SLOW THE F*%& DOWN!

My mom says a lot of very true, on-point things. One of the things she is always telling me (has always told me) is to SLOW DOWN! I rush through everything. Even getting out of the car. She laughed the other day and said I'm just like the dogs (or are they just like me?) Always ready to jump out of the car before the brake is even on.

In my efforts to go slow I made a few changes.

I love the smell and warm glow of candles.

One has been reading at night rather than being on my phone. I'm not 100% perfect, but it has been really wonderful. I'm enjoying large print saucy reads and sleeping much better because of it. 

Total smut. But oh so fun!

Another change I made is switching from my Nespresso pods every morning to slow drip coffee. I read online someone doing this in an effort to have a slower morning. I thought it made good financial sense as well.

I bought this little 5 cup machine on eBay.

The other thing I've been doing for a while now is turning on the live feed from one of my favorite places in the world... Monterey Bay. I bet you thought I was going to say Hawaii? Well, that's number 2. But to see the otters and seals in real time. That stormy sea so alive. The people-less beaches. Well, it's a magical way to start the day. I pretend it's my window as I watch.

After my slow coffee by the bay I walk the dogs (if I have the energy.) And that's my easy morning. I know what a luxury it is to be able to indulge like this. I remember hitting the ground running when I worked full time. Then "luxury" time was my commute when I sang out loud in my car or listened to the news. Yeah... this is better.

Max, Margo and Mom. Living our best lives.

Let's talk about pain

Something I don't talk about is my pain. Not in my journals, here or in person. The last time I talked about pain specifically here was four years ago.

I do talk about it... LOUDLY with my medical team. However, even with them there's this sense of "Yes. You have pain. And? What do you think we can do about that?" Or at least that's what it feels like to me.

A lot of the time it feels futile to even broach the topic of pain. I know I have pain. Tons of it. But it's so subjective and hard to describe that I rarely do. How do I begin to talk about pain? There's the 1-10 scale.

This is the old-school traditional one that's useless.

My pain is usually a 6 all of the time.

Although this pain scale is better, it's still not perfect.

The last time I saw my muscular team I let them know ahead of time that pain was the number one thing I wanted to talk about. Even then I had to bring it back up at the end of my appointment. A quick medication review and she stated "It looks like you're already maxed out on meds. Have you tried acupuncture?" That's every doctor's answer to everything. Physical therapy and acupuncture. 

y'all make me tired!

Instead I asked for a referral to the "pain clinic" I'd heard about vaguely in the past. Like a hushed secret from someone. I had no idea what it meant, but it had the word "pain" in it so I figured it was at least worth a try.

Now here comes my least favorite part of all medicine.

Once at the mythical "pain clinic" I was asked "Where is your worst pain." "Well... my whole body! Let's start there!" On the meticulously filled out paperwork I clearly stated that I have 

• Burning pain
• Pins and needles
• Aches
• Soreness
• Pulling
• Throbbing
• Stabbing

All of these are from different parts of the body and I'm guessing have some different causes such as neuropathy, arthritis or my muscle disease. But I chose my back as the worst. She poked and prodded and yes... "elicited a pain response." That's medical jargon for "hurt me." Then came up with a plan to treat that specific pain.

Insert eye roll here.

I am not a single issue or body part. I am a whole body. A person. So why the medical field insists on treating individual body parts I will never know. It feels incredibly frustrating and antiquated.

I agreed to try a procedure called "dry needling" on my back. I'm hoping it helps with the chronic pain I have there. I guess the rest of my pain will have to watch on in horror. "Let this be a lesson to the rest of you!"

My second "pain clinic" appointment was with a social worker. It was interesting. He recommended some books to me and a support group. Unfortunately the group meets smack in the middle of my rest time. I told him if they start a morning group I'd be interested.

He also wants to meet with me over the computer to go through some CBT techniques for pain. I'm guessing I already know them all, but I will try to keep an open mind. 

I bought the book he recommended:
You Are Not Your Pain

The pain community is big into mindfulness.

I appreciated the reminder that it can be a tool. One that I stopped using a long time ago but am open to giving it another try.

So although I felt heard, it was also frustrating. Other than taking opiates, which I have zero interest in ever doing unless I'm actually dying. It feels like there's few options.

What helps my pain is:

• Distraction (eating, petting my dog...)
• Heat
• Gentle movement (stretching)
• Rest
• Massage (from my husband)
• Salonpas, Ibuprophen
• My Lyrica, Cymbalta, Amantadine & Baclofen

I'm also trying to talk about pain more and let my husband know when I'm in pain. I thought maybe like anxiety and depression, pain likes silence. So I'm working on that. 

What Happened to "Plan Kick Ass?"

Plan Kick Ass (or PKA as I call it) was way-sided by the introduction of Plaquenil. I stopped taking my supplements, except for Vitamin D (because my doctor recommended that one) and I didn't have the energy to make my own juice. I did however keep up with the new "chemical free" beauty products and gave all my old stuff away to good homes. I hate waste!

View from my bed

I think today I have the energy to make some fresh juice for my 10AM snack. It's not just making the juice that's so tiring. It's washing the produce well, making the juice and cleaning everything up and putting it away. Just like going grocery shopping in itself isn't the real spoon sucker. It's driving to the store, walking all over and putting stuff in the cart, chatting with the checker (or people you run into that you know), loading up the car, driving home, putting it all away. MAN! I'm tired just from listing what about it is tiring! Well, juicing is a lot like that. There's a lot of steps involved that all = exhaustion.

My other favorite place to be.
The living room couch (complete with cozy quilt.)

So like all things in my life I've learned to modify PKA. I got the handicapped parking plaque (and I've been so thankful that I did!) I'm asking for help when I really need it. I'm letting all the little things go that I used to feel I "HAD" to do every day. I'm savoring time with my husband and doggies. And I'm trying to be more patient.

I've been finding a lot of support in books. My latest find is "How to Live Well With Chronic Pain and Illness" by Toni Bernhard. I think I found this book by just putting "chronic illness" into the search engine at my library. Actually from home, then I request a hold on a book. That way I just have to run in and grab my hold stuff. That's another modification I've made.

Even though people are all so very different, it's helpful reading someone else's experience and what has worked for them. Toni is very frank in her book about her struggles, but does so in a very hopeful/helpful voice. I'm enjoying it and plan to read her first book "How to Be Sick" next.

Alright. It's snack time and I'm off to try juicing. Wish me luck!

Plan Kick Ass As of Now:

• Eat a little something every 2 hours.
• Rest and nap if I feel the need.
• Wear my compression gloves to bed at night.
• Continue being as chemical free at possible with products.
• Try to eat anti-inflammation foods.
• Take Vit. D & Magnesium daily (for muscle pain.)
• Go slow and save spoons.
• Drink lots of water and herbal tea.
• Be loving towards myself.

Vindication

I'm reading through my new copy of "Living with Rheumatoid Arthritis" and I come across this...

It says:

"In fact, many people with RA say that they just don't feel well."

This was mind blowing to me. Ever since my treatment for Latent TB that's exactly how I wanted to describe it. That I "just don't feel well." That something is wrong. The book goes on to discuss how RA is thought to be genetic in base, but that it's "triggered" by something environmental like a virus or bacteria. Then it goes on the specifically name TB as a potential trigger.

My mind was blown.

Vindication right there. I'd been telling my doctor and neurologist for over a year that something was wrong. That maybe I should see a rheumatologist. That I was having "stocking and glove pattern neuropathy." The neurologist, rheumatologist and my doctor told me that you don't have neuropathy in RA, but this book clearly says that you can. In fact the "stocking and glove pattern" is the most common type of neuropathy that goes along with RA. VINDICATION!

I can't begin to explain what a relief it was to read all of that. That a serious illness (like Latent TB) can trigger RA. That neuropathy can happen. That RA isn't always perfectly symmetrical (my right side is far more affected then my left.) All of these things in black and white. 

So now I have a NEW neurologist that I'm seeing at the end of June. Though the DMARD I'm on is really helping the neuropathy. It used to wake me up every single night, typically many times. Now I can sleep through the whole night, which I haven't done in about four years. I also spoke with my primary care doctor about getting a new rheumatologist. 

I was right and these specialists were wrong. I'm so glad I stuck with it and refused to back down. I was determined to solve what was going on with my body and now I have some answers. Best of all I have a treatment that's helping.

So trust your gut. If you think something's wrong, don't rest till you get answers. Don't let it consume your life, but also don't just let it go. This is a tricky balance, but one that's incredibly worth it.