Morning Pain and Progress

Let’s not say my bubble has burst, but it certainly is deflated.  Thursday I was delighted to get the news that my heart was fine.  I was appropriately grateful, but the irony of being overjoyed at being back to my baseline of daily poor health has not escaped me.  Currently it takes me about four hours of preparation to be able to leave the house.  I wake with pain in almost every joint and muscle, and I have to eat breakfast and take my medicines and wait for those dissenting parts to get it together so that I can bathe, dress and be on my way.  If I do go out, I’m pretty good walking around for a while (maybe the grocery store and post office), but once I’m back home the pain in my feet makes me want to slice them off neatly at the ankles.  I have reached a more painful phase this year, and it requires managing my medicines and activities differently. 

 

Yesterday, after my morning prep, I spent five minutes pedaling (did you know pedalling is also correct?) my new exercise bicycle.  And I was proud of that.  As you have to be, when it is all you can muster.  I do my five-minute stint with the same seriousness and intent as someone doing ten-mile runs to train for a marathon.  I know that if I want to get to that magical 30 minutes per day of aerobic exercise, I have to start with what I can do.  That would be five awkward, tortuously slow minutes.  If I’ve learned anything in 16 lupus years, it’s that you can’t psyche yourself into thinking that small efforts aren’t worth it.  You have to force yourself to perform the small stuff, and to appreciate that you are able to go that far. 

 

There are some dangers to living like this.  There were times, when I was still in practice, when I wanted to answer a patient’s complaints with “I don’t want to hear it unless you’re in more pain than me.”  It gives me heartache now to see someone wasting their ability and complaining over things they can control and overcome without even breathing hard.  I try mightily to see other people’s struggles as real and significant, and to not say “if I can do it, surely you can.”  I do find that I must work overtime to really see other’s lives, and appreciate that they have their demons and struggles, and to remember that the level of difficulty can’t be judged from the outside.  Still, that teeny voice inside me is sometimes shouting out “get a life!”

 

Mmhmm, Essie is not sounding like such a happy camper today.  It’s a reality check day.  I am not one to be in denial about myself (only about others when I want to find them “okay”).  I walk a very thin line between accepting where I am and who I am, and being over-critical of myself.  When I fall over into the over-critical territory, I blame myself for every facet of where I am.  That is a deep hole to put yourself in, best to be avoided at any cost.

 

From my gloomy tone, you might think that something awful was going on in this house, but no.  My daughter is here for the weekend.  You know I always rejoice to see her.  My youngest (and last) host son is visiting.  We’re looking forward to dressing him up for his prom tonight, and taking all those home-grown photos.  I have to remember the details that I’ve learned for the boy side of things, like having him clean up my car before he goes to pick up his lovely date.  My daughter discovered that he hadn’t ordered a corsage for the lovely date (why?!) and corrected that on her own.  We are such good prom moms! 

 

Yesterday I bound off the snood, and I have photos.  Like most just-knit lace, it is totally unimpressive.  It is a shapeless piece of material with lots of holes.  I’m going to block it today, wet it and stretch it out and shape it.  When it is dry, I will sew up the seams and show you again.  More knitting magic! 

        The top photo has accurate colour (yaaaay).  Have you ever noticed that when you spell it with a “u”, the word colour takes on a broader dimension, a fuller range, appropriate for the vast spectrum that it describes?  You can see that I am preoccupied with my words today, a normal but publicly repressed state of being for me.  I am an editor in the true life of my dreams.  I think I mentioned before that this yarn is Koigu PPPM.  I have no idea what the colorway number is.  It is about three years old, and Koigu does dozens of them. 

 

Hmm.  I think I’m good to walk to the kitchen for more coffee, and for that bath.  Gotta go knit today.  I am sooooo happy for that!

 

Peace.

 

 

*Housekeeping:  You may have noticed that I’ve recently begun to categorize my blog as “African-American” along with “lupus” and “knitting”.  There are some efforts in the blogosphere to define particular groups of writers, with an attempt to enhance the readership’s knowledge of our presence.  I find the same with medical blogs, and have applied for some ownership and standards certification there. 

Just Another Manic Tuesday

I got out of bed this morning and nothing hurt.  I walked to the kitchen, took out the oatmeal that I had already prepared in the rice cooker, added some yogurt, fixed a cup of coffee…still nothing was hurting.  This is a cool day.  It doesn’t mean I’m cured or that the current flare of lupus activity is gone.  It means that I’m starting this day with a bonus, the blessing of not having any pain.  I don’t dwell on the pain because it is so frequent and diffuse, and because I have long since come to terms with the fact that it goes with the disease.  But I do notice its absence. For myself, I’ve made the decision to treat pain only when it is really severe or when it truly limits me from doing something that feels necessary.  I can’t use up 90 pain pills in a year, and that’s usually a modest month’s prescription of the pain medicine my doc has prescribed.  My focus is to treat the disease that is causing the pain, and to stop the long-term consequences of both the disease and the medications that I take for it, so it seems silly to waste pill-taking that doesn’t help the disease.  I know that doesn’t work for everyone and I never prescribed for others based on my own pain tolerance or philosophy, but I have certainly described that philosophy to others.  I cannot feel like a good doc if I concur with someone’s desire to treat only the pain and not try and get at the underlying cause if it is treatable. I think that desire to understand the disease, to know why a certain disease affected the body in a particular way, and what part of that caused the pain or disability or other visible manifestations of the disease, was the strongest reason I chose medicine as a career.  That went hand in hand with knowing how to affect the disease, change its course, or cure it.  Cool stuff.  But there are a number of other reasons that choosing medicine happened, and today is not the day for that discussion.I am still in the process of posting new items in the store.  In case you haven’t noticed my scattered references, you can see it at http://www.essiewb.etsy.com/.   Yesterday I photographed some items on my mannequin, Estelle, and then measured them and began to post.  Dayna offered to help and I turned the laptop over to her and walked her through the posting procedure, and she enjoyed it and turned out to be very good at it.  She knows how to breeze through the software, she is good at describing my handmade products, and she types like a demon.  She taught herself how to type as a kid and it is totally unorthodox and quite effective.  I didn’t want to “fix” what wasn’t broken so I never sent her to a keyboarding class.  Anyway, we got started on the posting and will continue today.  It’s bright and sunny and I might take some of the photos outside. While we watched the gorgeous Denzel Washington in Deja Vu last night I finished the second block in the second strip of Dayna’s afghan.  I was a little apprehensive about the stitch I used, but when I finished and started the third block I could see that it was going to fit in beautifully.  Sometimes when you are knitting it seems that a project is turning sour and it’s tempting to put it down, but it can be a transient spell of needing to push on and see the more completed perspective.  Hmmm.  I probably could have used that as marriage advice.  That is soooo the stuff of a million later (much later) posts.For now, the sun leaking around my curtains is calling to me, and I want to grab my camera and some products and make some photos outside on the deck.  I hope you have something to do today that will be a pleasurable challenge.  (Yes, I did just make that dorky statement, and I meant every word of it!)Peace.