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!