an issue for me and something I'd like to work on. Though I feel I'm heading in the right direction. 

And of course... here's your gratuitous puppy picture!

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.

The Last Time...

I've been having the feeling lately that there are many things I'm doing "for the last time." I'm torn between being at peace for this because of the pain and discomfort they cause and mourning the loss. Let me be more specific.

Last week I used a branch saw to trim back the neighbor's rosemary plant that was trying to eat our garden. It's something I've done many times before and never thought much of it. The saw is very sharp and it doesn't require much effort. But after 10 minutes I could barely open my hand back up. Yes, I had taken Ibuprofen before this. I told myself it was the last time I would even use that saw (or one like it.)

Sweet girl and her healing lovies.

Yesterday I went to the ZUMBA class at my gym. It's something I used to super enjoy and I've been trying to go slow and still do the moves. Well, both last week and this week the effort left me sore, stiff and with serious lower back pain even 24 hours later (and totally exhausted.) I think even with modification the moves are just too much for me (at least for right now.) I'm going to stick with Tai Chi or the pool.

Although neither of these activities are something I can't live without, they have one thing in common. They both felt very much like "LASTS." As in "that's the last time I'm doing ZUMBA." And that sucks.

I'm telling myself that this could be temporary and that my new rheumatologist could come across with some wonder drug that will wipe out RA (and not re-activate my TB.) But I also am aware that the opposite might be true. That this could just be a new way of being for me.

I am determined to embrace the CAN'S and move on away from the "cant's." But I also can't stop myself from wondering how many more "lasts" are in my future?

Trying to keep fit

A haiku to exercise:

workout 

red face

this sucks

Post-workout today

And yes... my tongue is doing much better!
Saltwater rinses are magical. I just had to keep up with it. 

I'm proud that I've been keeping to my goal of doing some kind of workout daily. Yesterday was physical therapy (where the PT said I gained 4% mobility in my neck! YAY!) Today was a ZUMBA class at my gym. Even doing it at a very low impact I could just manage 45minutes instead of the full hour. It's ok. It happens. I was awesome. Pitbull would be proud. 

Tomorrow is "my choice day." That means I can either go for a swim or do my Tai Chi for arthritis video. I think it will depend on my energy. If it's low I'll do the video and stay home. Feeling good = gearing up for a swim. If I'm feeling completely saucy there's an aqua aerobics class at my gym at 8AM, but that's a shot in the dark.

I'm worried that if I don't do as much as I can while I can that I'll lose what muscle I have. I can feel my stamina and strength just draining every day and it's a freaky feeling. So, I'm working hard to do what I can to keep myself going. Keep smiling, keep dancing, keep swimming and modify when I can.

My Health is My Job

I had my first physical therapy session yesterday. I tried to keep any open mind and I'd say it went well. I learned quite a bit and am glad that I went. I'm going to go back once a week at least two more times and then see how things are going. We're focusing mostly on my neck and lower back (lumbar.)

(He's recommending I see an OT for my hands)

It was helpful to me to get another point of view on my body. The physical therapist was very knowledgable and said I'm having "systemic problems." Yup... I knew that one. It also inspired me to make a commitment that while I'm not working I need to treat my health like it's my full-time job.

My plan looks like this:

1. Continue eating a lot of fresh fish, vegetables and good foods
2. Workout in some way every day (Tai Chi for Arthritis video, swim at my gym, go easy in a fitness class, walk, whatever I can do that day)
3. Get plenty of rest
4. Drink lots of water (but not right before bed!)
5. Go low carb and high fiber
6. Keep in communication with my doctor and make my needs known
7. Attend all appointments, labs, scans, tests and try to keep an open mind
8. Be kind to myself, go slow, be patient and understanding
9. Let others help me when I need it and ask for help when I need it
10. Not keep my challenges to myself

I find planning and making goals to be really helpful. It makes me feel like I'm not just idling while I wait to start my new job. I like the feeling of "proactivity." I'm also ok to constantly refine my goals and adjust them to what works and what doesn't. For example I recently ditched "juicing." I love the juice and it was a good start to my day, but I just didn't have the spoons to spend 20 minutes to make 1 glass of juice. The cleanup alone was exhausting! So I modified my plan and I now buy a green juice with no sugar already made from the store. I'm sure it's not as perfect as making it yourself, but I modified and went with what I could do.

My husband and I have fallen into a great rhythm in the kitchen with dinner time. He handles anything too cold (because my hands are super temperature sensitive) and does all the chopping. I do the main protein and carb. This also keeps us on opposite sides of our dinky kitchen and out of each other's way. It's something I really enjoy doing and it works great for both of us. 

Life is all about learning and adjusting. Letting go of what no longer works for you and learning new ways to expand on what does. These last few months have been a major time of change, but I think I'm coping with it pretty well.

Rheumatoid Cachexia

I think I might have found what's going on with my muscle weakness. Last night I stumbled across something I've never heard of before called "Rheumatoid Cachexia."

The Cliff's Notes version of Rheumatoid Cachexia is that it is muscle wasting in people with RA. Sadly it's most common in people newly diagnosed with RA who are also overweight (ding ding ding!)

I found this blog on RA where the author says this about her experience:

"Almost overnight, I went from lifting 50 pound bags of concrete mix or fertilizer to being unable to hold onto a glass of water." 

Her story completely mirrors what I've been going through. One day I can work in my garden and the next I can barely shampoo my hair. Funny thing is my rheumatologist told me that muscle weakness doesn't go with RA. Did I mention how much I'm looking forward to getting a new rheumatologist? I have a message in to her about all of this but my expectations are very low. About as low as my current physical stamina.

(Me being a mermaid a few years back.
Testing out my underwater camera before we went to Iceland.)

I read that the best way to fight the cachexia is through "resistance exercise" and eating a lot of fish. Checkmark on the fish increase. We've been doing that for a few weeks eating it about every other day.

(Our delicious cod fish tacos that we had for dinner last night.
I like to steam my cod in my rice cooker. It's super easy and doesn't make the house hot.)

As for the "resistance workout" part, I have my first physical therapy session tomorrow. I also still belong to a gym that has a heated pool. I need to get back in it. Swimming and aqua aerobics is fantastic for health and mobility challenges because it's easy on the joints. I can get resistance and still keep it low impact. 

I also asked my PCP if we should re-do my back images since the last ones were done 17 months ago. He agreed and that's on order. More time in the "fun tube!" (My pet name for the MRI machine.) My husband and I joke that we need to make t-shirts for the medical center that we have to go to for all our scans and testing because we're there so often. I think that would be hilarious. He said we could have the name on the front and "Let's hope it's negative!" On the back.

Humor is so important.

Exercise that doesn't hurt

I've been wanting to learn Tai Chi for years. Unfortunately I've been unable to find a class that works with my body. I'd attend a "for beginners" class and just leave frustrated and hurting. The videos I tried from my library were the same. But then I tried this "Tai Chi for Arthritis" video that I found on YouTube.

Ok. I still can't do the whole thing. Just the warm up. But I noticed that my muscles do feel better today. It could be a coincidence, but I'll take anything that might help. 

They always have a very long introduction.
This was where the movement actually started (in case you're curious.)
The intro is good to watch if you know absolutely nothing about Tai Chi.

I love that they have someone seated in the video.
That's my idea of "for everyone!"

Dr. Paul Lam has a nice soothing voice and he really does move slow and easy. He's very comforting. Very Mr. Rogers in how he talks to me (I like that.) Some other Tai Chi I've tried was crazy fast and actually hurt. Not this one.

My only complaint is that I wish the people in the video were more age diverse. Once again we get into "because it's for people with arthritis or movement issues we must only show seniors." How about a cute punk girl with blue hair seated in a wheelchair? Now we're talking!

I'm going to try sticking with this little video for a while and seeing how things go. I'm hoping for a little less muscle weakness and some increased energy and stamina.

Yesterday I read this article on Muscle Weakness and RA (it's a bit academic, but super informative.) At the end it stressed the importance of exercise with RA and how most people just don't/can't stick with it. Speaking for myself I know that it is supposed to help, but it also takes a lot of spoons and can make me feel sore (worse) for days. Here's a little excerpt and why I'm trying to find something I can do regularly.

Exercise as Therapy

Regular physical exercise, both aerobic and strength exercise, are recognized as an important component of the management of RA. In patients with RA, exercise-induced beneficial effects include increased force production and muscle mass, increased aerobic capacity, lower amount of fat mass, decreased inflammation and pain, and an overall sense of well-being (Häkkinen, 2004, Häkkinen et al., 2001, Lemmey et al., 2009, Sharif et al., 2011, Sokka et al., 2008, Stenström and Minor, 2003). Thus, exercise per se appears as an effective overall therapy for patients with RA. However, this requires that the patients are active several days per week, which is not the case for many patients with RA. In fact, Sokka et al., reported that out of 5235 patients from 58 sites in 21 countries, only ~ 14% were physically active ≥ 3 times per week (Sokka et al., 2008). Furthermore, Lemmey et al., 2012 reported that in their 3-year follow-up study of patients with RA that had performed a 24 week high-intensity strength training program, no one in the exercise group was still exercising. Thus, a challenge with physical exercise as therapy is to achieve sustainability and to engage the patients in regular physical activity for the rest of their life.

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.