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.

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.

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.