Walking the Walk

It has been thrilling feeling my body become more used to walking. With each adventure I can feel myself become stronger. I want to go further and off on dirt trails to see places I couldn't see before. The whole world is a shiny new toy that I yearn to explore.

BUT...

All these new movements also came with a side gift. A bladder infection. ACK! When I was first using my wheelchair a lot I had a bladder infection. My body wasn't used to sitting so much. Well, now she's not used to moving so much. I am a complex compound of beneficial bacteria working in harmony. But it doesn't take much for my body to be completely thrown off.

I'm guessing my 2 mile walk yesterday wasn't the best idea. But remember what I said about yearning to explore? Yeah... that happened. Today I'm sitting next to Max getting some non-physical work done.

Fatigue Rescue?

I'm still recovering from a recent bladder infection. Those strike me from time to time and are common with wheelchair users, especially women. I have an issue with my bladder muscles not wanting to let go when I... um... GO. It's called "retention" and that also puts me at a higher risk for infection. Hey... Aren't those tulips beautiful! I thought we could all look at something pretty while talking about bodily functions.

When I'm sick my afternoon "naps" (or "curse" as I really think of it) eat up more and more of my day. Makes sense. We all need rest when we don't feel well, but I end up sleeping my life away. 

I'm excited at the prospect of something new that might help me. Epicatechin. As I said before my neurologist recommended I give it a try. It's an over the counter supplement derived from chocolate, so why not?

This is what I went with.I've had three doses now and honestly can feel a difference. I took my first dose last night and indeed it did keep me awake! I took another dose this morning with a banana and another with lunch. I feel much less tired than I normally do at this time of day. Like how I used to feel if I ate some chocolate covered espresso beans. The thought of having found something that can possibly wipe out my 2-4hr nap every day for $38.95 a month makes me excited. I hope, hope, hope this stuff really does help and I don't just acclimate to it. 

What the heck body?!?

At 9:30AM this Monday my body decided to freak out. I was at work and suddenly felt zaps in random parts of my body that made my muscles twitch. It felt like being mildly electrocuted. I also felt very weak and dizzy. My vision blurred and I struggled to focus. My face felt more numb than usual and it was a challenge to talk. I held on for as long as I could, but finally texted my husband to come and get me. I was afraid to drive given the dizziness and blurred vision.

My gut reaction was to go to the hospital. Even to call an ambulance as I wasn't sure how far I could walk. But what would they do? What could they really do? I didn't feel like I had experienced a stroke. My heart felt fine. It felt like my Myopathy had suddenly gotten worse for God knows why or how? I have a rare condition and there's nothing the hospital can do about that other than test me for a stroke. It would be a waste of everyone's time.

Instead I had my husband call my doctor and talk to the advice nurse. They said to go to the hospital. I refused, laid in bed and cried. My husband comforted me and made me feel a lot better. All of this was very scary. My little dog also gave me comfort, refusing to leave my side.

She even lurked in the bathroom with me. 

I deduced that I might have a bladder infection and that could have sent my body into "CODE RED! SEND ALL ENERGY AND RESOURCES TO INFECTION FIGHTING!" I started antibiotics yesterday and am feeling a little better today. I hope to go back to work tomorrow.

It's terrifying how fast my muscles can just shut down. How even talking can become a big challenge. I know it was scary for my husband to see me like that too. Chronic illness isn't for the weak! Every day is some kind of new test. I'm so lucky to not have to go through any of this alone.

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.