Under Pressure

Crunchy and popping shoulders brought me from my slumber before sunrise. What disturbing and unnatural sounds! I’m surprised it doesn’t lead my dogs into a protective barking frenzy. I was able to go back to sleep and woke up again to terrible dog breath coming from either side. Ewwww! My husband was up already doing his normal morning routine. Why didn’t the dogs ask him to let them out? Grrrrr. Crunch-crunch-pop-pop-growl-growl as I pathetically and desperately called to my husband to let the cute and stinky beasts out. At least the nausea and the swelling/crimson red in my hands faded from where it was yesterday.

I wanted to do yoga today. However, after reviewing many of the poses, I don’t think I am there yet. I think even Child’s pose could send me into the fetal position. I then quickly convinced myself I was not going to exercise today. I’ll just take it easy. I then looked down at my achy and flabby body and decided no, I must do something. Atrophied muscles will not be my friend! But, I’m tired and achy and need to listen to that! The turmoil!

A couple hours later I forced myself up and into my Speedo. The pressure from my suit on my hips and shoulders almost sent me back to hibernation. No! I will gain my endurance back! I gently tossed my hair back into a haphazard ponytail, slipped on my flip-flops, and hesitantly headed out to the car. I put down the windows to feel the cool fall air, put on my starred Spotify tracks, and made my way to the gym.

The parking lot was empty! Rad! The locker room was the same. So quiet! I could already smell the chlorine as I tossed my dress into an empty locker and made my way down the slippery hall to the pool. The old man coffee club meeting was in full speed in the jacuzzi but, the creeper was not present. Whew! The pool was especially empty and I joyfully made my way in.

I survived another 20 (or so) minutes in the pool and I am wiped out! ZZZzzzZZZzzzzZzzzzz…
This will get easier. Right?

Finding Quiet Through Grief

Rolling grassy hills, daisies… did I pay my student loan bill? …irises, sunflowers… oh, I have to call the trash company! I can’t believe someone would steal our trash bin! …a cool breeze blows as the sun heats my pale skin… I have to let my dogs in before they plow through the door… what was my visualization again? Oh well. I’ll try again tomorrow.

Visualization and meditation are like an unsuccessful diet where I fail and commit to trying again tomorrow. My mind enjoys being overactive and problem solving- especially in the dark early morning hours. 2am is a great time to wake up and develop an idea for a painting and wonder why I have not received my new ATM card.

I’m trying to learn the art of quieting my mind. Although it is a great challenge, I believe I have made significant progress. Although I have felt the most pain, sadness, anger, and stress, I feel the calmest I have felt in years. Perhaps because some of my worst nightmares have come true and it’s not as awful as I would have imagined? Or is it because I am no longer employed at an abusive job? Or is it because my frequent sickness, fatigue, and pain is finally explained? It’s unbelievable that my worst pain could be my greatest relief.

Quiet is kind, peaceful, loving, green, grassy, flowery, hilly, and free of rushing and overworking. It’s a cottage home with a wrap around porch filled with necessities, love, and inspiration. There I did it!

Pity Party

Anger, tears, fears, my husband, mom, and ice cream are all invited to my pity parties. My pity party ice cream is the most important invitee. It is vegan and homemade by my superhero husband. It’s vanilla ice cream with peanut butter swirls, and best of all chocolate covered peanut-butter filled pretzels. Wowzas, it is delicious! Heaven on earth even. With each small bowl, salty and sweet bite my anger, tears, and fears fade. My other senses awaken and I realize if food like this exists, life must not be too awful. I have to say, I’m not even the biggest sweets enthusiast but this food is on another spectrum. If you have an awesome caretaker and ice-cream maker check out a similar recipe here

This post is less about ice cream (I think) and more about the importance of feeling the wave of emotions that a chronic illness brings. I received a comment (thank you Rebecca) which reminded me of my pity parties and brought attention to my current plight. Since April, I have had less pity parties partially because of I am experiencing less 10 out of 10 severe pain and I am coping with RA better. However, lately Saturday nights through Tuesday mornings I have found myself in full fledge pity minus the party mode. The methotrexate at 20mg hits me hard. It’s awful. I can’t even partake in the party ice cream because I feel too icky. It really kicks my ass. I can see it best through my husband’s concerned eyes.

With that being said, I know I will overcome the devastation this currently is causing me. So far I have survived the diagnosis, horrific 10 out of 10 pain, getting unfairly fired, acknowledging my disability, and this too will pass. As much as it feels methotrexate is trying to kill me a couple days a week I know it is actually slowing the progression of this terrible disease. I know I want my hands, knees, feet, hips, shoulders, etc. to remain in their current positioning (free of arthritis) and a couple bad days are a small price to pay. Right?

I work hard to fend off fears and the “what ifs” (with love, strength, pity, and pity parties) and live with my late great-grandmother’s mantra, “One day at a time, honey. One day at a time.” I’ve added one minute or hour at a time as needed. I’m sure she did too.

Going Slow in a Speedo

I quietly and awkwardly dove into the women’s locker room at the gym. Loud chatter of women echoed as people were confidently and comfortably dressing, undressing, showering, blow drying, applying makeup, and deodorizing. I tried to make myself invisible as I slid across the wet floor toward the lockers, took off my bathing suit cover, and shoved it and my sunglasses into the locker. I always forget to leave my sunglasses in the car! It was just after that when I discovered a magical hallway to the pool. Rad! Walking through the gym in my one piece Olympic style Speedo was not a thrilling thought and also an unnecessary one.

I went in unequipped with a lock so, I lugged my keys and towel with me down the slip and slide hall to the pool. Inside a saw a jacuzzi full of 65+ men and the pool with about 6 women ranging in ages. However, I was definitely the youngest. The younger folks wore caps, goggles, and stayed in the athlete swimmer lane. It’s okay. I’m okay.

Apparently, you’re supposed to douse yourself in the water in the provided shower prior to entering the pool but, I ignorantly missed all signs. In my defense, I showered just prior to my visit. But I do have to question, what does the water really do anyway? The pool felt icy just as I remembered it feeling as a kid. My dad had a pool while I was growing up and I suddenly heard him say, “Just jump in. You’ll get used to it.” Although, I didn’t jump I quickly walked in immersing myself into the weight lifting water. The relief the water provided to my joints was rather amazing. Can I live in the pool?

I had just walked laps in the pool and jogged in place when a 65+ man from the jacuzzi hopped in the pool. He swam by saying hello rather creepily. I greeted him back making it clear I was not interested in conversation. He flirted with a 65+ woman who had given me a warm smile when I first got into the pool. “You’re naughty!” I heard her tell the man. Apparently, he had told her a dirty joke. Really? Each time the man swam by me, my skin crawled.

The jacuzzi was nearly empty and it was time to warm my joints. As I took a short walk to the jacuzzi I heard the woman tell the creepy man, “You can’t do that… you’re married.” Oh look at the time. It was time for lunch with my husband. I hosed off and re-entered the locker room without my invisibility cloak. I can be part of this experience.

Minus the creepy man and poor endurance, my pool experience was really wonderful. The pool took the pressure off of my achy joints and gave me a sense of freedom. I’ll definitely be back. I’m also considering the Yoga class on Thursday. Although I must admit, I’m a little afraid. Afraid of learning my new limits, what all this time of being mostly immobile has done, and starting a new life.

Olympic Swim

I felt a funny misalignment feeling while walking on the treadmill at the gym. It didn’t hurt per say, it just felt funky. Eh, I’m sure it’s nothing. I continued for 10 more minutes before moving onto the bike.

It was something because my hip has been painful/sore since. I was only at the gym for 25 minutes and did not do much. How frustrating! I took a week off after that.

Tomorrow, I will be super daring and will try the pool. For some reason in my head it feels super intimidating. I visualize walking into the pool space with Missy Franklin, Allison Schmitt, Michael Phelps, and Ryan Lochte as the almost 31 year old who gets tired just walking to the pool. Rational? Absolutely not. However, this will be an Olympic like swim in that I will be nervous and in a one piece bathing suit.

I’ll keep you posted.

Finding My New Life

My weeks were spent working and my weekends spent gardening/landscaping, interior decorating, cooking, or creating art. More than anything I love the satisfaction of working hard and turning around to see a visually satisfying result. Things such as an area cleared of weeds, new plants in the ground, mulch spread in a garden bed, a drawing/plan for a room in my home, painted walls, new yummy and creative recipes made and posted on my food blog, and completed artwork all aided in my confidence and self worth.

Now my gardens are filled with weeds, plants pathetic and neglected, my home is filled with tired furniture and incomplete projects, food blog sits idle, and I’ve only helped cook a few meals that require very little effort in the last few months. I feel that everywhere I turn it is a reminder of the hobbies I once enjoyed. Well that’s rather negative!

But, it is something I must face. I was recently told that I have to learn to let go what was and find my new life. I have always thought of myself as one that can handle change fairly well until now. I suppose I should have recognized that change is wonderful when you have a choice. Seemingly waking up one day with pain and disability is not the ideal way to create new interests, hobbies, and possibly even a new career.

Although I have yet to wake up eager to find new interests, hobbies, and career choices it has been on my mind all day today. RA has opened my mind and created an awareness that I have never thought possible. Perhaps it will do the same in all facets of my life? On a positive note, I am still able to paint! I am also learning the importance of taking frequent breaks.

I must forgive myself for what I can no longer do, look ahead to find a new way of life with purpose, and more importantly- live more!

When the Invisible Becomes Visible

“None of these people are even disabled. I don’t see why they get seats,” a man shouted from behind to his friends. “My wife has an incurable disease!” my normally mild mannered and positive husband screamed back. He then went on to tell the average height, short red curly haired, middle aged man that he cannot judge people. He went on to explain that illness is not always visible and he shouldn’t make comments as he did without knowing what people are going through. Wow!

The setting was a rock concert in downtown Los Angeles, at the Wiltern Theater. It’s an indoor theater with multiple bars within and general admission (no seats, unless you were on the balcony) atmosphere. A review of the show described the audience as young adults and middle aged folks who seemed equally confused with the presence of the other.

When my RA symptoms obviously presented themselves back in April my husband coped by buying lots of concert tickets (Patrick Watson, Glen Hansard, Tallest Man on Earth, My Morning Jacket, Wilco, Florence + the Machine). Concerts are one of my favorite things to do. They truly rejuvenate my creative spirit. However, now I’m constantly having anxiety over not being able to walk, dealing with stairs, or having pain that’s too intense to enjoy the experience.

My husband called each theater in advance to see how they may be able to help. We learned that each theater had ADA seating which has eased my anxiety. Our first experience at a tiny dive venue was great. Our second experience was not nearly as great. My husband and I were separated for a period of time to “make sure there were enough seats for the disabled.” There was plenty of space and it was absurd and upsetting. In the end, my husband was able to join me. Our latest experience was okay, until the unsympathetic and judgmental crowd behind us nearly ruined it. Yes, we get the best seats in the house but I pay the price every single day.

This brings me back to the moment where my husband told off the rude and obnoxious man standing behind the ADA section. Until this moment, I had not realized the toll RA was taking on my husband. He is not one to speak up in hostile situations. He is stoic, supportive, calm, positive, caring, and kind. He has remained this way since my thumbs stopped working and is the greatest caretaker. This moment helped me clearly see the big picture and understand the anguish he carries inside. Although, it was upsetting to see him so angry it was also a relief to be protected and truly understood. He truly lives with RA too and that was invisible to me. In some ways, I was as ignorant as the man behind us.

The man actually apologized for his ignorance and proceeded to kiss ass. I thought wow- thanks to my husband that guy really learned something tonight. If people speak up it could really make a difference! Then I saw him seated in the available ADA seats later in the night. Ugh. Then again, maybe some people will never get it.

In this blog I figuratively take my hat off to my husband, mom, step-dad, and honorary-father. Sometimes I feel so alone with my disease. But I have to acknowledge the unfair toll this has taken on my family who cares so much. Each of them have offered to take the pain and meds for me. They would literally do anything to help. Despite it all, I am superbly grateful and lucky. Life is really a beautiful thing.

Too much hair?

I have felt ugly for a long time. The purpose of a shower has become more about heat than cleanliness. Some days being clean and well groomed is more of a challenge than it is worth. Hairy legs are beautiful, right? Love it or hate it, they have become an important part of my look lately!

Speaking of hair, the hair on my head became out of control too. In the middle of the night for months it has found ways to wrap around my neck… multiple times even. However, getting a haircut terrified me. I have had an unhealthy attachment to it since it has been falling out and have also been too scared to commit to an appointment. What if my neck, shoulders, or hips hurt too much?

The maintenance of my long thinning hair along with nighttime stranglings finally outweighed my fears and I made an appointment. My fear of pain on the day of my appointment came true but, thankfully it was primarily my feet. I have had multiple dreams about cutting off all of my hair to take the weight off my neck but, I decided four inches would be plenty.

My hairdresser is absolutely amazing. Not only is she talented but she has a wonderful memory, kind heart, and found a way to make me feel beautiful for the first time in a very long time. I went home with achy joints, hairy legs, model hair, and more importantly a giant smile! The look on my husbands face when he saw added to my joy! Maybe I’ll even shave my legs next! Is there a salon for that?