Beyond the Absurd: Life with Lupus
by Mary Kay Diakite, LMSW
Editor’s Note: Introducing Mary Kay Diakite, a dear friend since 1992. Mary Kay has graciously agreed to contribute her blog on her new life with lupus, which, ironically, kicked in big time on a visit to Milwaukee to see me and present at a Peace Corps conference in Madison the last weekend in March. Lupus is an autoimmune disease that none of us knows about until it affects us or people we care about. As Mary Kay does with all phases of her amazing life, rich in cultural, geographical and human diversity, she treats her latest challenge with humor, research and intelligent determination. Last year, Mary Kay also contributed to PeaceOfMind an article on reconciliation with the people of Iraq.
7/10/11 Ė A beautiful Sunday in the Bronx
It was another gorgeous weather day here in the Bronx, and I just wanted to make the most of it. So, we all decided to check out City Island, an island here in the Bronx which is more like a small New England fishing village, with water views and seafood restaurants and everything. So, off we went, Youba, Sabou and I on our little Bronx adventure. It was beautiful, the food was great, and Sabou LOVED being by the sea. I canít wait to get her to the beach this weekend in Rhode Island. Sheís so much bigger now compared to last summer, and Iím sure she is going to LOVE it.
7/11/11 Ė Dizzyness and Aura
So, today at work, something new happened. I was leaving the elevator and it felt like the whole world was moving and I had trouble walking and keeping my balance. I slowly progressed to the meeting room and literally grabbed the chair closest to the door, the first one I came to and sat down. I did not budge from that seat until the end of the meeting. Afterwards, I was completely fine. Just the weakness in the legs remained.
Then late that night, an aura showed up; my first one in almost a month. We are one week into the Prednisone taper. I see my doctor exactly a week from today. I am keeping track of all these symptoms, their frequency, etc, and will bring it to him next Monday.
7/12/11 Ė Learning to say no
So, today there were no symptoms to speak of, but something interesting did happen. I was offered a teaching gig at Columbia University Ė yes, an Ivy League, the kind of college I would never even presume to apply to. And the course they offered was International Social Work, my dream class. WOW! And this tiny piece of who I once was, working a full-time job, teaching at several different universities in the evenings, spending weekends preparing lectures and grading papers, returned. I love teaching. I love the classroom discussions, all of it. I so wanted to say yes. I really did. I mean, Columbia?
And then, you know, life happens, and I remembered that I canít trust my body. I canít trust that. even though it works today, it will definitely work tomorrow. I canít promise that there wonít be pain, that there wonít be cognitive problems. I canít promise that Iíll be able walk properly or use my arms, hands, fingers and wrists. And then I remembered all the doctor appointments, the support groups, the counseling sessions. And then I remembered my little toddler girl, and how difficult it was to teach in Spring 2010 when she was not even a year old and I was healthy. And then, I realized, itís time to say no, and just focus on me, my health, my family and my new job, and that is enough.
I had a long conversation with my colleague at Columbia, who reassured me that there would be other opportunities in the future and that she will always think of me. Just hearing her say that made all the difference. My long career of complete opportunism, grabbing at whatever interesting thing came my way, no matter how crazy-making and exhausting it turned out to be, is now over. I can trust that Iím doing enough. I can trust that now will not be the only chance I get. And I get to focus on me.
7/13/11 Ė Another aura just two days later
Today was a good day at work. No real problems to speak of. It was when I got home that weirdness happened. I was giving Sabou her dinner and then the aura started. It was very small and then grew and grew until it became all I could see out of the left side of my left eye. Very annoying. It was hard to concentrate. I told Youba that I was having the flashing lights again and just sat down. He took care of Sabou and I just rested. At some point, I just passed out on the couch, like unable to move. It felt like both my brain and my body were just taking a break. No headache pain, just really dull annoying stuff, but absolutely no energy either, and this aching and weakness in my legs that Iíve come to expect. When Youba was putting Sabou to sleep, he looked at me, I think I may have been completely still and staring out into space, and said, ďWhy donít you go to sleep too.Ē I took his advice, and headed to bed. It took a while for Sabou to settle down to sleep, and slowly I came back to life until now and I feel fine. So glad and canít wait to see the doctor on Monday. Youba said he could pick up Sabou from day care on Monday. Thank goodness.
7/14/11 Ė Bad Mood
Got home from a frustrating day at work, and picked up Sabou at day care. Sabou proceeded to refuse to listen and to constantly run away from me, like it was a game to her, but it was driving me crazy. I really just wanted to go home, but it was a fight every step of the way. And with these new GI issues, I have not mentioned as they are just annoying, and Iím sure medication related, I really just needed to get home, which didnít help my patience factor with the almost two year old who really doesnít understand anyway.
She went into time out, and my mood did not improve. I needed to pack the stroller and her and head out to do an errand, and while out, I figured weíd grab something to eat. At the local diner, which is not equipped with a changing table, she pooped. No way to change her, so I took the meal to go, packed her back up and walked home. Even though the weather was nice, I could still feel this weakness in my legs and in my arms. The arm weakness actually started after the last aura, was that yesterday? I didnít mention it, as I find I am getting tired of having to consciously think about and remember each and every new weird symptom. Tonight though, the arm weakness was pretty dominant.
I think Youba could tell my mood, and that there were limitations in my effectiveness at parenting tonight. He fed her dinner, hung out with her, and put her to bed. Thank goodness he is in my life, and really thank goodness he is in her life.
Then I had to pack because tomorrow is our next family adventure. We are trying out the train as a mode of transportation to Rhode Island instead of fighting the beach traffic on the 95. After work, we will have to go direct to the train station, so there is no time to pack tomorrow. Maybe that was just another layer of stress to add to the bad mood.
My parents will pick us up at the train station at 11pm, and give us access to their car during the weekend. Itís our first wedding anniversary, Youbaís birthday weekend, and Youbaís second anniversary of US citizenship. I am hopeful for a beautiful weekend, with Sabou playing in the yard, on the beach, and us just relaxing and celebrating.
Youba also booked a flight for Sabouís cousin Siaka to come and stay with us for two weeks. Siaka is six, and a wonderful boy, and Sabou needs a big brother and playmate right now. I canít wait.
Yes, there are things to look forward to, I just need this bad mood funk to pass.
7/15/11 Ė Road Trip
So today it was a little difficult to concentrate on work, because there was this train I had to catch to Rhode Island afterwards. We got kicked out of the quiet car, (no idea why, Sabou!) and brought up to Business Class, which was sweet. Sabou played with her Choo Choo and kept repeating the words Choo Choo through most of the trip. Sabou loved the train, probably too much. She walked, danced, sang, and did her Sabou things. Finally she fell asleep and we could both just relax.
One thing I learned is that there is probably no way I could handle the stroller, the bags, and Sabouís antics by myself. I think I still need another adult with me. There is no reason to strain the muscles again. It was hard enough to handle her and the stroller and the luggage with the two of us, and by the end of it all, I did notice joint pain in left shoulder and on the bottom of the right foot, which I havenít felt in a long time.
7/16/11 Ė BEACH
So, I got all decked out in my Coolibar sun protective clothing, wide-brim hat, etc, and packed up Sabou for the beach. I covered myself completely and sat on a chair, and just felt like I was in a frying pan. But, my mom got to play with Sabou in the water and they built sandcastles together. You could see the joy in her eyes. Youba walked her around the beach as well. We only stayed an hour, but I just feel like, even if I hate the beach, and it hates me, she should have the chance to experience it, and she just loves it so much.
Then it was time for Youba and I to prepare for our night out, with my parents as our babysitter. Aw man, it was the first time since Sabou was born that we went out as a couple. We went shopping and there was no one throwing a tantrum or trying to climb out of the cart or pulling things off the shelf and throwing them on the floor. Like it was complete calm serene joy. And then we went out for a fancy dinner, overlooking the Newport Bridge and the beautiful bay full of gorgeous boats. Dinner was awesome (seafood, of course) and we got to be a couple. Happy Anniversary Youba! It was awesome.
Now we wait and see the ramifications of the beach tripÖ
Here’s a link to another definition of what living with lupus is like: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
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