Little Pleasures

Little pleasures pack a big punch and mean a lot to me.

I used to find pleasure in good grades, a helpful session with a client, a big vacation... big moments. Sure little moments were nice too, but they were often overshadowed by bigger expectations.

One of the gifts I now have is that ability to find pure bliss in the smallest thing. A perfect dandelion on a walk. Free plants found to nurture back to health. A morning cuddle with my man. Petting my soft dog. All of these make me feel as happy as I felt eating seafood in Dublin Ireland. 

But it's more than that. These series of small moments weave together to form the tapestry of my happy life. They feel like little shooting stars in the night sky bringing a surprise of pleasure to my day. I feel fortunate not just to have them, but to see them. They were always there, but often I was too focused on the bigger joys to really soak them in. Staring so hard at the planets if you will that I missed the magic of the stars.

When I learned to relax my tight grip on expectations, my future and even the day, I started to enjoy my treasures even more. Sinking into my soft bed to rest. Snuggling with my stuffed shark. The warm water as I take a long shower. I'm incredibly lucky to have too many of these moments to count. 

Remember How to Play

Why so serious?

My son told me last night that he's taking a break from Facebook for his mental health. I applaud that level of self care. Another important thing to remember with all the stress people are under right now is how to play. Your inner child needs to be fed more than just ice cream and Taco Bell. They need to play. YOU need to play.

When was the last time you played?

Do you remember how to do it?

Play is vital to keeping your mood up, interacting with other people in positive ways and helpful for your relationships! Here's some ways that my family and I play. 

Go for a nature walk and touch everything.

Go to an art supply store and buy whatever looks fun. Even if you've never used it before. Make yourself an art basket and keep it out where you can see it. 

Do some doodles.

Take pictures of yourself making funny faces. You DO remember how to make a funny face... right?

Go to a thrift store and "rescue" a stuffed animal. Or better yet, find one in a dumpster! Take it to a public laundromat and clean it all up. Give it a second home and a new life.

Paint your toes the color of the rainbow and find some shoes that look like muppets. 

Make funny faces with your pet and take pictures. Or just rub and nuzzle on them.

Buy yourself a tiara. Because everything is better when you're the boss!

Stop and smell EVERY single freaking flower you come across. Even if it's just at the store.

Go look at some art. 

Blow some bubbles, or a pinwheel.

Do a puzzle. Especially with someone else.

Paint a picture of your pet (even if you think you're not any good).

Other ideas:

• Sing your favorite song really loud
• Make yourself cupcakes
• Go outside and play in the mud
• Make a fairy house out of stuff you find
• Start a new hobby (like air plants or Yoga)
• Taste something you've never had
• Have a pillow fight with your partner
• Try a new musical instrument
• Buy some sidewalk chalk and decorate your street
• Make a nature crown for your head
• Look for interesting bugs
• Learn to juggle tissues
• Teach yourself tarot or runes
• Make a big batch of something delicious and share it
• Dig out your old video games and have a retro game party (ditto for board games)

Ways to stay calm

I have a dentist appointment today. It's my first one in a few years. Ok, more like five years. I'm a serious dentaphobe. As I was tooling up to stay calm before my dentophobia took over, I thought I'd share what helps for me in these situations.

Everyone has something they're afraid of and with a chronic illness you're likely to have to face those fears over and over again. I know I sure have! So here's some tricks that help keep me calm.

1. Timeline. I try and keep it all in perspective. It's a blip in my day (week, month, year) and will be over pretty fast.
2. Bring something to hold. A small rock, shell, Beanie Baby, whatever. It helps me if it's something heavy to help keep me grounded and relaxed.
3. Check your muscles. When I'm stressed I tense up a lot. Checking in with my body, especially if I start to feel pain and intentionally relaxing into it is really helpful for me.
4. Pick a smell. For me nothing makes me happier than the smell of my husband's deodorant. I equate that smell with him. Mix it with Irish Spring and Head and Shoulders and I'm over the moon. But for something like a dentist appointment stealing his deodorant and wearing it for the day is enough. It's like he's there with me and that helps me relax.
5. Be comfy. Many times I would have no control over a situation, but I can control what I wear. I skip the bra and wear clothes that make me feel happy and relaxed.
6. Treat yo self. I can't tell you how many times the thought of a chocolate shake or a caramel apple cider pulled me through stressful medical procedures.
7. Bring a soft blankie. Another trick I've done that was super helpful. Hospital blankets suck, so having my own has been helpful many times.
8. Have someone you love take you. My mom is taking me today, though she won't be back with me. But she would if I asked. That's love. To sit in the dentist office for someone!
9. Visualize. Everyone should have a calm, happy place they can easily go to in their mind. I have at least ten. Use it and transport yourself.
10. Breathe (if you can). It's not always possible to take a deep breath through things (spinal tap, MRI, dental crap), but if you can try and notice your breathing and keep it calm and slow.

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!)

Intense Week

Help Me Jesus!

That's what my Nana used to always say when she'd get stressed. Well, this week was for sure a "Help Me Jesus" kind of week. 

1. It was my first week working 30 hours. Monday, Tuesday and Wednesday all 10 hour days. I DID IT! I survived. Although I slept for about 15 hours yesterday to recover. But that's ok. Point is I did it.
2. I cleared my foot MRI. Now we know there's no sign of RA damage in my hands or feet. YAY!
3. I went through 2 MRI's in one week. Today's was a brain MRI. I didn't mind though because I'm seriously ready for some answers about this muscle weakness. I hope to get some soon. (Because I'm a sucker like that and always hopeful.)
4. I have an appointment with the wheelchair sales rep. Apparently they come to your house, measure you and tell you all about your chair options. This is a whole confusing new world that I have many emotions about. Sadness, grief, excitement, happiness, relief. It's a giant emotional stew.
5. I'm in love with my new medical case manager. She's seriously the best. Like a medical fairy godmother. Now while I'm at work she's following up on things for me and cracking skulls, making things happen and forcing them to happen faster. Thank goodness!
6. My son quit his job of 5 years. That was a bit shocking and worrying. 
7. I had a epiphany to let things go that I can't control (see number 6.)
8. My muscle strength and muscle fatigue got a little worse this week.
9. I learned my job is taking everyone to Hawaii in January.
10. I went back to church.

To celebrate my 8th MRI I had my husband take this picture of me with the statue at our medical center that has become a home away from home. It was more of a joke as it was Saturday and no one was around. Again, humor is everything!

Even though I'll be getting a chair soon, I'm sure I'll still use Meg most of the time. What would I do without her? She's my BFF.

I did learn however that I can't get that beautiful turquoise "Fold and Go" chair that I had my eye on. My insurance doesn't contract with them. But I'm confident that whatever I get will be what was meant to be (and I'm sure I'll think of the perfect name when I see her.) And if I hate the color I read about some people taking their chairs into auto painters who paint it for them. Hmmmm...

Planning for the work week is KEY! This is my go-to lunch. Some gluten free seed heavy crackers, low fat Italian salami, grapes and boiled egg. My work also has snack cheese available for us to munch on, so that's a welcome addition. 

This week I was craving rice krispy treats. My husband made me some that used chocolate krispies. YUM! I enjoyed them all week. See!

Here I was enjoying it while doing paperwork. It tasted like love and kept me going through the day. 

This week I also modified my office a bit for safety. Like taping this throw rug down. Aside from needing it down for Meg and my office chair, I like my space to be the best ADA space it can be for others. I didn't want anyone to trip. Problem solved!

Going to church on Sunday was nice. I told my husband I enjoy having a dedicated time and space to sit with my thoughts and meditate. I often have helpful realizations about my life when I'm there and things I can do differently. This Sunday was no exception. 

Now I'm waiting on the brain MRI results and processing my feelings about the chair. And napping. There's never enough time for naps. 

Mobility Help - Part 2

Yesterday was a big day. My husband and I went out and bought my first Rollator. I named her "MEG."

Me and Meg hanging out together yesterday.

She's a 16lb light weight, foldable Rollator. I like the fabric back better than a padded bar. The seat is also padded. You can see in the above picture that you can fold it up when walking to give you more leg room. I have long legs, so that's great! She's also plenty wide for my ample backside and very comfortable for sitting in (the main reason I got her.) 

MEG

She's VERY easy to push, so at least for now I don't think I have to worry about my arms and hands being over fatigued. I have a physical therapy appointment this Friday. I'll bring her with me to make sure I'm using her in the most ergonomic way. 

She's also a beautiful blue/grey color (like a shark) which is also where she gets her name from.

I'm VERY excited to see this new shark movie "Meg."

I ended up just buying one instead of renting. In my area renting one was about $50 a week, but buying was less than $200. If I was pretty sure I was going to need it longer than a week it seemed foolish to flush a quarter of the cost of buying on a rental. Also the ones available for rent were small and not in great shape. It was very helpful for me to go and see them in person and try them out to really know what features and size would work best for my needs. That's the down side to buying online (even though there are some really cute ones online!)

When I got her home I cleaned her off (she was a floor model and caught my eye right when I walked in the door of the medical supply store.) She was pretty, tall and had a cushy bottom... JUST LIKE ME!

My tricked out ride

She didn't come with a basket or under-storage because then the seat couldn't flip up for walking. I could have added one, but I found something even better. One of my favorite bags that's sturdy and made out of seat belts attached perfectly to the front bar. I can even still fold it flat with the bag still attached. I might try and find some thick carabiners or hooks instead of the strap, but for now it works great. 

Here's how I knew it was time to get some mobility help:

1. I would say "THANK GOD" when I would find a chair I could take a break in while out shopping. Loudly. Every... time...
2. I was avoiding stores because of their size.
3. I was waiting in the car while my husband went into a store because I was too tired and they wouldn't have anywhere for me to sit and rest if I needed it.
4. I would get anxious and upset about a place not having chairs, or when I couldn't find a chair I could sit in.
5. I would push myself to walk till I wanted to cry (then I'd cry at home or in my car.)
6. I would see a long line and cringe (or leave without buying what I came for.)
7. I was changing plans to avoid walking too long.
8. I would be happy and grateful to sit on the window sill of a shop (not that my butt fit, but it was better than nothing.) 
9. I wanted to yell at someone if they got to a public seat before I could (ummm, it's not MY seat! I have to share.)
10. I was limiting how much I could buy per shopping trip because I didn't have the stamina to make it in the store for very long without taking a break.

My new kitchen stool arrived yesterday too! My husband already put it together for me and I used it last night while we were cooking dinner. It's fantastic. I feel all ready to go now.

Fantastic kitchen helper

I'm still working out every day and trying to watch what I eat. I'm determined to help myself out as much as I can. 

So far my needs/ability looks like this:

• Around the house, small store, around the block or 1 errand - I can walk alone. 
• Really big store (like Ikea), multiple errands, standing for a long time (like in a line) - I need Meg.
• Huge store (like mall), big store after exercising or large place (like the zoo, downtown or a big park) - Meg, or I'll need mobile help like renting a scooter or wheelchair.

I am going to talk to my doctor and check with my health insurance company to see if they'll reimburse me for some of the cost of Meg (or better yet, ALL!) But even if they don't it was very worth it. 

Just the 1 store we went to after I bought her was a great experience. Before Meg I would have just sat in the car and waited for my husband while he went in alone (or pushed myself and been in pain and miserable.) But this time I went in with him and just sat down when I got tired. He kept looking and I was close by. It was great! I had zero stress too about if the line was going to be long or that they didn't have a chair. It was one of those "I didn't quite realize how bad things had gotten till I had what I really needed" moments.

Reminder to self: Don't let things go. Get the tools you need when you need them. 

Seriously? "Reduce Stress!?"

The #1 advice I read over and over again is "reduce your stress." These articles/books/blogs will often go to on suggest "take deep breaths" or "go for a walk." Now I'm not saying these things don't work, or that it's a great idea to try and keep stress down. But you know... life happens! Like this gem I encountered today.

Are you serious?

I spent an hour on a major company website filling out a detailed application only to have it eaten and vanish when I hit submit. That's real life stress right there. Not to mention I'm having to job hunt again after only being employed for barely a month. But I'm supposed to just not let it get to me and go for a walk?

Well, it's no surprise that I woke up to a bit of a flare this morning. I also was really busy this weekend. And despite my husband making me take breaks, I still managed to do too much. My hands hurt and were stiff. The worst since starting the Plaquenil. I was thirsty all night and just felt sore this morning. Oh! My face is also breaking out. Yeah that's the face of stress.

But back to job hunting for a second. 

This is a standard question all employers ask. I never thought much of it before today. (click on it to see it larger if you don't read chicken scratch.)

So I ended up checking "no" because the descriptive words they used were things like "substantially limits a major life activity." And frankly also because it's not their business. So far I can work around all of my needs just fine. If I required some ADA services or major accommodations that I couldn't provide for myself I might have checked "yes."

I really hate that employers expect you to disclose something so deep and personal in such a way. In fact, I think it's really awful. And there's the "s" word again, right? "What if I mark yes? Will they not hire me because I said I have a disability? If I mark no and later need accommodations will they fire me for not disclosing sooner?" These are real life concerns.

Another reason I marked "no" is that I'm still figuring all this out. Until I know 100% what's going on I don't think my employer needs to know. 

So yes, I try my best to keep stress at a minimum, but some days I'm more successful than others. And after 2 hours on a cruddy website I was rewarded with this alert.

YAY! PICK ME! PICK ME!

I've applied for 5 jobs this morning and I feel good about them. I'm hoping something will come through soon. Now excuse me while I go eat some breakfast (food always lowers my stress.)