Trying Something New

I will never stop trying new things and tweaking my existing treatments to try and be as pain free as possible. Yesterday I tried something brand new. "Dry Needling." 

The whole procedure was fast. It took about an hour from start to me leaving. I had "ultrasound guided dry needling" done to some problem areas in my back that are tight and painful. As I understand it the point is to dig the needle deep enough into the muscle a few times in order to start an immune response from the body. The body then sends healing resources to those muscles and they heal looser and improved than before.

Here's how my day went.

I woke up at 6AM to be ready for my 8AM appointment.
I wanted to be early enough to put on a little makeup and not be in a rush.

I gathered my paperwork that was sent to me ahead of time.

The nice lady who checked me in said it was the first time ever someone brough ALL their paperwork already completed with them. I believe it. I am THAT patient.

We waited in the lobby till 8:15. 

I miss crappy lobby magazines.

I was checked in and prepped for the procedure.

I brought my air pods and audio book in case I needed it.

Oh yeah! And my "fidget cube."

You can see it in my hand.
I'm throwing a chaka and ready to go!

Between stretching and showering I slept with my own personal guard on duty.

I woke up at 6PM to see this little bed bug peeking at me.

I was able to stay seated in my chair and just lean over a bedside table that was wheeled in front of me. I appreciated that. My blood pressure and heart rate were monitored the whole time. An ultrasound machine was used to make sure the needling was happening at the best muscle depth. Not to shallow and not too deep.

Some of my muscles spasmed during the process. I was told that was "good." Ok. When they did some spots on my neck and shoulders it didn't hurt at all really. As I anticipated it hurt when they did a bad spot on my lower right side of my back. I can compare it to when you're at the dentist with a sore spot and the hygienist pokes it just right to send you through the roof. It felt like that.

They used topical lidocaine on me and that's all. Again, like the dentist. They said if I was "unable to tolerate it" then they could have "injected something." I tolerated it. Honestly it wasn't any worse than my Botox for Migraines. It just had a longer after-pain that left me exhausted. Although I did get apple juice at the end. I don't get juice after Botox.

I'm supposed to go back in 6 weeks for another treatment. I will say my neck and shoulders, although still tender, do feel better. My lower back "spot" feels pissed at me and just as bad if not worse. I'll go back for another treatment and hope that it is helpful.

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. 

Back Breaking Work

My back MRI results came in very quickly. As for the MRI itself, let me just share that it was my second experience ever of having my back hurt so much that it went into spam. A 90 minute full back MRI is no joke. I used every self-soothing resource that I had in my big bag of tricks and still almost had a full panic attack (just from the pain.) I'll be avoiding those in the future as much as I can. But, the results were useful.

Always make yourself a "cheat sheet!"

My back isn't much worse than it was 17 months ago. The biggest changes were in my lumbar area. I have a fissure (that's new) and a "disk protrusion" that's hitting a nerve. That's coincidentally the most painful spot in my back. 

The results can be very hard to read, so I found "mapping it out" on a spine printout to be really useful. I'm not a doctor and always have to look up what all the words mean and turn it into English. Then it goes into my personal medical binder for future medical appointments.

The bottom line is that they found nothing that would explain my muscle weakness and muscle fatigue. That means it's likely not coming from back problems, but from something else (like RA?) 

This Wednesday I see a new neurologist, so hopefully she'll have some more insight into the mystery that is my body.

The Last Time...

I've been having the feeling lately that there are many things I'm doing "for the last time." I'm torn between being at peace for this because of the pain and discomfort they cause and mourning the loss. Let me be more specific.

Last week I used a branch saw to trim back the neighbor's rosemary plant that was trying to eat our garden. It's something I've done many times before and never thought much of it. The saw is very sharp and it doesn't require much effort. But after 10 minutes I could barely open my hand back up. Yes, I had taken Ibuprofen before this. I told myself it was the last time I would even use that saw (or one like it.)

Sweet girl and her healing lovies.

Yesterday I went to the ZUMBA class at my gym. It's something I used to super enjoy and I've been trying to go slow and still do the moves. Well, both last week and this week the effort left me sore, stiff and with serious lower back pain even 24 hours later (and totally exhausted.) I think even with modification the moves are just too much for me (at least for right now.) I'm going to stick with Tai Chi or the pool.

Although neither of these activities are something I can't live without, they have one thing in common. They both felt very much like "LASTS." As in "that's the last time I'm doing ZUMBA." And that sucks.

I'm telling myself that this could be temporary and that my new rheumatologist could come across with some wonder drug that will wipe out RA (and not re-activate my TB.) But I also am aware that the opposite might be true. That this could just be a new way of being for me.

I am determined to embrace the CAN'S and move on away from the "cant's." But I also can't stop myself from wondering how many more "lasts" are in my future?

Life Hacks

Today I tried out some helping hand hacks that I've been reading about. I stopped by our local "dollar store" and picked up these small rubber bands and foam curlers to turn into grip aides.

I removed all the plastic and bagged them up.

Some of the blue foam I cut smaller and put in my purse. The pink ones are already a good length. I thought it would be good to have on-hand in case restaurant silverware is small and sharp (already something I've encountered.) Now they're all bagged up and ready to use.

Curious what I'm going to do with those tiny rubber bands?

I read about putting them on lids that are harder to open (like nail polish bottles.)

It really is a helpful hack! It makes them much easier to open. It was a bit tricky to get them on though. I think a lot of people may need someone to do this for them. I found it so helpful that I decided to put it on my most used "slick" cosmetics.

You can see I used quite a few on each. 

As for the foam rollers I put one on my favorite pen and toothbrush. The holes were too small for my toothbrush, so I cut it down the middle and slipped it on. It didn't work very well. I think for fatter handles it would be better to buy special arthritis grips.

Everything on rollers is WONDERFUL!

Another modification I've made is getting as many things as I can on rollers. Pushing and pulling is much easier than lifting and carrying. It's also easier on my hands. I adore my wheeling clothing hampers. I realized after my swim at the gym that a regular gym bag no longer does it for me. It's way too heavy when it's full of wet things. Enter the $29 roller bag.

Making modifications, changes and hacks has been hard actually. I keep feeling like "I don't need any of this YET!" But I noticed when I do use a tool or change things it feels so much better... than I have a little "oh" moment. I remind myself that I don't have to struggle unnecessarily. I can make changes that make things easier. 

My Health is My Job

I had my first physical therapy session yesterday. I tried to keep any open mind and I'd say it went well. I learned quite a bit and am glad that I went. I'm going to go back once a week at least two more times and then see how things are going. We're focusing mostly on my neck and lower back (lumbar.)

(He's recommending I see an OT for my hands)

It was helpful to me to get another point of view on my body. The physical therapist was very knowledgable and said I'm having "systemic problems." Yup... I knew that one. It also inspired me to make a commitment that while I'm not working I need to treat my health like it's my full-time job.

My plan looks like this:

1. Continue eating a lot of fresh fish, vegetables and good foods
2. Workout in some way every day (Tai Chi for Arthritis video, swim at my gym, go easy in a fitness class, walk, whatever I can do that day)
3. Get plenty of rest
4. Drink lots of water (but not right before bed!)
5. Go low carb and high fiber
6. Keep in communication with my doctor and make my needs known
7. Attend all appointments, labs, scans, tests and try to keep an open mind
8. Be kind to myself, go slow, be patient and understanding
9. Let others help me when I need it and ask for help when I need it
10. Not keep my challenges to myself

I find planning and making goals to be really helpful. It makes me feel like I'm not just idling while I wait to start my new job. I like the feeling of "proactivity." I'm also ok to constantly refine my goals and adjust them to what works and what doesn't. For example I recently ditched "juicing." I love the juice and it was a good start to my day, but I just didn't have the spoons to spend 20 minutes to make 1 glass of juice. The cleanup alone was exhausting! So I modified my plan and I now buy a green juice with no sugar already made from the store. I'm sure it's not as perfect as making it yourself, but I modified and went with what I could do.

My husband and I have fallen into a great rhythm in the kitchen with dinner time. He handles anything too cold (because my hands are super temperature sensitive) and does all the chopping. I do the main protein and carb. This also keeps us on opposite sides of our dinky kitchen and out of each other's way. It's something I really enjoy doing and it works great for both of us. 

Life is all about learning and adjusting. Letting go of what no longer works for you and learning new ways to expand on what does. These last few months have been a major time of change, but I think I'm coping with it pretty well.

Exercise that doesn't hurt

I've been wanting to learn Tai Chi for years. Unfortunately I've been unable to find a class that works with my body. I'd attend a "for beginners" class and just leave frustrated and hurting. The videos I tried from my library were the same. But then I tried this "Tai Chi for Arthritis" video that I found on YouTube.

Ok. I still can't do the whole thing. Just the warm up. But I noticed that my muscles do feel better today. It could be a coincidence, but I'll take anything that might help. 

They always have a very long introduction.
This was where the movement actually started (in case you're curious.)
The intro is good to watch if you know absolutely nothing about Tai Chi.

I love that they have someone seated in the video.
That's my idea of "for everyone!"

Dr. Paul Lam has a nice soothing voice and he really does move slow and easy. He's very comforting. Very Mr. Rogers in how he talks to me (I like that.) Some other Tai Chi I've tried was crazy fast and actually hurt. Not this one.

My only complaint is that I wish the people in the video were more age diverse. Once again we get into "because it's for people with arthritis or movement issues we must only show seniors." How about a cute punk girl with blue hair seated in a wheelchair? Now we're talking!

I'm going to try sticking with this little video for a while and seeing how things go. I'm hoping for a little less muscle weakness and some increased energy and stamina.

Yesterday I read this article on Muscle Weakness and RA (it's a bit academic, but super informative.) At the end it stressed the importance of exercise with RA and how most people just don't/can't stick with it. Speaking for myself I know that it is supposed to help, but it also takes a lot of spoons and can make me feel sore (worse) for days. Here's a little excerpt and why I'm trying to find something I can do regularly.

Exercise as Therapy

Regular physical exercise, both aerobic and strength exercise, are recognized as an important component of the management of RA. In patients with RA, exercise-induced beneficial effects include increased force production and muscle mass, increased aerobic capacity, lower amount of fat mass, decreased inflammation and pain, and an overall sense of well-being (Häkkinen, 2004, Häkkinen et al., 2001, Lemmey et al., 2009, Sharif et al., 2011, Sokka et al., 2008, Stenström and Minor, 2003). Thus, exercise per se appears as an effective overall therapy for patients with RA. However, this requires that the patients are active several days per week, which is not the case for many patients with RA. In fact, Sokka et al., reported that out of 5235 patients from 58 sites in 21 countries, only ~ 14% were physically active ≥ 3 times per week (Sokka et al., 2008). Furthermore, Lemmey et al., 2012 reported that in their 3-year follow-up study of patients with RA that had performed a 24 week high-intensity strength training program, no one in the exercise group was still exercising. Thus, a challenge with physical exercise as therapy is to achieve sustainability and to engage the patients in regular physical activity for the rest of their life.

Help is on the way!

There's a quote floating around that I think most people have heard. It's misattributed to Einstein when really we don't know who said it first.
"The definition of insanity is doing the same thing over again and expecting different results each time."
Personally I strongly feel that sums up seeking out health care help perfectly. Each time I talk to or go to a doctor (or specialist) I feel like I'm just saying the same things over and over again, but expecting different results.

I messaged my primary care doctor late yesterday in frustration from the muscle weakness in my arms and legs coming back on. I had felt like it was getting better, but then it was back to being a bit worse. I messaged him asking if there's any way he thought the muscle weakness could be connected to my back problems. He messaged me back quickly (which I hugely appreciated) saying "Do you have pain in your neck and back?"

This blew my mind because:

1. YES!
2. I've had neck and back pain as long as I can remember (as in I literally saw my first chiropractor for back pain around age 5.)
3. I've told him many times I struggle with chronic back and neck pain
4. He requested a back and neck x-ray not that long ago
5. He gave me a prescription for 800mg Ibuprofen for back and neck pain
6. I mentioned it again when he gave me a referral to the first neurologist a year ago
7. I mentioned it again a few months ago when talking about exercise (as in "I'd love to do more, but it kills my back." To which he replied "I have back problems too" and that was the end of the conversation about my back.)

To be fair he's not the only doctor I've talked about my back issues with, so it could just feel like I talk about it endlessly when really I may bring it up once a year or so. I'm willing to give him that. After a bit more back and forth he suggested I try Physical Therapy. This was something I had in the back of my mind anyway for the RA, so I happily agreed. I think my words were "YES! I'll try anything!" 

When I got my x-ray results a few years back I made this chart for myself to see where the damage was. I'm a very visual person, so I found it incredibly helpful. My doctor called it "multilevel disease" which was the first time I've heard that.

On top of the lovely bladder infection (that's getting better by drinking tons of water and unsweetened, disgusting straight cranberry juice) I also had some painful sores on my tongue. I suspect it's from coming off the Plaquenil. My body's trying to grope its way back to homeostasis (or something like that?) 

I gargled with salt water last night and it's feeling better today. 

Can you say "cootie monster?" 

I have cooties.

Despite all my complaining, I'm actually really relieved. I'm glad that I have a doctor who I can message and he gets back to me so quickly. I'm glad he had a new suggestion (something we haven't tried yet.) I'm glad that he thinks my back problems could be contributing to my other issues and that it seems like he really heard me this time.

And despite what it sounds like my life is much bigger than just all of THIS. I'm making some lovely salmon and rice with salad for dinner. I've been studying all day for a test I have to take this Wednesday for my license. I had a lovely e-mail exchange with a friend today. I'm seeing some family for lunch on Friday (hopefully to celebrate my passing of said test!) And I'm rocking my favorite pajamas as I type. See! Not so bad at all.