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 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.

10/7/11 Ė not much Lupus going on

I havenít written in a week now. I havenít had much to say. Life goes on between work and baby. The aches and pains are random and still nothing compared to before, so they donít deserve much note. Although there have been these very annoying back pains each morning that seem to subside by lunch for the last two days, and today I had the blurry vision like all morning, which sucked during meetings and when it was time to edit documents. But even that seemed to subside before lunch.

Itís a three-day weekend, and whereas in the past I would have filled the days with fun activities, or went somewhere far away from where I live, this time, I took the opportunity to fill up that third day with doctor appointments so I donít have to take time off of work. Yup, the new me with new priorities, and there you go.

So, itís off to the Eye doctor, to update him on Neurology and to see whatís up, maybe itís time for glasses Ė not Lupus related. And then GYN for my annual, and she doesnít even know that I have Lupus, so sheíll need that update.

Weíll hit Boo at the Zoo this weekend, and Sabou will be all decked out in her monkey costume. Should be adorable.

One thing Iíve been reflecting on, as Occupy Wall Street continues its movement across the country, is that one thing I have always thought about myself was that if I had been alive in the 20s, I would have been a flapper. If I had been born in time for the Civil Rights Movement, I would have been a Freedom Rider. I think you get the idea. (Well, I did participate in the Immigrant Freedom Ride of 2005, so thatís something) And now, here it is, 2011, and this major movement is going on, and Iím like going to work, taking care of baby, and preparing for a trip to the Bronx Zoo. Itís a me I never expected. I mean, I had a meeting down on Wall Street, and afterwards walked by the squatters to take in their energy. There they were with their cardboard signs, their mattresses, sleeping bags, backpacks and coolers. It was like looking at myself 20 years ago. But you know, lunch break ends, and I have to deposit this check into the bank (Bank of America Ė to make it all even more unreal) before heading back to work. The irony was stifling and I kept trying to recognize who I am and who I have become. I was so sure when I was pregnant, that Iíd be bringing her to protests all the time, and here she is two-years old and she hasnít been to any. And I am not up to date on where they are or really whatís going on. My life is work and Nick Jr. (Nickelodeonís pre-school channel), and they donít give such updates, but I can count and I know my ABCs very well. Life sure takes one for a whirl.

10/9/11 Ė What was I thinking?

So, on Saturday, I looked for something to do with Sabou since Youba would be at school all day. I found the Harlem Harvest Festival, and thought thatís not far and it sounds cute. Maybe we can paint a pumpkin or something. I knew it was going to be warmer than usual today, I did not know that it was going to be 80 degrees and feeling like summer. So, I went off without the hat, and in a t-shirt. Our first stop was IHOP, and that was a hit with both of us. Then a phone call to a friend who lives in Harlem to see if sheíd like to hang with us, and then off to find the Festival. Well, it was about one short block long, blocked off to traffic, thank goodness. They had yoga demonstrations, kids dance class demos, tai chi, and the like. It was a small gathering of new establishments cropping up in the new Harlem. And the only shade to be found was off to the side. I felt fine when I was in the shade, but that is not so fun for a little girl who sees freedom all around. I felt like I was deep frying in a fry pan when I was in the sun. Much of my time was spent chasing her around, setting boundaries, keeping her away from sidewalks and cars. It was exhausting. When my friend showed up, we went to her place to hang out for a little while. She is making her dreams come true, and it was so nice to get her updates. We were home by like 3 or 3:30 and both took a two-hour nap. Then it was off to the mall for eats at Applebeeís and to Target because itís going to be as hot or maybe hotter tomorrow at the Bronx Zoo and there is no way Iím making her wear the monkey costume, which is made of fur. And I will be decked out in my Coolibar for the day, for real.

Applebeeís was good. If this girl is around food, sheís usually fine. Then Target and we found the cutest pumpkin t-shirt for her to wear, and that was a full day.

Sunday was Boo at the Zoo with my sisterís family and two of her friendsí families. All in all we were planned to be 9 kids. Now I knew going in there was probably no way for us to keep up with them, but I couldnít miss the opportunity to get Sabou to the zoo and not have to do it alone. So we went. She loved the freedom, pushing the stroller, watching the sea lions, throwing all the pumpkin decorations to the ground. Well, I was right, we could not keep up. They are an extremely organized bunch, and very good at parenting. We did our best and did some activities together and some separately.

Iím still dealing with Sabou straight out attacking me, which drives me crazy. She almost poked one of my eyes out today. Argh.

We got home about 3:30 and again I crashed Ė two-hour nap again. I really needed it. When I woke I began preparations for my parentsí arrival. Yes, the whole house needed to be cleaned. I also could feel this general deterioration in my mood. Like this anger just growing and growing all day. I hate that feeling. Is it because Sabou attacks me? Because I canít keep a clean house? Because I canít keep up with people who have many more kids than I do? I have no idea, but I am tired of the anger that just seems to brew up inside me. Two doctor appointments tomorrow are most welcome, as well as counseling on Tuesday.

10/10/11 Ė Ophthalmalogy and GYN

I woke up this morning feeling like Iíd been run over by a truck, had a nightmare, which is what woke me up, and I just donít feel good. The whole body hurts as well as the head. I did way too much yesterday. Need to take it easy today. At least day care is open, so Iíll get to attend my doctorsí appointments without her.

I continued to feel really bad all day. It was the back, the shoulder, the neck, and the stomach today. I just went slow, once I realized that one doctor appointment was on the far west side and the other on the far east side. Sigh. NYC.

So, I spent my three-day holiday Columbus Day at two doctor appointments. Ophthamology and GYN. I wanted to give them both updates since the Brain MRI, the taper off Prednisone, and the like. First was Eye Doctor. Well, we did lots of tests, as you can imagine, and there’s a change in my Field of Vision, so I have to go back in one month. He said it could be the start of Glaucoma, which runs rampant in my Mom’s family. And I’m a good candidate for reading glasses. I agree since sometimes I have trouble reading, and the blurry vision showed up again last Friday. He was happy to know that the auras, dizziness and world turning to the right have stopped. But he is concerned about this Field of Vision. And I figure, still keep the driving to a minimum until we know what’s really going on.

Between appointments, I went to lunch with a friend who lives near the eye doctor. I shared with her my experience and the new problem with vision. I think my exact quote was, ďIt is not a good day. Iím such a mess.Ē She was so supportive, reminding me of this incredibly life-changing diagnosis I just received, and that itís normal to feel that way. She also reminded that Iím not a mess. My life is good Ė I have a job, a family, a cute little girl, etc. She also shared with me a conference where people who blog about their experiences about living with chronic illnesses all get together to share. Itís an annual event, and Iíll be on the look-out for it next year, since the one this year just happened.

As for GYN, just went in for my annual, which means they did not even know about my new diagnosis of Lupus. And, since I went to the Manhattan office instead of the Bronx office, I had to fill out all the forms as if I were a new patient. Well, just going down the one page sheet of symptoms Iím currently experiencing, I was like, wow. Lupus ran the gamut of almost every category, and when there were symptoms not listed, I just added them in. When I realized what the sheet looked like, I wrote in at the top in capital letters, LUPUS so they would understand the responses. Not that I totally feel like anyone will take the time to really read that page. But they have all the information just the same.

And in talking with the mid-wife about my experience after birth, and how incredibly painful it was to try to breastfeed, she said, that could have been the start of the Lupus symptoms, which I had never thought about, mostly because it was two years ago, and the diagnosis wasnít made until about six months ago. But it made me feel so much better about not being able to breastfeed, not that I felt that bad, because I loved having the freedom that women who breastfeed don’t seem to have, but it just added another layer of understanding. I wonder also if that’s part of why it took my body so long to recover from the birth. I don’t think I could walk well for like three weeks, and I had to return to work full-time at week four. I remember walking very slowly, getting up and down from chairs very slowly, and having to ask for time off to attend my post-partum doctor appointment, which was in week six, and Iíd been working since week four.

So as we know, doctor appointments always lead to more doctor appointments, and now itís off to mammogram and back to eye doctor in one month.

My parents arrived at the exact time I was home from the appointments and from picking up Sabou from day care. Like perfect timing.

For the rest of the day, I still did not get to rest. It was errand after errand, a close fiasco at the Laundromat when they didnít return to me all of my clothing, PISS ME OFF. They finally found them thrown into a basket on top of the washers, you know, where they put clothes that no one takes out of the dryer and then throw out after a month. Yeah, my childís jeans, my new pants for work, and lots of Youbaís clothing. Not cool. I donít think there is another Laundromat in my neighborhood, but I tell you, I refuse to go back to that one ever. They werenít even sorry for the mistake, and showed no remorse when they couldnít find my clothes, and didnít offer me a refund. Luckily my Mom was there and we folded them together and headed off to finish errands and head home. It was just way too much walking today. And my body really felt it all night. Sabou just wanted to play on the floor and it was hard to get down there and get back up. The neck, back, and shoulders were really bad as well as the fatigue. I crashed about 9:30. It was nice to have the folks visit, even for a little while, and not to have to do all the errands alone. It was also wonderful to have my parents to play with Sabou with me all evening. It takes the edge off of dealing with her alone, especially when in a lot of pain. Iíll miss them when they leave, which looks like tomorrow morning.

Back to work tomorrow and hoping for a better day.

Here’s a link to another definition of what living with lupus is like:
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Last edited by patricia obletz. Based on work by Tyler Schuster.  Page last modified on October 11, 2011

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