Sacred Space

My job is very intense. I hear a lot of stories about people suffering and their struggles. People always ask me how I do it? How do I manage hearing such horror stories without having it affect me. How do I not absorb it like a sponge?

Well first of all not all the stories I hear are awful. If you look close enough you can find hope, tenacity, strength and beauty in almost all of them. Second I've had a lot of training to not let it effect me. But most importantly I believe in letting those stories go into the universe. Regardless your beliefs, faith, spirituality or religion I feel this is a helpful practice.

Personally I consider myself a Progressive Christian, but I have many Buddhist leanings as well. Did you know that Buddhism isn't really a religion, but a Philosophy? You can be Buddhist regardless of your religion. Fascinating! As a Progressive Christian prayer is very important to me. I pray for all of my clients at least once a day. I don't feel I need "formal petitionary prayer" like our Grandparents used to do. Like Mindfulness you can do it anytime, anywhere. But I was feeling the need to carve out a special little spot for myself to re-charge my empathetic batteries.

Enter the "Meditation/Prayer Closet." It took me about 3 days to complete (thank you chronic illness.) I remember a time when I could have done it in 1. But I did it and the only part I didn't do myself was brining my couch in. I'm grateful for help with the big things. It was important to me to do as much of it as I could on my own though, since it's my special place.

It used to be a closet in what used to be my son's room. Now it's MY room. I love it. It's the first space I've had as an adult that I got to decorate 100% just the way I wanted to. Apparently my taste can be defined as "little girl pretending to be a grown woman."

Would you like a tour of the whole room?
I thought so.

Yes I like sharks. And teal. And Disney.

This is where I keep Ariel parked and charging.

I LOVE the new sheep skin arm covers.

Here's my purse collection, shoes and shower stool.
Also my rather large jewelry collection.

That desk is where I do my makeup.

It used to be where I did my homework, but thank God that part of my life is over and done with.

We have one tiny bathroom, so this gives me a good spot to get around that's not in the way. It works out really well. 

The meditation closet, my scarf collection, my antique pie safe that holds my linens and my dog's butt. 

I adore this old pie safe.
And HERE'S my dog's head!
Those are art supplies on top and a too large stuffed animal collection.

This is a fun corner. It's all about my husband and I having fun and making the most out of life. I have Disney pins, a cross-stitch of our family that I made a long time ago, important quotes, tickets to great things we've seen and done...You get the picture (literally! Hah!)

Holiday Week In Pictures

Hello friends and happy holidays! I've been wanting to post this blog of "pictures from my week" for a few days now. But you know... holidays. Here's a bit of a photo montage of what my week leading up to Christmas was like. Just a taste if you will. I hope you find it fun and helpful.

I do have a few outside links to items if you click on some pictures, but once again I received NO kick back or incentive for doing so. I just like to share helpful information. 

December Symptoms

I noticed it has been a very long time since I shared my symptoms here. Not since July to be exact. 

July, 2018 Symptoms Blog Post

May, 2018 Symptoms Blog Post

I also noticed that back in July I talk about using Meg, my rollator. She's become like another limb for me. It's really hard to imagine it has only been 5-6 months that I've been using her. Now I consider "only using Meg" to be a very good day. Anything more than a 1 store stop and I need more than just Meg.

So here's what I'm currently struggling with: 

•   Instability when walking in both legs. 


•   Gradual muscle fatigue when standing and walking in both legs.

•   After apx 420 steps extreme leg muscle fatigue. 


•   After apx 420 steps thigh muscles start shaking with muscle fatigue. 


•   After apx 420 steps legs muscles feel strained and mildly painful as if they had major exertion (like ran a marathon.) 


•   After apx 420 steps face and body break out in cold sweat (takes hours to recover from the feeling of major muscle exertion.) 


•   Frequent muscle cramps, twitches and spasms: arms, legs, arch of feet on the bottom, torso, right eye. 


•   Bottom of feet feel sore like I ran a marathon. Deep muscle ache. Especially in the morning and at night. 


•   Not able to sexually climax since muscle issues started. Muscles fatigue too quickly, even with pillows 
and support. 


•   Minor muscle weakness in right hand when compared to left. 


•   Arms fatigue (again, feel strained as if they had major exertion) when: brushing teeth, shampooing hair, cutting food, cooking, pushing a broom, minor activities like shopping. 


•   All muscles start off at normal strength, but fatigue with use much faster than typical. 


•   Constant back, neck and right shoulder pain. 


•   Constant stocking glove pattern neuropathy managed with Lyrica. Began 2015 post Latent TB Treatment. 


Treatment/Modifications: Rollator, transport wheelchair, electric wheelchair, reduction in house chores, rest in between activities, major reduction in physical activities, use electric scooter shopping carts, hot water bottle for back and neck, Ibuprophen PRN, warm showers, muscle rubs daily, not lifting more than 20lbs, home modifications like safety bars, cooking stool, etc. 


I also keep a running list of my testing flags and medical issues in the hopes it will help. I bring this list with me to every single doctors appointment that I have. Honestly, the doctors barely glance at it. They say something like "Well aren't you prepared" and then just put it down on the counter and proceed to ask questions that are answered on this sheet. -sigh-

I did have a bit of good news this week though. My neurologist messaged me to say that he feels my latest lab tests are matching his suspicion that I have Metabolic Myopathy and that's the source of my muscle weakness. I hope he's right and at my January 9th appointment we can begin some treatment. 2018 Has been a challenging year. 

Missing Her

One of the hard parts of now working 40 hours a week is missing my dog Sweetie. I've had her since she was a 3 month old puppy. She's around 12 now. I saw her sweet face at the animal shelter. She was so small and curled in a ball in a giant cage. I just knew I had to save her and make her feel loved, safe and warm the rest of her life.

She has been my constant companion, especially when my chronic illnesses struck. If I'm in bed, she's in bed with me. When I'm up, she's right there. When I'm in the shower, she's in the bathroom waiting for me. My husband has a dog too and they do get along very well, but I'm her Mama. It's just always been that way.

I do what I can to make her cozy before I leave in the mornings. She jumps up on the couch on her fluffy pillow and I cover her with blankets. If she seems cold I tuck a hot water bottle right next to her. But then I'm gone for 11 hours. I miss her terribly and I know she misses me.

One of my favorite parts of the day is coming home, sitting on the couch with her tucked between myself and my husband and snuggling her. Yes, I'm the kind of person who kisses her dog. No tongue, but I can't help it! I hope you have your own rescue comfort animal too. I can't imagine my life without her.

What's New?

It must be December because suddenly I'm super busy. Trying to juggle my RA symptoms, viruses that keep sneaking up on me, still recovering from brain surgery and testing my ongoing muscle weakness issues. Oh yeah... AND I just started working full time. This past week I moved up for 30 hours to 40. But I'm happy to report that it went really great!

I found this pinecone on a walk around my office complex. 

Isn't nature amazing?

I love my job and feel blessed to be able to do what I do. This week went very fast and didn't feel like that much of a shift. Of course it helps when you have a supportive partner like I do. He did all the shopping, cooking and cleaning up this week. All I had to do was come home, eat and sleep. I'm always grateful for his support.

I've also been sleeping world's better recently. Much deeper with longer REM stages. I think the brain tumor was screwing with my sleep and I didn't even know it. And a good night's sleep can help like no other medicine.

Aside from all the love, support and great sleep I'm trying to be careful with my eating. My husband and I encourage each other to get protein in the morning. I also pack a lunch to eat healthy even at work. I never forget the snacks! My favorite is a hard boiled egg. It keeps me feeling full and gives me energy.

I did a little art project the other day using paper plates. One side is the "Me" that everyone sees. Happy, healthy, smiling. The other side is the "Me" that is much harder to spot and only my husband really sees. That's chronic illness, pain, sickness, exhaustion, sadness, frustration and all my symptoms.

I showed it to my husband and he said it made him sad. I understand. It's hard having two sides with you all of the time. Every time someone tells me "YOU LOOK SO GREAT! YOU LOOK SO HEALTHY!" I actually flinch. Because I know that they're only seeing what I present and none of the struggle and suffering. It's not all of me. Not even the most important part. It's just the mask I put on every day. Do you ever wish people could see what your chronic illness really looks like? The toll it really takes on your health, both physically and mentally? I know I do.

Out and About with Ariel

Ok. THAT was an exhausting weekend, but incredibly fun. Almost enough to distract me from the fact that tomorrow is the roller coaster into my first 4 day, 40 hour work week in over 26 years. I'm a bit terrified. And lest we forget I'm also only 8 weeks out from  major brain surgery for a tumor. 

"Ariel" (my new folding, light weight, electric wheelchair) performed really well. Compared to "Dory"  she has a response delay to her controls and is a lot smaller (but that makes sense to cut the weight.) She has a lot of power and even managed to go over some wet grass today. I'm thrilled to have her and couldn't have done anything I did without her help. She's already becoming an extension of me. 

But isn't a picture worth a thousand words? My smile should tell you how happy I felt with my new independence and "assisted stamina." 

Pictures from a Christmas Light event in our town last night.

I went about 3 miles around town in her today. 

My new travel wheelchair

Ariel, my new Fold and Go electric wheelchair, arrived yesterday. As you can see I was a bit excited to try her out for the first time.

So excited in fact that I didn't even bother to put shoes on. She's smaller than my other chair, but can fold right up and go in my car. At 55lbs my husband can get it in and out, but we're still trying to figure out a way that I can do it myself. There was once a time where I don't think that would have been an issue, so that's a bit frustrating. However, I'm an expert problem solver and I know I'll come up with something.

I also sprung for the travel protection bag and cup holder. Ariel and I are going places baby! She'll be coming with me to Hawaii in January and possibly Phoenix in April. That is if my doctors still haven't "fixed" my muscle weakness issues. 

I'm excited to have her and will take some better pictures later.

I RECEIVED NO INCENTIVE OR KICK-BACK FROM FOLD AND GO TO WRITE ABOUT THEIR PRODUCT. (But I wouldn't say no if they wanted to give me some free loot.) 

You may be wondering why all my mobility devices have aquatic themed names? The reason is two fold.

1. I love the ocean, sharks, mermaids and all the creatures in the sea. Growing up in California I've always been an ocean loving girl.
   
2. Losing the use of my leg muscles made me relate even more to all things that can swim. Ariel is a mermaid who (duh!) has a tail instead of legs. The more I lose my ability to walk for very far, the more I think of myself as just turning into a mermaid. It's a mental health trick that works great for me. I still love the water and love to swim. So there you go!