Beyond the Absurd: Life with Lupus

by Mary Kay Diakite, LMSW

12/16/11 Ė This is your calling.

Today was the day that Iíve been dreading for a long time. It was my last and final all day training that I had scheduled at my former university, over an hour away by train. Because I had such a hard time keeping my energy up for the last workshop, and that one was only an hour, I really had no idea how this one was going to go, but I was not hopeful.

Four trains later, yes, somehow I got on the wrong train, even though I taught at that university for five years, and had to switch trains half-way through the trip. I was about 20 minutes late, and instead of the small class of nine people that I expected, I walked into a full house.

All I can say is that some things we are just born to do. It was absolutely no problem to get back into the flow of the topic, the discussions, the questions and concerns. I fell right back into place. And when I needed to, I just sat down on the desk, like so many professors do anyway. They had no idea.

Somewhere near the end of the all day training one of the participants stated that she noticed I kept referring to jobs I used to have, and clients I used to work with. She proceeded to ask me what I do now. I explained that now I work in city government in the field of HIV. She looked at me and said, ďThis is your calling. This is what you were born to do.Ē That level of encouragement was so good to hear; whether or not I believe her at this point in my life, thatís another story.

I have to say that it became very clear to me that they need a trainer who is still working in the field as I once was and who is completely up to date on the world of immigration policy and reform, as I am not. My world has become childrenís TV and HIV. They deserve more. But the compliments, you just have to take them in when they come and remember who you once were.

When I got home, I found that the genetic tests from the Lupus registry had arrived. Well, I think my expectations were too high. I thought they were going to do a comprehensive look at my genetics and Iíd find out about all my chromosomes and the like. But no, sadly they just did the same tests that my Rheumy does regularly. The results look pretty good though I must say. They couldnít have arrived in better timing, since my next appointment with the Rheumy is on Monday.

12/17/11 Ė Sleepover and Crazy NYC Christmas

Today was the first day of the weekend that I have been waiting for impatiently for weeks now. A sleepover with my sister, her daughter, our mom and Sabou! It was awesome. We were determined to do the traditional NYC Christmas things. Our trip started at Macyís and traveled north up 5th Avenue through Bryant Park and ending in Rockefeller Center.

Everyone and her mother had the same idea. What were we thinking to try to do this the week before Christmas? The crowds were unbelievable and the stroller became a catastrophe. Between tantrums by Sabou and periodic bouts of trying to run away from us into the crazy crowds and the periodic pains from having to carry her for far too long, we had a very successful day. We were all so proud in the subway saying, ďWe did it!Ē

Having the sleepover was a great experience. Just watching Sabou and her cousin interact and play and fully enjoy each other was awesome. It seemed too short and I didnít want them to ever leave. Having time to hang out and chat with my mom and sister while the girls slept was also priceless. Hopefully we can do some more!

12/18/11 Ė Feeling a little weak

No surprise here, I guess, if we think about yesterday, but really, today I did not feel so strong. I walked with my mom to church since she doesnít know my neighborhood so well, and sat with her through the service. I fell asleep at some point, the homily I think, and my body was just feeling weak. It was hard to kneel, hard to stand, etc. When we left for the walk home, that new becoming familiar back pain showed up and I did a little limping. My mom noticed, and I told her that it was nothing, I just need to walk through it, which is pretty much what Iíve been doing anyway.

When we got home, my sister was ready to take the girls to a playground. I very simply explained that I canít. There was no way for me to handle Sabou antics in the playground, and somehow entice her to leave the playground when Iíve had enough. It didnít seem worth it to chance it. She understood and took her own girl down to play. Sabou stayed with me to play in the living room. What she doesnít know, will not hurt her.

They packed up and left and I passed out on the couch. That gave Sabou full range of the apartment, which she made sure to get use out of. When I woke, about an hour later, I found every book she owns strewn across the rug, as well as all of her puzzle pieces.

Then I heard this strange sound coming from the kitchen. I found her on the floor with the remains of a 20 pound bag of rice surrounding her. She was carefully trying to use a cup to move the rice from the rice bag into the pot she knows that Daddy uses in the rice cooker. This girl is very attached to her rice. And I need to say that actually some rice did end up in the pot. Unfortunately, the majority of the rice was on the kitchen floor. Things can happen so fast. I immediately called Youba and told him that he may want to consider buying some rice. We stayed home the rest of the day and it just felt good to chill out and relax.

12/19/11 Ė Prednisone Taper Take Two

After work, I had my Rheumy appointment. First we went over the genetic test results. The amusing thing to me was that he said exactly the same thing when he looked at the results, as the members of my on-line support group had said, which was, ďSo, how do you feel?Ē The implication here is that with Lupus, your blood work does not always coincide with how well you are feeling, nor how much pain you are in. I am proud to say that I am feeling good, so good in fact that I walked from Columbus Circle (59th St and Central Park West) to the Rheumatologist up on Fifth Avenue in the 70s. Now it was not my plan to do so, but when I got in the subway, I couldnít figure out a faster way across town than to walk. But you know what, I did it, and I could do it, and I still feel fine.

After examining both my blood work and me, he decided to try the taper off Prednisone again. So, Iíll go back down to 4mg for two weeks, and then try 3mg for another two weeks. I go back to see him in 4 weeks.

12/20/11 Ė Donít bring a toddler to support group

Today I had the opportunity to give a presentation about immigration issues to HIV providers in NYC. Itís the first time that my former work and my current work in HIV have come together at this job. That was cool.

Then it was a good-bye lunch with a colleague who is leaving; that took a little longer than expected, and I didnít know that my staff had been planning a surprise birthday celebration for me, which I was late for. So late, in fact, that most people had to leave to go to a meeting, and we ended up being a small group.

But, you know what, it was so cool. There were beautiful flowers on my desk and a card signed by a bunch of people in the office and ice cream cake. I had a happy birthday.

And then I went home to pack up Sabou so the two of us could attend the holiday party happening at the Lupus Foundation support group. Iíd seen other parents bring children, so I figured why not. Why not? Well, because my girl just canít take it.

When we got there, she was immediately so disappointed. She did not want to be in that place with the big table and all those adults. So, she did what any two-year old would do, she acted out and took out all her frustrations on mommy. She was hitting me in the face, wrecking the toys of another child who was there, and causing havoc. We were sitting at the group table, her on my lap, when she started repeatedly hitting me in the face. I just lost it. I picked her up like a football and got her out of that room right away. We went into an empty office where I just cried. Not the best response, but the only one I had. I couldnít get her into the stroller, and struggled to get a coat on her, and left that meeting as soon as I could. Just defeated and counting down the days until her flight to Mali.

I was speaking to a friend that night and telling her about Sabouís antics, and how when she hits me I lose all my self-esteem and all I can do is cry. She says I really need to speak to my therapist about this. Most people just laugh when I tell them Sabouís antics, like itís completely normal and expected. But for me, I just feel violated and victimized. No one has ever hit me in the face before. I need a better response.

12/21/11 Ė Mefloquine Ė take two

So, itís Wednesday again, and I need to give her the anti-malarial medication again. This always stresses me out, because I need to make sure that she takes all of it. Since the juice worked like a charm last week, I figured letís just do it again. I stopped off at a local bodega and got her a juice and a straw. While it was stressing me out, I was careful not to show her, and just kept offering her the juice with the straw until she finished it. Success again.

And Iím learning to let go, because I wonít be there in Mali, and she will be fully Youbaís responsibility. And I need to trust that he will give her the medicine every week on Wednesdays while he is there.

12/22/11 Ė Coughing and becoming Group Leader and possible Lupus Speaker

So, Sabou has had a cough for a while now, and now Youba has it, and Iím also starting to get one. Iím not that concerned, since itís going through the house so I know that itís not Lupus. But, Iím watching it closely. I keep reminding myself that even with a cough, Sabou is getting on that plane. This trip is way too important for all of us.

None of us has fever or is showing signs of being sick, itís just this annoying cough.

Today I received final confirmation of being named a group leader for the online Lupus Support group that I belong to. Itís like my whole life coming together. Social work experience, experience with support groups, and medical social work through HIV work and now Lupus. I only hope that I can provide supportive understanding and encouragement to the very difficult situations that people face.

I also received an email today from the Lupus Foundation about an upcoming seminar for people living with Lupus that looks at the importance of the doctor/patient relationship. On the flyer they also stated that they were looking for people with Lupus who would be willing to speak.

I was like, wow, wouldnít that be something; wouldnít that be again like my whole life coming together. So, I responded to them right away stating that not only would I like to participate, Iíd be willing to speak if they still needed people. Fingers crossed.

12/23/11 Ė Final Preparations for Christmas and Mali and a Speaking Engagement

It was a slow day at work and they let us go early. A co-worker reminded me that I need to prepare a notarized letter granting permission to Youba to travel outside the country with Sabou. I completely forgot. So today I called the State Department to find out exactly what words they needed to see in the letter. It basically went something like this. I give permission, and I understand that they are traveling outside the US. Or something like that. I also made it clear, verbally, to Youba that I really prefer that they donít travel to Burkina Faso this go round. I would prefer that they all just stay in Mali. So, I worded and printed the letter and began seeking out a notary. I totally cannot forget to do this. None were available at work, and this got moved to a weekend assignment.

When I got home, I received an email from the organizers of the Lupus seminar, saying that they would be interested in having me speak. I am just so thrilled. You never know where life will take you.

12/24/11 Ė Christmas Eve

Bright and early, I headed out to Arthur Avenue (Bronx version of Little Italy) to get lovely Italian bread for the big family Christmas party planned for tomorrow. It was fun to be in that neighborhood on this day, with tons of other people also needing to pick up amazing breads and other fun Italian items for Christmas. Totally festive and totally different from where I live, yet still the Bronx. I was the first one on line at a bakery that had not yet opened up. People got on line behind me, and I felt so successful. Turned out to be just fine and easy and I headed home.

Youbaís semester is finally done, and now he can finally concentrate on preparing for the trip. He wants to go to a mall in the suburbs and go shopping. I kind of tell him thatís not a good idea because the crowds are going to be just amazing, and a friend will be coming sometime in the afternoon. So, he heads to the mid-town craziness of NYC, and I head to local shops and banks to find a notary and get food for a nice Christmas Eve dinner.

The local bank does notary for free, so that turned out to be extremely easy. Thank goodness. And I got inspired and bought salmon. My friend has given me a very easy recipe and Iíve never cooked a fish before, or much of anything, but something just made me feel that this I could do.

So, the afternoon was spent at home, trying to prepare the apartment for our guest and me cooking up a storm. Salmon, potatoes, and Arthur Avenue bread, and I forget what else. Oh yeah, the pumpkin risotto for the Christmas party, and of course my famous brownies. Youba came home with tons of stuff and was packing and packing.

My friend arrived and prepared food for us as well, and we sat down to eat in the evening and laughed and enjoyed The Sound of Music, one of my favorites of all time.

After Sabou went to sleep, my friend helped me get all the gifts from the car, my north pole, and I began wrapping gifts and placing them under the little tree.

The cough is continuing, while Youbaís and Sabouís seem to be decreasing. And Iím still watching it.

12/25/11 Ė Merry Christmas

Sabou woke up and had a lot of fun opening her gifts, especially the stroller for Curious George.

At the family party, she was really shy and clinging to me and not wanting to leave my lap. It was like last year in Mali all over again. I am hoping that she is just getting in as much mommy time as possible before her big trip. I am hoping that she is not this clingy with daddy upon arrival in Mali, because that would just be difficult for Youba.

Once she settled in, then the old Sabou was back, playing with her cousins, running around, and doing her usual antics. She was adorable. She even sat at the head of the kidsí table.

My mom kept crying because of the big trip to Mali, and kept hugging her and saying goodbye. Iíll never know what Sabou thought of that.
We didnít stay late because Youba had to go to work, but what a lovely Christmas and send-off for Sabou.

12/26/11 Ė Still coughing

Itís a day off from work, and Iím so excited to meet Youbaís co-worker who is traveling to Mali to meet Youba and do some tourism.

He arrived with his girlfriend, and I was completely at ease with them right away. She lives with a three-year old, and loves kids, which means that he is around toddlers pretty often. He only had good things to say about Youbaís work and potential for growth within the company. I am getting excited to see what happens when Youba graduates. What kind of opportunities will open up for him, and thus for us.

All in all I am still getting very excited about this trip for Youba and Sabou.

Somewhere in the midst of this holiday, Youba informs me that I donít need therapy on a weekly basis, that Lupus is not a dangerous disease, that Iím making it out to be more than it is, and that he has a Tuesday night class scheduled. Thereís nothing he can do.

Now I know that I havenít had much to say at therapy lately, just good stuff, and originally I had thought that therapy would have had to end last fall, so I really canít complain, although I do like having that day, knowing that he will pick her up and I have time to myself. The only day he doesnít have class, that Iíd be able to go, is on Friday night. I canít even imagine a therapist working on a Friday night. Sigh. Iím not in crisis. My body is OK, just this cough remains, which seems to be getting worse.

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 January 13, 2012

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