How Much Can You Bear?

"Every time this happens," I told a friend yesterday, "it feels like the first time."

And that's really true. I've had this disease now for nearly half my life and every time it flares it feels again like I've never experienced it before. Sometimes the symptoms and onset of a flare look and feel so different that I'm just not expecting it to be lupus. This time I attributed my ill-feeling to my injured self and went about my life just as I thought I should. I've already had to modify so much in terms of activity since November that I didn't assume to find myself back here anytime soon. But it's unpredictable at best and back "here" I am. Sluggish. Steroids. Sleeping.

Blood work this week actually revealed that my compliment levels are lower than they have ever been...which is not so good. Thankfully I'm relieved as the low levels give reason for some of my recent behavior/symptoms. On of the most challenging things for me during flares - and this has always been the case...I've just never told many people - is memory loss. It's been terrifying sometimes. Literally forgetting where I am when at the same time I should know exactly. Not to mention just pieces of stories or my sister's consistent order from Panera. This go around I actually began making up imaginary birthdays for people in my life...well, just one, but I called her a whole month early and even sent her card. If you know Trisha, my best friend, you can simply ask her about my memory issues. She's got the most experience with that. She'll tell me stuff I should remember and tell me again and again and it's always like the first time I hear it. I'm sure it makes me interesting to have around, but it's not very practical on my end of the deal. For those of you who know I'm repetitive, this might shed some light onto the reasons why. Recently I've been realizing too that I think I have a harder time access long term memories - or just that they are not as vivid in comparison to others long term memories. I'm wondering if there might be a component of the disease involved in that because honestly it all just kinda seems to be fading. This was the biggest trigger this time. I just felt like I was going crazy. My doctor was steps away from having me evaluated for that before the blood work came back. So I'm relieved in a sense that it's only just the disease acting up again.

You all already know I'm crazy!

About a month ago, due the the injury, a doctor and I had a conversation around beginning to use a cane since the feeling in my leg is so diminished. I've been reluctant, though I've thought quite a bit about it. This last weekend my parents brought me home a cane from a trip to Canada where they visited family. My cousin who gave the cane to me has a German Shepard by the name of "Bear" so fittingly, the handle of the cane is a carved wooden bear. She gave it to me with the salutation, "Do you think you can bear it?" Cute. When I got the news of the blood results this week, I gave in to the idea that the extra support might not be a bad plan. And me and "Yogi" (uncreatively named by one of my co-workers yesterday) had our introductory day yesterday.

Walking with a cane made me feel an odd combination of disabled and distinguished. I never thought I'd walk with a cane, much less at 26. Maybe this early start means that I've gotten some sort of distinguished character award awaiting someplace; that this, the first piece of external proof, will make it sweeter to receive someday. I really have been through more than most people my age. And it made me ponder the condition of the souls of people who need assistance in getting around. Wheelchairs, walkers, canes and the like yesterday really took on a new meaning. My best friend yesterday told me that I really need to stop being so hard on myself and cut myself some slack. I think she's right.

I'm half crazy and walking with a cane!

People at work wanted to question it but I made it clear I wasn't ready for questions. I didn't really think that through that aspect. So when they took a second look or asked what happened, I just said simply said it was complicated and then, "Meet my bear!" Then smiled and walked on. Once yesterday a man who was visibly disabled greeted my happily, asked how my day was, and smiled at me warmly. It's odd. I've never really considered myself disabled, though I could have many times. But with an external aid, like a cane, things that cannot necessarily be seen become visible to others. I have a feeling that the next few weeks and months with my "bear" are going to be interesting in many ways.

So how much can I bear? I don't really know. I thought I was at wits end (and not the great place in the Odyssey Adventures of my younger years) and then this hit. So I guess I was not. Another challenge awaits which may complicate the treatment of the leg, which I was about to pursue. So there's more waiting. More praying. More discerning. More trusting.

All I know for sure is that God's not finished with me yet.
That's about the most sane piece of advice I can manage for anyone whose ever wondered how much they can bear. That and that getting a bear cane is pretty cool too.