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.

The on-line support groups at www.mdjunction.com have been so helpful to me. They provide on-line support groups that cover 700 different health challenges and allows for support and anonymity. Maybe it could be of help to PeaceOfMind readers as well.

12/10/11 Ė Finding Volunteer Work that I can do.

So today, Sabou and I had a laid back morning, just chilling in the house and then I decided to take her on some errands, mostly to pick up her anti-Malaria medication, which just happens to be on the East Side of Manhattan. We wandered in and out of stores. I kept her occupied with snacks like bananas and Cheez-Its, and we got a lot accomplished actually. She was easy going, and we walked from 86th Street down to 59th Street and then back. Thatís like 27 blocks each way. It felt good to walk, although by the end, the back was definitely acting up.

On the way home, we bump into someone from the Alternatives to Violence Project Bronx Area Council on the train. What a wonderful coincidence, because I had completely forgotten that the next meeting was today, and because I had kind of already decided not to go anyway because of feeling so useless to them at the last meeting. But, seeing him kind of inspired me, so Sabou and I went home, had lunch and I baked cookies to bring to the meeting.

Itís a bus ride to the meeting, so we needed to ditch the stroller, and I had to pack a backpack for the trip. Now Sabou was able to find a seat, but I wasnít. I was trying to hold on to the bar up above but that was painful on the arms, and it was pulling the back in a bad way. It was also difficult to keep balance. I think standing on buses is more difficult than standing on subways. We were finally able to find two seats next to each other, and that helped.

Well, I am so glad I went to the meeting. They need someone to contact facilitators and potential workshop participants by email. Email, you know the thing that you can do from the comfort of your home, any time of day or night, even in your PJs. Email, you know, something that I can do. So, yes, I have found a way to support this initiative and feel a little useful and part of a community again, and my new title is Registrar, or as they put it, Technical Coordinator, which I think is hysterical given my very limited skills in that area, but email, yes email I can do.

Then it was back to the bus and heading home. Again, the back was a bit uncomfortable, but sitting with the backpack on, I am sure did not help. When we got home, Sabou proclaimed that she wanted a shower. It seemed like a reasonable request, until it no longer did. She wasnít really interested in a shower, just in putting plastic alphabet letters into the tub. Well, it was quite a bit of a conflict getting her to actually calm down enough to get washed, including her hair. But we did it.

Then, because she is my daughter, she kept saying, ďMama, Bye Bye.Ē ďMama, Car.Ē She canít sit still, and would rather be out than sitting in a living room. Just like Mommy. So we got dressed again, I was getting hungry anyway, we headed out to find something to eat. Those big yellow arches do it every time, and itís such a short walk, I figured, why not, get the girl a happy meal. She did pretty good at the restaurant, but the walk home was a bit much for her. She kept refusing to listen, and would wander off on her own. I had to pick her up like a football in one hand and push the empty stroller with the other hand up the hill.

Well, this is it, this is about all my body can take in a day, and when I got home, thank goodness Youba was there. So I could just crash on the couch, which I promptly did. I woke up in not such a good mood, and put the girl to bed, with me beside her. That helped a lot. I am feeling a lot better now.

We also heard from a friend, who would like to hang out tomorrow, so there will be a play date for Sabou and mommy tomorrow, chez nous, and I really no longer care about the appearance of the apartment, I am just looking forward to more company. :)

12/11/11 Ė Play Date!

So, today, since we were having company, someway, somehow, the apartment had to look at least somewhat presentable. Slowly, slowly, I worked through all the rooms in the apartment, with help from Sabou, who just loves to vacuum.

We had a fabulous time hanging out with Sabouís friend and her mom. Itís so nice to connect with another American who has married a Malian and to have someone who understands the transnational aspect of family, and of owning and building houses in faraway places, and figuring out where is the best place to live, and what does that mean, etc.

The girls also had a fabulous time, now that Sabouís friend is 18 months and is more mobile and walking everywhere. They had their struggles with sharing and stuff, but overall I really enjoyed watching Sabou interact with someone younger than she. That doesnít happen too often.

12/12/11 Ė Getting into the Volunteer Thing and Preparing for Mali

So today, I began my volunteer work for AVP, and I canít tell you how much it means to me to be back doing something, to be part of a community, and to have something to offer. My job is recruiting facilitators and participants for a workshop in the Bronx in January, all from the comfort of my own home and computer.

So today began the mass emailings, and I am proud to say that within one day, four facilitators had already responded that they are interested in facilitating. Yes, sometimes you just need to ask. Now Iíve decided to donate facilitator supplies to the group. It feels so good, just to have something to offer to a cause so close to my heart, and at a time when I feel useless and overwhelmed a lot of the time.

So, a co-worker brought it to my attention that I should probably be preparing Sabou for the trip, letting her know it is coming, etc. That never occurred me, even though I know sheís smart and understands so much, I just never thought to have these conversations with her.

I took the advice to heart, and when she brought me over a picture book of transportation, I pointed to the plane, said that she and Daddy would be flying in a plane to Mali. All the time, asking her to repeat the words: ďflyĒ ďplaneĒ ďDaddyĒ ďMaliĒ. Then reminding her of peopleís names sheíll see when she gets there, and the types of things sheíll be doing: chasing animals, going to market, riding on motorcycles, playing and dancing with her cousins, learning how to cook the traditional way. I think itís a great idea, and Iíll keep doing it.

12/13/11 Ė ďMama, Medicine!Ē and More Volunteering Opening Up

So this morning, Sabou was happily playing with her toys when I was taking my second set of morning meds. She did not directly observe me taking them. But she did notice when I sat down to eat. And I usually get up after my first bite, and say, ďMedicineĒ when I remember that I need to take my medicine with food. Well, there I was enjoying my cereal, and Sabou didnít know if Iíd taken the meds or not, so she ran to the kitchen, started jumping up and down, pointing at the cabinet where I keep my medicines, screaming, ďMama, Medicine!Ē This went on for a while until I was able to persuade her that yes, I had taken them. But in that moment, man did I feel loved.

When it rains, it pours. Amazingly enough, one of my dreams has come true. Iíve been asked by one of the group leaders of one of my on-line Lupus support groups, to be a group leader. This is what Iíve been seeking. A way to be involved in Lupus work, and here itís just being handed to me. She said very nice things, such as how much good information I share in my posts, and how much support I offer to others. I felt so happy. Now, I need to be approved by all the other group members, and by the website administrator. I told her that no matter what the others decide, that she has completely made my day.

As for Sabou in the evening, she was awesome. No tears, no drama. I wonder if itís because she knows sheís leaving? Anyway, we had a great day!

12/14/11 Ė Inspiration and Getting Mefloquine into a two-year-old and Inspiration

At work today, I attended day one of a two-day train the trainer training. Have I used the word training enough in that first sentence? Anyway, the trainer had some health issues going on, walked with a cane, and did the entire training sitting down. And you know what, he was completely engaging and effective, and he completely inspired me. Since this diagnosis, I have been like, well there goes training, one thing that I absolutely love to do. Now my body just canít take it. And here this man is put in my path to change my thinking and to remind me that anything is possible. You just need to make your circumstances work for you, and find a way to work well within your bodyís limitations. And he did a fabulous job. And Iíve got this all day training, my last one, in NJ, on Friday, and Iím interested to see how I do, and if how I do will change whether this is truly my last one in NJ or not.

When I got home, I received a message that the Lupus Support Group Leaders all agreed that I would make a great group leader. So, I am one step closer to achieving one of my goals. Now, we wait to hear back from the website administrator. I can feel my self-esteem increasing every day now.

My biggest goal today on the home front was figuring out how to get the malaria medicine into Sabou, so she can start her anti-Malarial regimen two weeks before they leave. It used to be that I was sure sheíd gobble down her yogurt, or eat all her fruit. Itís not like that anymore. So, I got her something she loves, that I donít give her too often: Juice. She gulped it down without question, and she is one step closer. My biggest fear is that she wonít finish and wonít get all the medicine. I mean they only give one pill per week, and there is no margin of error. So, if she misses a dose by refusing to eat or drink whatever itís in, then weĎre just lost and need to hope that the mosquito nets are protection enough.

12/15/11 Ė Self Acceptance and Sabou Antics

I am happy (I guess) to report that Iím starting to get accustomed to all my crazy symptoms and weird and unpredictable things that happen, and that they are slowly being integrated into everyday life.

For instance, for the past few days, Iíve had to walk slowly and sometimes limp, due to random pains in the lower back and legs, and sometimes feet and shoulders. But itís just a normal course of the day now. It doesnít get to me, or make me feel less, or scare me like at the beginning of this disease. Itís just something Iím learning how to manage, like the optical auras. When they come, itís like I know what to expect now, and can manage through them.

A co-worker (Iím thinking) noticed me walking funny, limping, going slowly whatever, asked if Iím OK and you know what, I told him yes. Iím OK, because I really am. I just need to keep moving and doing what I can do, because for the moment, I can do it, even if it doesnít look completely comfortable, it is not debilitating yet.

I am still not looking forward to this training in NJ tomorrow; the long train ride and then being ON for the group all day. Weíll just take it as it comes.

In terms of the volunteer work, I heard from someone in the group who expressed his deep appreciation for my dedication and follow through. He said that he completely trusts that when I say Iím going to do something, he now knows that I mean it. That meant so much to me. Itís nice to feel appreciated and in a community of people again.

As for Sabou, yes, she had a good run. We had two evenings of absolutely no crying and no drama. I canít ever remember that happening in a long time now. Well, her track record has ended. Today she was back to her old antics as our resident trouble maker with an extremely loud screech. I had to stop myself from saying things like, ďKeep this up and Iím sending you to Africa. Theyíll teach you how to act.Ē Yeah, what? That would be like the worst thing to say, especially since I am sending her there in two weeks, for fun and vacation. I never want it to seem like a punishment. I have heard so many of my immigrant and refugee clients say that over the years. I canít be the one to repeat it. But in those moments of complete frustration, itís amazing what pops into oneís mind.

And my physical state does deeply impact how our evenings go. When I got home from work, I really was just not feeling right, kind of weak and shaky, yet still determined to get things done. like shopping for food so my guests have something to eat this weekend. What was I thinking? I couldnít handle her in the stroller in the food store. She was throwing things off of shelves and walking the stroller away from me, and causing her general mischief. The shopping spree ended early, because I could not continue, and I was so weak at that point that I just needed to eat. We stopped at a little place right next to the store and sat down to grab something quick. She was all over the place, pushing buttons on the ATM machine, even if someone was using it, trying to leave the restaurant, and the worst was refusing to put her jacket on, and screeching as loud as she could when I tried. Unbelievable. I gave up on the jacket, it was a pretty warm night anyway and dragged her home in the stroller, kicking and screaming. This girl does not like her freedom taken away from her by safety belts on strollers. A most lovely evening, not. At home she wasnít much better, and it was timeout after screaming time out. She finally went to sleep about 9pm.

All that said, I am still really looking forward to is this weekend. My sister, her daughter, and our mother are coming for a girlsí weekend in NYC, complete with all the holiday pickins we can muster. The tree, the holiday windows, maybe Bryant Park, and Central Park Zoo, and who knows, the Holiday Train Show at the Bronx Botanical Gardens? Weíll see what we can all handle and what needs to done at another time. I just canít wait for Sabou to have time with her Auntie and cousin and Nana. And I canít wait for me to either. Weíre considering it my birthday weekend. I just need to find time to clean the house, make it presentable again. Itís always an ongoing struggle and one that I donít usually win.

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/
Back to top
Back to Beyond the Absurd: Life with Lupus

Last edited by Tyler Schuster.   Page last modified on December 26, 2011

Legal Information |  Designed and built by Emergency Digital. | Hosted by Steadfast Networks