What I need right now

I adore being back at the gym. I feel myself getting stronger every day. I also feel I have more stamina. Something I was seriously lacking before. 

We go to the gym three days a week. I'm slowly increasing the difficulty and pace of what I do. Today was the first day I did a few minutes of stretching and water yoga before I got out. I forgot how good that feels. My back especially needed a good stretch.

 WOMAN POWER!

I'm feeling like a happy, beautiful princess. I love moving my body again. Feeding myself healthy, wholesome foods and of course, my red hair. I have such a "redhead" personality that I feel it really suits me. 

 I love being a redhead

I've been trying to pay close attention to what I need right now. And in the near future.

1) Move as much as I can every day. That's not to say push myself every day. A gentle dog walk or swim is perfect.

2) Avoid sugar and processed foods. They both make me just feel ick.

3) Gently push myself. Like slowly increasing my weights at the pool or staying in the garden a little bit longer. But don't over do it.

4) Eat a high protein, mito friendly short chain fatty acid diet. This is where I feel my best. Fresh foods, no preservative, berries all day every day. I'm like a bear when it comes to fresh berries.

5) Avoid gluten when I can. I feel really bloated and get acid reflux when I eat most gluten foods. I can even get eczema if I have too much of it.

6) Take care of my body. Lotion myself, eye drops three times a day, color or no color on my hair, gentle washing of my beautiful body...

7) Not eating an extreme diet. Like Vegan. That doesn't work for me. Also having a normal size dinner and eating at the table on weekdays. We can eat like slobs on the couch during the weekend. 

8) Eating almost no dairy. Goat and sheep cheese and rarely even that. I've cut wayyyyy back on cheese and I feel better for it.

9) Not obsessively weighing myself. Once a week is more than enough. It's about health and strength. Not numbers.

10) Having my partner and family also doing this with me. Swimming with my mom is so fun. We chat a lot while we work out. My husband is also eating exactly what I'm eating. That's so helpful. I like seeing him get more healthy too.

11) Writing in my journal, blogging, talking about my health, my body, my needs is very therapeutic for me.

12) Replacing ART with mindless eating. Making time during my busy week for art.  

 

Some of my delicious meals lately 

 

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...

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.

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. 

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. 

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.