Another Saturday, Not As Mellow

I’m on the downslope!  This is perhaps my favorite time in the disease cycle of lupus.  I’m over a major flare, my energy is improving daily, and I’m able to increase my activity.  I feel like I’ve been released from prison after several months of false accusations and physical torture.  I have to survey the wreckage and handle it, but anything is better than the previous confinement.


The “wreckage” consists of all the things that I’ve missed or put off due to the flare.  Sometimes it’s more emotional, other times it is primarily physical.  Among the emotional issues this time is the separation from familly and friends.  I am so grateful to those that sought me out, came to my home during the worst of the flare, and weren’t put off by my inability to get out and meet.  I’ve missed seeing my little old parents, who rarely leave home for anything but doctor visits.  Physical consequences have been pretty large, too.  My house is cluttered and messy.  My organizing of the craft room stopped mid-stroke.  I didn’t finish my yarn de-stashing, and there’s at least one more box to go to the prison yarn project.


I wrote the paragraphs above at the beginning of the week.  Now it’s Saturday, and I have not taken the week as I should have.  With all the energy and emotion of my new freedom, I jumped into moving my daughter into her new apartment.  I shopped too much, walked too far, carried too many items…there was no moderation.  By Thursday I was wondering if I would have to stop in the aisle at Target and sit down on the floor.  My back and knees were dying.  I made my last purchase, got in my car, and vowed to sit out the next few days. 


My idiocy was compounded by the fact that I landed in a hotel that didn’t provide the accommodations and service that they have in the past.  My room was persistently hot (in a town that has been 90 degrees every day), I had to fuss to get my room cleaned, and there was an infestation of ycky little black crawlers.  I’d been there a dozen times and never had that experience.  I complained mightily, got a night comped, and moved to another hotel. 


Sometimes this lupus provides me with more challenges than I want to think about, but I have to sit still and think them through in order to handle them.  Right now, I’m noticing that the tiniest activity makes me sweat.  I am so out of condition that my body thinks it is running laps when I’m just pushing a cart slowly through the grocery store.  At the same time, I am holding onto fluid like a champ, with the swollen ankles and legs demanding a diuretic.  I’ve concluded that I have to moderate my activity, watch the unaccustomed salt intake (hey, I can’t cook here), and get some real sleep.  The chores of my trip are over…I can do this. 


I have been knitting all along, of course.  I completed the little girl sweater.  I love it.  You can judge for yourself:

Starting from the top, you see the whole front view, then a front placket detail, then sleeve detail, then the back view.  It is ready to mail.  I hope I’ll get a photo of the little girl who requested the pink and white, three-quarter sleeve, girly cardigan.  I always aim for one size larger for children.  That gives one year with a sweater or heavy shirt underneath, then one season of lighter coverage, and if we’re lucky, an additional season where the cardi can be worn as a top alone.  I now sympathize with my mom, who made those over-size, you’ll-grow-into-it calculations for six daughters.  An expensive piece should last more than a minute.


I remembered to photograph my girls when they were all together:

There they are-my daughter in the middle, with her sister and her niece.  The most beautifulest! 




6 Responses

  1. You have a lovely family!!

  2. Everyone and everything looks beautiful!

  3. Hi Essiewb,

    My name is Justin Guild and I’m a graduate research assistant currently working with Dr. Jeong-Nam Kim ( at Purdue University on a health communication study.

    Specifically, our research explores how information sharing behavior through online communities influences coping strategies among people with chronic conditions including cancer, diabetes, lupus, etc.

    I’m contacting you to seek permission to place a link to our online web survey on your blog to invite readers and other visitors to participate. The survey is purely academic in nature and takes no longer than 5-7 minutes to complete.

    The web survey can be found by clicking on this link:

    In the survey, we use the term “blog” to refer to any online activity where you might read or share information in communities such as personal web logs, internet forums, and discussion boards.

    The findings of this study could lead to better management capacities of chronic diseases as well as an increase in funding for research related to online communities.

    If you have any questions, or would like additional information, please don’t hesitate to contact me at

    Thank you for your time and consideration.


    Justin Guild

  4. I wasn’t sure how the white would look, but I think it works great. It will look cute on her.

  5. that little pink sweater – It is PRECIOUS.

    Then you just got more precious with those lovely smiles.

  6. So beautiful!
    I’m on a mission to start a list of little known bloggers. There are the superstars of knitting blogs that we all read. They get 50,100 and more comments. But there are so many good blogs, with great projects and ideas, that no one knows about. Soooo as I find them I would like to list them. Not that it will make a difference because I am one of those little blogs but I’ll feel better with blog world. I hope to put some kind of webring or a group on Ravelry together with my daughters help. More info to follow.
    Those in the group will place each others blogs on their blog lists. Let me know if you’re interested on my blog.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: