The tough stuff...
I am not a crier--I can count on a single hand the number of times I usually cry over the course of a year. But there has not been a single day since early January when I haven't found myself in tears. The pain never goes entirely away and there are moments throughout the day when the intensity and unrelenting nature of it is just a little too much. I wear arthritis gloves 24 hours a day to help with the swelling. I wear "accommodative" shoes (think orthopedic, but one level closer to regular-people shoes) to make walking less agonizing. There have been so many changes so quickly. I'm adjusting but it's been tough.
The good stuff...
I have a great family. No, a really great family. We had a family meeting a few weeks ago to discuss our new situation and how to make it work. The whole clan has really stepped up. They cook meals and haul laundry around. My husband has learned to instantly recognize my "I can't get this jar/box/door/bottle of medicine open" face and jumps in to help without needing to be asked. The kids go grocery shopping with me so they can push the cart and get things off shelves and carry the heavy bags to and from the car. My son even conceded defeat in an impromptu "awkward dance" competition we had recently. Let's face it, when your joints stick and pop and generally don't cooperate, "awkward" is the name of the game. We're finding our new normal as a family and it's gonna be fine. In fact, it's gonna be better than fine.
A few things I feel like I should mention...
- I do know that RA gets better once the right treatments are found. I promise I know that. The fact that I am struggling right now with the constant, unrelenting pain I am in should in no way be seen as proof that I don't see a light at the end of the tunnel. A person can feel discouraged and overwhelmed and exhausted in the moment and still have a very optimistic and hopeful eye on the future. That's me. That's where I am. I look forward to the better days and am getting through the hard ones a day at a time.
- I have had a few people ask how I type when I am dealing with debilitating stiffness, inflammation, and pain in my hands. The short answer: I don't. My computer has a built-in dictation program that I use to type emails, tweets, facebook updates, etc. I have a fancier, more accurate, more dynamic dictation program (one I researched quite extensively) to use for drafting manuscripts, doing edits, etc.
- The support I've felt from everyone has been amazing. I can't thank you enough for the very tangible reminder that I am cared about and thought about. I appreciate that so many of you were respectful of my request to not be sent miracle cures or easy fixes or "if you'll only do this, you'll get better." I promise you that a heartfelt "I care about you" does more to help than anything else.
- I debated including this on the list, but I'm gonna. I guess I'm just in that kind of mood. So here goes... Contrary to what a few people have written to tell me, bad things can and do happen to good people. Struggles and difficulties in life are not an inarguable sign that a person has done something to deserve the difficulties. If a person is plagued with illness all their life, if they aren't cured or the illness taken away, that doesn't mean they lack the willpower or the faith or the "goodness" to be cured. And that is all I mean to say about that.
So, thank you again. Thanks for enduring yet another long and rambling blog post all about me! I likely won't post again until my annual Holiday of Coolness post on March 17th. So... until then!