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.

9/18/11 Ė Another Great Day with Sabou

So today was a surprise birthday party for one of my sisters-in-law. Youba is deep into school work now, so I knew that if I was going, I would be the one driving. Now, I havenít driven a long distance since the dizzy spell on Route 95 in August. A little nervous, yes, but my brother is just 45 minutes from me, and I just felt confident that I can do it. I feel like my brain is just back for the time being and I need to take advantage of it. And I am so glad I did.

There were tons of little girls there, like two-and-a-half, three, five, and Sabou fit right in. She was playing with them all, and the bigger kids too. She was running around in the backyard, pushing the play lawn mowers, driving the little play cars, and climbing up the jungle gym and down the slide.

Even though I was a little tired and the allergies were killing me, I stayed because it was so amazing to watch her in this backyard setting having a blast with all these kids.

Because my eyes were so red and watery and I kept sneezing from the damn allergies, people kept asking if I was OK, was this a bad day, etc. But no, if it were a bad day, they wouldnít have even seen me today. This was an awesome day.

On the way home, we made a few stops to bookstores looking for a book that Youba needs for school. Maybe that helped to make the ride home not seem so long, because of the breaks along the way, but the ride home was just fine as well.

Maybe my brain is just back visiting for a little while, and it is very much more than welcome to stay.

9/19/11 Ė Neurology Update

Itís official, there is nothing wrong with my brain. The MRI came out completely normal. I donít really know what to say about that, except that I still have not had an aura or dizziness or the world turning towards the right since August 11th. There was a slight tremor the other day I just remembered, but it didnít last long at all. I was at work and it was slight and easy to hide.

So, I have no need to follow up with neurology unless symptoms return. Next Monday it is back to the Rheumatologist to share these findings, and see what he wants to do next.

The Neurologist is thinking that if 3mg of Prednisone is working for me, then donít change anything right now. Iím thinking that if Iím down to 3mg already why not just keep tapering off and see what happens. Maybe I donít need the Prednisone at all and can survive with the Plaquenil. I also want to ask if I need to touch base with the Ophthalmologist to see if he needs to be in the loop about all of this, and when to do another look at the eyes. And thatís where we are.

I heard back from my PhD program and they totally understand me letting go of the program. They sent a very nice supportive email back to me. My password on the university email is running out in like 3 days, and Iíve decided just to let it go without changing it; one less email to check.

This will allow me to focus on my job, which just keeps getting busier and busier, and my baby, who just keeps growing and growing, and my husband, who has been right by my side the whole time.

9/19/11 Ė More responses from school

So the word is slowly getting out, and professors are emailing. So far they have all been so supportive and understanding of my decision. Theyíve also reassured me that I can reapply to the program at any time. The emails made me cry. Like, it sunk in. I gave up. Are the tears of relief or sadness or gratefulness? I have no idea. I didnít expect them because for months now Iíve been craving freedom from this ongoing weight on my shoulders so bad. Next come the feelings of ambivalence with such a big decision, and learning to let go and keep moving forward.

9/22/11 Ė Difficult Day

I think I was lacking some spoons today. There were feelings of general weakness in my body, shakes in my hands, intense pain in the left shoulder, and weird head stuff. I was in a training all day, and when there were activities we were supposed to stand for, I just brought a chair with me. I went to lunch with some colleagues, and found it difficult to walk too far and asked that we go to the closest restaurant. I filled out my timesheet wrong, and I donít know if I will get paid. I left my coat at work Ė with my house key in the pocket. While this shouldnít be too much of an issue, I live an hour and three trains away from work. Going back was not an option. I also have a visitor from Nigeria who was locked out with me and my daughter. We had to go to midtown to get Youba out of his class at school, so he could give me his keys, so we could travel back to the Bronx to get into the apartment. I cannot leave for work tomorrow morning until he arrives home from work, so he can be let into the apartment.

I havenít seen this colleague from Nigeria since we met in 2002 at a conference in Lagos. What a wonderful introduction he has had to my life in NYC.

We made the best of it though, and by going to midtown, he was able to see the CNN building and a bit of Central Park. Then we went to dinner at the Hard Rock Cafť at Yankee Stadium Ė I couldnít think of anything else more NYC and more American to show him, but the walk, Oh my God, that walk, I donít really know how I made it. Random pains in my right hip and back, and the ongoing shoulder pain. Fortunately, he pushed the stroller the whole time.

We met through a volunteer program I have been involved with since 1995, training people on Nonviolent Conflict Resolution techniques. He asked me why I had stopped facilitating these intensive three day workshops. I explained to him my life changes, having a child, and now this illness. I am sure that by the end of the evening, he was quite aware of why I no longer facilitate.

Hoping today will be better, and wondering if Iíll need a day off from work. Canít wait to see the Rheumy on Monday.

Also, random thought. I had lunch with my brother on Wednesday and there were parts of the menu that I could not read, and Iím not talking about the Chinese characters. No matter what I did to the menu, I just could not make out certain words. I will definitely go back to the Ophthalmologist soon.

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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Last edited by Tyler Schuster.   Page last modified on September 27, 2011

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