What a Difference!

 A few days ago we had our holiday open house. The last one we did in 2021, two years ago. Here's me in 2023 (left) and 2021...

Even though I look happy in both and am smiling in both, I look a little weary and fatigued in the right one. And it's not just the natural hair. Although after seeing these picture I don't think I'll ever have anything other than black hair again.

I'm close to the same weight. My makeup is similar. But as my mom likes to say "You look about 20 years younger!" I feel about 30 years younger.

I'm savoring this Christmas season. All the bustle and time spent with family and friends. I've also been very creative this season. Doing pottery, making crafts to decorate my house, drawing on wrapped gifts. Even though we've been incredibly busy I've made time to rest too.

My husband even went with me to Yoga yesterday. He said he can see why it's so helpful for me.

What a difference two years, one year, five months, one day makes. I'm so happy to have my time back.

The Current Plan

I haven't been talking about RA much lately. The Cymbalta I've been on has really cut down my joint pain (and helped my mood to boot!) My symptoms had seriously decreased till the last few days. For me stress = flare. Fortunately this time it's a small one. I know what to do. Wear my compression gloves and take my foot off the gas of productivity and rest rest rest. That's the plan for today.

My Rheumatologist isn't treating my RA until neurology is done with me and I think that's going to be a while. He's not sure if my sudden muscle weakness and muscle fatigue is connected at all to my autoimmune system, or if it's something neurological. So this means I'm in some kind of strange limbo with my neurology team running endless tests to try and find a cause. So far, nada. Although they did find my brain tumor, so I feel a bit rude nagging them.

Here's where I'm at so far in all this "chronic illness" health mess that is now my life:

• Next Tuesday - My first full brain MRI post-tumor removal
• Next Thursday - My first electric wheelchair is coming
• Monday November 5th - My first day back at work
• Wednesday November 7th - My 2nd follow up with my neurosurgeon (my husband also leaves for a 3 day business trip. SADNESS!!!)
• Wednesday November 14th - The long awaited EMG on my muscles with neurology
• Wednesday November 21st - I meet with the head of neurology in hopes he has some new ideas

Did you catch that I also work? And apparently I'm supposed to do that AND all these appointments every... single... week... Can you read my frustration between the lines?

Honestly I wanted to quit after the EMG and be done with neurology. But my husband made a very good point. He said "This isn't a wrong order at Carl's Jr that you just shrug and take anyway. It's a major health problem and we need to do everything we can to get to the bottom of it." He's totally right (of course.) I'm just exhausted with all this and I don't know how long I'm supposed to keep on going with these endless tests and appointments? 

When you struggle with chronic illness, any illness, it's impossible not to have it just take over your life. My life has changed completely from what is was even just 9 months ago. I have to constantly gage my energy, spoons and ability and that alone is exhausting. Add my job and then, you know, important relationships and I'm spread very thin. As Bilbo Baggins said in the Fellowship of the Rings "I'm tired Gandalf, like butter scraped over too much bread." Word Bilbo. All the feels!

Illusive Sleep

With chronic illness comes chronic sleepless nights. For a while the Lyrica and Cymbalta were both helping me sleep. But I've noticed a pattern where the Lyrica will help for 2-3 weeks, then it's like I've adjusted to it and it doesn't help as much anymore.

The neuropathy in my legs and pain in my joints (toes, back, shoulders) keeps me up at night. I sleep with a Fitbit and although not 100% accurate I always feel it's pretty darn close. I can tell easily when I don't get enough deep sleep or REM sleep, or both.

This was last night's report:

SLEEEP! Why you no work!?

And this was about 3 weeks ago when the Lyrica was really helping:

I like how you can see the average "benchmark" range.

I pretty quickly went from hitting my sleep goals to being "atypical" even at night. Darn. Now I did just start a new job, but honestly I don't feel like that's affecting my sleep. In fact if anything I should be sleeping BETTER because I'm chronically exhausted.

On days I don't work it's less of a big deal because I can nap. But soon my 2 days a week will move up to 4 and then I'm worried. I have a message out to my neurologist asking about a dose increase, but once again it's been 4 days and I still haven't heard back. -sigh- They don't call us "patients" for nothing, right?

I'm Tired

I'M TIRED!!!

Not just as in "I need a nap" (but I think that I do.) I'm tired of all of it. I'm tired of looking up my symptoms online trying frantically to find some kind of answer for what's happening and why. "Progressive neuropathy, hand weakness, post INH treatment" is a common one. I look up peer reviewed journals, personal blogs, National Health Institute information. And trust me, I'm no hypochondriac. Quite the opposite. I "fake well" all the time. 

I do these things because knowing the name of your enemy is important. Why do you think names were always such a big magical deal in the stories we heard as children? If you know the name of your enemy, what it's after, what the plan is, then you can form your own plan and attack. To have no idea what it is that's happening to you, what's attacking you, is like fighting against mist. You just end up tired. 

Although I'm trying everything I can think of to help myself I'm still fighting against mist. I keep hoping for that one article or study that will suddenly bring it all into focus. But more and more I have to ask myself what I'm going to do if that doesn't happen?

I recently started a new job. It's a career that I've worked very hard for and it feels amazing to finally be here, earning money doing what I love. I'm lucky to be in a situation where I had the opportunity and means to figure out what my passion was and then chase that dream till it was mine. But I'm also a bit scared.

I'm scared that my body won't be "on board" with me working 40 hours a week. That I'll be too exhausted for anything other than work every day. That my weekends will be 100% recovery time. I'm worried "the mist" will try and take over what I love to do. 

I'm fortunate that I have a very flexible job and I'm in charge of my own schedule. That gives me a lot of options not open to many people in similar situations. But that fear in the back of my mind says "What if it just keeps getting worse? What if I just keep on declining and there's no magic 'thing' that puts me back together again?" 

My husband is fantastic (as I already shared) and doesn't hesitate to pick up the slack. He's also wonderful at reminding me of all the tools at my disposal. Like "speech to text" on my iPad if typing gets too hard. Or that I can just go to bed after work if I need to. We meal plan and shop together. I love to garden (when I can) and he's taken over almost all of the weeding duties for me. So it's very helpful having him to remind me of my options, hold my "paw" and tell me what a big brave fighter I am and that I can do anything I put my mind to. Even working 40 hours a week. Even (hopefully) finding some answers soon.

And now I wait for my new neurologist to call me to schedule an appointment and the results of my hand MRI. Waiting also makes me tired.