Am I Ready?

I keep having dreams where I'm in an elevator and it's not going where I want it to go. I take it to mean that I don't feel in control of my life right now. 

I thrive on change. That's one of the things that drew me to therapy. As my mentor and supervisor once told me "Even the worst session only lasts an hour." Each hour a new person would come in with new issues and it was a huge change, and a challenge. A fresh chance every hour to help someone change their lives.

I don't miss that level of intense work, but I do miss that feeling of helping people in that way. I feel ready to start pursuing my CEU's to turn my license back to "active." 

I feel able to take on maybe a weekly support group. Especially this summer when the weather is ok. Storms trigger my migraine pain like crazy.

But also...
I'm loving ceramics. Spending time doing art is intensely therapeutic for me. So I will absolutely keep time for art. I have no intention on working full time at a 9-5 job ever again. I just can't do it. My body is much too unpredictable.

I also get a lot of pleasure out of being available to my dogs, husband, son and mom. If anyone needs me for anything I can help.

 

Dear Diary Dump Day

Dear Diary,

This year is almost a quarter over. How can that be? I haven't written in a while. Here's what I've been up to.

• Margo is officially done with all of her medical treatments. Yesterday I wrote the check and filled out all the adoption papers. Yay! Now I'm the "proud dog mom" of two dogs.
  
  
  
  
  
• Pablo was sold. There is now a huge empty spot in our driveway. The driveway we had built just to accommodate our wheelchair van. We're a single car family now.
  
  
• As much as I loved my massive gym, it was just too far away from my house. Going there, working out, showering, changing and coming home took most of a whole day. So I recently joined a different gym much closer. I don't like it quite as much, but it does have a pool, yoga and zumba. That's all I need.
  
  
  
  
  
• John and I decided that this October to celebrate our 30th wedding anniversary we're going tooooooooo (drum roll please) MAUI! I love Hawaii so much and can't wait to go back.
  
  
• I'm still fat. Chubby. Chunky. My eating disorder is alive, well and thriving. This is by far the hardest thing I've ever done. Trying to stay on course, manage my portion sizes and what I eat is proving to be my Darth Vader mega boss battle. But each meal I try again. It's also a struggle not to fixate on it or kick myself for eating something unhealthy.
  
  
• I'm sick of gardening. I wish I could sell our house and buy a condo where all I had was a tiny patio and space for the dogs to wee and poo in. I'm serious. I think subconsciously I equate it with my illness? I'm not sure exactly every reason why, just that I'm over it.
  
  
  
  
  
• I'm enjoying photography and ceramics. I would do both every day if I could.
  

Well, that's about all for now. Remember to be gentle and kind to yourself.

My Colorful Life

Every day since mid-August (two short months ago) I pinch myself. I can't help but think "Is this how 'normal' people feel? Like allllll the time?" It baffles me. I can't remember a time when I had this... much... energy. Seriously. Not when I was a kid. Not as a teen. Not as an adult. I wonder how long I've actually had symptoms of this disease?

Here's what I've been doing with this new energy source.

• Friends old and new. Relationships outside of my family have been incredibly hard to manage with my crippling fatigue. It feels fantastic to be able to devote some time to my friends. And I've made a few new ones recently. Nothing I could have even considered before.
  
  
  
  
  
• Gardening. My husband said the other day that I've "taken over the entire garden." He said it in a good way. He's been incredibly busy. 
  
  
  
  
  
• Home decorating. My house was in need of a facelift. I'm in the process of painting our fireplace wall and getting my home ready for some company.
  
  
  
  
  
• Entertaining. Having friends and family in our home before was exhausting. My husband had to do most of the work. It wasn't unusual for me to have to leave mid-party to go and sleep. I'm looking forward to winter holiday entertaining while conscious.
  
  
  
  
  
• Working out. I'm enjoying the gym very much. I took a yoga class for the first time yesterday. I loved it, but not as much as Zumba. I'm a high energy person now and have fun dancing with a room full of other people.
  
  
  
  
  
• Max. Poor Max. Before he would be stuck sleeping with me all day. Now I walk him twice a day (weather permitting) and he's with me as much as possible. Just this morning I walked him around the block. Now he's about to come with me to the store. Later today we're meeting a friend for tea. He's my little "adventure buddy" and he loves it.
  
  
  
  
  
  
  
  
• My hobbies. My husband and I recently did a Raku workshop that was long and intense. It was also located on a farm. Not wheelchair friendly at all. Nothing I could have done before, even if I had the energy for it. 
  
  
  
  
  
  
  
  

I can't explain what it means to feel fully alive again. I didn't get my "life" back. Instead I gained new experiences, new relationships and a more engaging future. My life is richer. Fuller. It feels like the movie The Wizard of Oz when it goes from black and white to color. My life as a sick person was black and white. Now it is so full of color that it's blinding.

What's New Pussycat? (Oh whoa whooooa whoa...)

There are many new things going on with me creatively, medically and in my home. One of the bigger things is I finally have my BiPap machine. 

At first I was given a CPAP which has continuous air flow. It didn't work for me at all. It was like drinking from a fire hose. It took me about 6 months to get a BiPap instead and I hope it was worth all the work. (A BiPap has less pressure going out and more going in.)

I'm able to tolerate it all night, but learning to keep my mouth shut is still a huge challenge for me. Yup. I'm a big time mouth breather. I have noticed that my lungs feel much better in the morning when I use my machine then when I don't. I can breathe much easier and don't feel as asthmatic. I did read that a BiPap is supposed to be helpful for asthma. 

A non-medical thing I'm doing that's new is watercolor painting.

I've always loved oil painting. But it's very hard to do in your home. It also requires a lot of chemicals, so I stopped doing it when I didn't have a student studio anymore. Acrylic painting is fun, but not the same as oils. But with watercolors there's far less setup and cleanup. It's much easier on my muscles too. It's challenging and new, so I've been having fun with it. 

My garden is really going all out now. We have this beautiful orange-ish sunflower out front that's just perfect.

I love spending time out there when I can.

We're doing a major remodel of our front area right now too. We're excited to have it all finished so we can enjoy it. We're getting new fencing, a new driveway and a new bigger front patio with a water fountain! It's actually more like a small waterfall. I'm so excited to see it done. 

I've been finding the contractors and coordinating as much of it (including the design) as I can. Then my husband jumps in and takes care of the financing end. We're a great team and so far things are moving along. It's a challenge to deal with contractors, let alone 4 of them, but I can do it.

So that has been taking a ton of my time.

And then there's my weight. I hit an all time high about a month ago and am working on reigning in my eating. But it's very hard.

I honestly feel like I don't eat a ton, but then I have to remember that I also don't get very much exercise. The pool is about it. And although it's good for me, it doesn't help me lose much weight. In fact it makes me hungry!!!

So that's an ongoing struggle and something that's on my mind a lot.

I'm also always researching migraines and trying to find something that will help me more than the tools I already have. 

Although I already have pink tinted glasses, I thought maybe they aren't tinted enough? I got the darkest pink that I could at the time. I love that you can just try out a theory by finding a new pair online. I ordered these last night with a darker red lens to try out. Many of these companies take returns too, so if I hate it I can get them re-done in a dark pink similar to what I have now. 

And of course you might have also noticed that I colored my hair red. Actually my mother helped me to color my hair red. As in I told her how to do it and she paid for the supplies and did it for me. What a mom. 

To go from blue/black to flaming copper red is no easy task, even for a fully trained hair dresser. But 30+ years of coloring my own hair taught me a lot! And the few times I did go to the salon for a color I paid close attention. 

It took her a full day, but she managed to get as close to what I wanted as was possible. I've been having fun being a redhead for a change. 

I'm trying to make time for friends in all of this, but my health has been really awful lately. I've needed a lot more rest and down time than usual (which was already a lot). Just making time for family and the house project is about all I'm good for right now. I'm counting the days till my next Botox shots for migraine (still a month away). I'm putting myself and my needs first, which is still hard for me to do.

My Favorite Things

My wheelchair was just repaired (for the millionth time) and I enjoyed taking her out to the store on my own today. My independence is crucial for me, even though what that looks like changes over time. Dory and I had a wonderful time just zipping to the store and walking my dog. 

Most of my favorite activities are things I do independently. Tending to my house plants, shopping (online too!), photography and painting just to name a few. 

Plant keeping

My puppy

Taking pictures

Eating is a big hobby of mine and that's more fun with someone I love. I also adore chatting over a cup of coffee, especially in the morning. And my top favorite thing is watching a relaxing TV show or movie. Especially while getting foot rubs, or having a heating pad tucked behind my neck by someone I love. 

Plan Kick Ass - The Revenge!

I've talked in the past about my addiction to food. It has been a huge comfort this last year that I haven't been able to work. I've also tried different versions of what I like to call "Plan Kick Ass." In short PKA is always my attempt to regain control over my eating and diet. I'm not even including "health" in there because I honestly feel I'm as "healthy" as I can be. 

It's my enlarged fat cells that are the issue currently. My scale reached an all time high last week and I didn't like it. Since I can't exercise much the only way to change that situation is by intake. But there lies the trouble. I LOVE FOOD!!!

But there are things I love more than food:

• Art and making art
  
  
• Talking with family and spending time with them
  
  
• Snuggling with my husband
  
  
• A good TV show like Brit Box's Miss Marple series
  
  
• Walking my puppy
  
  
• Playing with my jewelry (a la' Elizebeth Taylor style)
  
  
• Sipping coco or coffee under soft blankets (especially if it's raining outside)
  
  
• Watching a movie with my Mama at her house

I bet there's even more than that! That's just off the top of my head. So why make food my number one? Because it's easy, something I have to do anyway and always there. But I'm working on it.

What I'm Into Lately

Rather than go on about my symptoms right now (many) or how I'm feeling (shitty) I thought it would be fun to talk about things that I'm into right now. New things. Things that keep me going and fill me with joy.

1. Puzzles: My husband and I started doing this last December and have been going strong all year. I can manage it sitting and focusing on such a small thing is really doable for me. I can also do it as long or as short as I want.
2. Records: I bought myself a record player after wanting one all year. I still have zero records though. Hahah! But I really like the idea of listening to records instead of watching TV.
   
   
   
   My new record player - minus the record. 
3. Socks: Fun socks just make me smile. My recent acquisitions include Wonder Woman and Grover. I have a rainbow striped pair that I call "my happy socks" that never fail to cheer me up instantly.
4. Pajamas: All things soft and snuggly. I'm embracing my comfort needs with clothes that feel like blankets.
5. Blankets: Can't have enough of them. Seriously. Never enough soft blankets of all sizes and colors.
6. Wood Burning: I bought a simple wood burning kit to try. I thought I could make cool, cheap Christmas gifts with them. We'll see if I ever get enough spoons to be able to give it an actual try, but I'm hopeful!
   Funky!
7. Acrylic Painting: I used to paint a lot and was quite good at it. I have a painting in mind that I want to do and a great canvas. Now I just need the spoons.
8. Redecorating: Putting up Christmas decorations makes me very happy.
   
   
9. Family Pictures: I've been updating my family pictures. I have one wall of just myself, my husband and our son, then a hallway full of family photos. I enjoy keeping them up to date. They help me remember all the fun we have and the people who care about me.
   
   
   
   Play it grandpa!
10. Re-Arranging My House: This has been a big one lately. My bedroom was pretty sparse compared to the rest of my house, despite my spending a lot of time in it. I also had another room all set up for work and getting ready for work. Both were seriously depressing me. I turned my "work" room into more of a library and we've been fixing up our bedroom so that it's useful AND fun. Both of these things have been hugely helping me transition from working to being home. I need my environment to reflect my needs or I get very depressed.

Now I just need to save my fun money to get some records to play! I'm looking forward to it.

Growing Patience

As I said before, I used to garden a lot. I have a big garden where my front yard used to be and in the past have enjoyed growing lots of food for my family to enjoy year-round. I could spend about 2 hours in the garden working before getting pretty tired. That was about my limit. Right now my limit is about 15 minutes. That's a huge change. And to avoid the sun I'm typically out there at twilight.

Despite my husbands best efforts to keep the weeds under control it has quickly gone from "charming wild garden" to "out of control wilderness." Although I do get frustrated that I can't be out there as much as I want (even 2 hours was a lot less than I wanted.) It's also forcing me to prioritize and have patience.

One big change I'm doing this year is I'm not hand watering anymore. Believe it or not I used to get out there every other day with my hose and hand water every plant. Yeah... that's not going to happen right now. I also don't have the spoons or money to put in a drip system. So I went old school. Enter the sprinkler!

Even now when I see a sprinkler going I want to jump through it like a 7 year old again. There's just something summery and joyful about rays of water shooting up at high as your roof and raining down upon eager plants.

My fella installed it for me last night while I got my 15 minute "high priority" gardening done. That was the first time in a long while that being in the garden didn't make me want to cry because of what I "couldn't do." Instead I felt glad that I finally got to tackle the few things that I could do. And that hopefully what's already there won't die from a lack of watering.

Don't you just want to run through that?

Watching the water do its magic on my thirsty plants from my chair I realized that along with the sunflowers, my patience is also growing. I'm sure I'll still have plenty of moments of frustration, but hopefully they will come less often.

Embracing Change (or not)

Over the last eight years or so I was bit by the gardening bug. It started off with just a few tomato plants crammed into a little spot I cut out in our front yard lawn and grew to a huge garden where our front yard lawn used to be. Gardening brings me a lot of pleasure. It connects me to nature and makes me a better person. How? By reminding me that everything has its own time and patience is vital to survival.

During the last 3 years gardening has become harder and harder for me. I'd love to be the lady you see in the arthritis commercials who pops a few Aspirin and runs out to pull weeds for hours. But my body just won't cooperate. My stamina is crud, my hand strength is minimal and now with the Plaquenil I can't be in the sun. Dang!

My garden in 2014

This is how my garden used to look. Ordered, planned, structured with just a HINT of wild. And this is how it looks 4 years later...

My garden today - April 26th, 2018

This is mostly lettuce that we've been enjoying.

It bolted very fast!

I've cried a lot about my garden. I know that sounds lame, but it's very frustrating for me not to be able to do all the things in it that I have in my head (or that I used to do. ) When I was being treated for Latent TB I'd try and garden like I used to and I'd end up vomiting every time. I'd push myself way too hard. Even though that doesn't happen anymore, tears aren't much better.

Apparently I still have a lot to learn about "patience" from my garden. Now she's turning into a wild space. I was looking out the window this morning thinking how beautiful it is. It's not "structured" like it used to be and I'm still frustrated that I can't do all the things I want to do with it, but it's beautiful and full of life.

That's a bit how I feel about myself right now. I can't do all the things I want to do, or how I used to do them. I'm learning a new kind of living and a new kind of beauty in life. It's not easy. Not at all. And I'm sure I'll still have moments of crying. But I see that it's also important for me to sit back, drink my coffee and notice the good changes too. Just like my wild garden.