Beyond the Absurd: Life with Lupus

by Mary Kay Diakite, LMSW

Mary Kay Diakite, LMSW continues her work on HIV/AIDS helping agencies service clients, as well as improve programs and set policy as a government worker. Prior to this, she ran a family case management program for African immigrants living with HIV/AIDS in New York City. Mary Kay taught for five years as Adjunct Professor at both Rutgers and Monmouth University Schools of Social Work. For the last eleven years, she’s been working with refugees, immigrants, asylum seekers, survivors of torture and detainees. She has run school-based programs for traumatized refugee and immigrant children in three public school districts. After 9/11, she was recruited to work with traumatized Arab, Muslim and South Asian communities. She conducts psychological evaluations on survivors of torture who are seeking asylum and being detained at the Elizabeth Detention Center. A former Peace Corps Volunteer, she served in Mali, West Africa from 1996 to 1998. She also spent three summers conducting cross border conflict resolution workshops in the Democratic Republic of Congo and in Rwanda. She is fluent in both French and Bambara.

Editor’s Note: Mary Kay Diakite (pronounced Jak-e-tay),and I met when we read our own poetry at the Burchfield-Penney Art Center in Buffalo, New York, in 1992. Last year, Mary Kay also contributed to PeaceOfMind an article on reconciliation with the people of Iraq.

2/2/12 – Home again. Home again.

So, here we are again. I woke up not feeling great and barely able to talk and still this incessant cough. When Youba came home from work, I asked him to take Sabou to day care, and I settled in for yet another day home from work. Unbelievable. I did participate on a conference call, but kept coughing and felt my voice just disappearing as the call went on. Can I say ridiculous?

But at some point I needed to go to the pharmacy. I don’t think I told you about the fiasco at the pharmacy after the doctor appointment yesterday, no probably not. Well, the rheumatologist gave me another round of Augmentin, but told me not to take it unless I’m feeling worse. He said it’s too late for the Tamiflu, but that it would be a good idea for me to have the Tamiflu for my husband, since now he’s been exposed to the flu.

Now, I need to go to Sabou’s pharmacy where they make the toddler dosage of Mefloquine to pick up her pills, because for some reason, I’m not asking, Youba didn’t come home with enough pills. I call her pediatrician, who happens to be from Morocco, and while I’m on the phone, Sabou starts spontaneously repeating the phrase, “Inshallah” over and over again. I had no idea she had picked up Arabic while she was in Mali. It was hysterical, and here I am speaking to a Moroccan while she’s doing it. Such a smart girl.

So, after the doctor appointment I first head to Sabou’s pharmacy and then I went right to my pharmacy afterwards. No problem at Sabou’s pharmacy, of course and of course, at my pharmacy they don’t have one of the prescriptions, and I need to come back.

After a nap, I finally get up the strength and motivation to go, in order to make sure I am able to pick up Sabou in time from day care. I am determined NOT to bring her today after the horrendous trip to the pharmacy the other day. It worked like a charm.

We had a restful evening and I was trying to be positive that I’d be able to go to work the following day, even though my co-workers again recommended that I take the long weekend to rest up and get better.

2/3/12 – Home again. Home again.

Woke up in the same situation as yesterday, and couldn’t pull it together to get to work – again. By mid-afternoon, though, I have to say I started to feel better, and could feel myself coming out of it. I even picked up Sabou early from day care because I was feeling a bit energetic. Am I crazy? She had like this incredible chip on her shoulder and just kept screaming and yelling and crying if she couldn’t get her way, which,you know, there are times, she just can’t. Not all of her ideas are all that great, and some are just you know dangerous.

But we played and I got her a bath. Dogomani is coming tomorrow to braid her hair, and she requested that I wash it on the night before. Well, since by this point, only half of the braids had come out, I feel like half her head got washed well, and the other half, I just don’t know. I also set this goal of getting all of the braids out before tomorrow, just to help out Dogomani. Well, it took a lot longer than I thought. There were so many, and with Sabou’s antics and tantrums and crying spells and all out squirminess, there were much obstacles in my way. What worked magic was letting her play in the sink with water, and then she really didn’t seem to care what I was doing on top of her head. I got them all out and then proceeded to try to comb it. Poor girl. There were clumps and clumps of hair coming out. I felt so bad. And I was scared. Were the braids too tight? Is this normal? Did I do it wrong? What?

Luckily friends are a great resource and were able to tell me that it was normal, that maybe the braids were too tight, and that maybe this time I need to ask Dogomani to make bigger braids. I felt a lot better.

For the cough, I just keep drinking water, chicken soup, trying anything I can to get it out of me, but it really just wants to stay. So annoying.

2/4/12 – Braids and Playdate

This morning Dogomani came to do Sabou’s braids and she brought her two kids with her. Even though they are much older than Sabou, they all seemed to have a great time. I cooked them breakfast and played with them all and it was just fun. Then it was time to do the braids. What should easily have taken only 30 minutes, took more like 2.5 hours, because of her crying, squirming, and complaining. It was exhausting to hold her still and hold her down. When it was finally done, I just wanted a nap. But, there was no way this girl was going to sleep, so we had to think of plan B. Laundry and staying at home were the activities for the day. There was a meeting I was supposed to go to, but it didn’t seem to make much sense, when my priority right now is focused on getting rid of the cough and regaining strength to return to work.

At some point in the evening, when the three of us were home together, I had a huge realization. I was not in any pain. There I was, crawling on the floor with Sabou, having her ride on my back like a horse ride, and dancing when fun music came on, and it hit me. I am not in pain. I am not in pain anywhere. And I soaked in that moment deeper than any moment I can remember lately, so as not to forget it, so as to cherish it forever.

I also on the fly invited a friend to watch the Super Bowl. My first Super Bowl party ever, and yes, one guest counts. :)

2/5/12 – Super Bowl Sunday

I woke up and I swear to you, I could have jumped out of bed and not had any problem. There is still no pain. The annoying cough continues, but the pain is completely gone. Today was the Super Bowl, so I spent the morning with Sabou straightening out our home for our guest. This is one of Sabou’s most favorite things to do. We scrubbed the bathroom, we vacuumed the carpet, we did the dishes, we washed the floor, we made the beds, and we made it look nice. And my second realization of this weekend is that I think I’m becoming a homebody. I mean, I don’t go anywhere, for the most part, and I have very little desire to do so. For someone without a domestic inclination, I find this incredibly amazing and surprising.

It was wonderful to watch the game, even if the Patriots lost to the Giants – AGAIN – but throwing around a little soft football with Sabou, and having her get to know another friend of mine was just awesome. She also got very much in touch with her American and her Buffalo side today, as she had the very traditional pizza and Buffalo chicken wing meal, which she just loved.

2/6/12 – I can walk!

Today was my big debut back to work, and I swear I near danced my way to my cubicle. Why? Because I could. I have now been pain free for three days. Count them, three days. I have no idea why. I still have the persistent cough, which at this point is just annoying, but as for pain, for some reason, there is still none. When my boss’s boss came over to check on me and asked me how I was feeling, I responded, “I can WALK!” It felt so good to say and even better to do. I even volunteered to distribute surveys around Manhattan, which entailed a bit of walking and talking, and I volunteered because I could, because I knew that walking would not be a problem for me. It also felt good to feel useful again. When the voice started going, due to the cough, and that almost every time I talk or laugh, I end up coughing, my co-worker took over presentations for me, which was awesome.

After work, I did something I have not done in a long time. I went to the mall with Sabou, just the two of us. I walked the stroller down the hill to the car, and drove myself and her to Target. It felt so good to have that sense of normalcy again, to do things that are just normal for others to do. I loved every minute of it, and she behaved so well, it was truly a joy. And I do not take any of these three days for granted. I know that life can turn on a dime. And I am determined to truly make the most of these good days, live them to the fullest and say thank you the whole time.

I invested in training pants and big girl panties for her, to inspire her, to let her see what it feels not to have the protection of a diaper, because I’m quickly becoming disenchanted with these pull-ups. Keep moving forward, baby step by baby step, both me and Sabou.

2/7/12 – Lupus Fog and Ticker Tape

This morning I checked my calendar and headed downtown for an all-day training. The training just happened to be near Battery Park, which is where the Giants ticker tape parade was being held. I came out of the subway and into a mass sea of football jerseys, painted faces, and road block barriers, and of course, the ever present NYPD. There was absolutely no way to cross the street to get to the building where my training was. Oh my. Luckily, since I am a government employee, and I was dressed in work clothing, not Giants clothing, the Police let me through the barriers and I was able to get to the training, even if a little late. As I’m settling in, I check my calendar again, to see what else I have to do today, and yes, of course, I’m speaking at a staff meeting at 10:00am in Queens. Oh my. So, I immediately pack up my stuff again, brave the Giants fans, and work my way to the subway. Proud to inform you that thanks to the NY MTA, I was able to get to that meeting on time despite the overcrowding thanks to the Giants fans.

I also received a call from the pediatrician that Sabou had an appointment for today. That also was completely unknown to me. Youba took her the last time, and I distinctly remember him telling me the appointment was on the 23rd. Unfortunately, 23 and 7 are not even close, so don’t ask me, just blame it on the Lupus. It’s OK. I was able to reschedule for the 18th, a Saturday, since there is no way to make evening appointments before they close now that I have an hour commute to work.

Got home and decided to try out the training pants. OMG, what was I thinking? She is not ready. And that’s all I have to say about that.

As for symptoms, I am still pretty much pain free, and still coughing annoyingly.

2/8/12 – Enjoying Parenting

I’m not sure if it’s because Sabou is a little older, and by that I mean, very little older, or if somehow Mali just chilled her out, but she has been an absolute joy to be with lately. When we walk outside to go to daycare or to the store, she walks with me, next to me, and doesn’t run away anymore. She carries things for me, even if they’re big, but she likes to try. She also tries to tell me stories about stuff that happened at day care, which I just absolutely love, and I can’t wait until she has all the words she needs to tell me what she wants to. It can go something like this. “Mama…ah ba da ah haaa ee Victor. Wa ma eee wey yay share. Victor share. Uh huh.” She can go on with such stories for upwards of five minutes. And I just encourage it, let her keep making those sounds to fill in the words she doesn’t have yet. I kept imagining us a bit in the future actually having real conversations with each other. You know? We seem to be having a very good time. Oh, and who knows, maybe the fact that I am no longer in pain has something to do with this as well? Maybe parenting is just easier when you’re not in pain?

We also had the joy of Youba being home with us this evening, which is always a treat. Life is just better when it’s the three of us together. I think Sabou loves seeing us together as well.

I also notice that we watch TV a lot less and play a lot more lately. Maybe that has something to do with her improved behavior? Who knows. I am just enjoying it.

Latest symptom is this horrible sore throat. Hoping it’s nothing, not related to thyroid, and just one of those sore throats I was so prone to as a child. The voice still comes and goes, but seems to be better. We’ll just watch it because it seems lately even simple things can become complicated in a heartbeat. Still enjoying my pain free mobility immensely.

2/9/12 – Supercalifragilisticexbialidocious.

Today I could barely stand it at work, so excited and distracted by Sabou’s Broadway debut, our pilot project to see how she does at a performance. I had so much fun dressing her this morning in her black dress and pink glittery shoes with a bow. And I sent her off to daycare hoping that there would be no major mess-ups, accidents, spills or otherwise.

She was awesome, just awesome. We started off the evening at Roxy’s Delicatessen and had so much fun. She made fun of the pictures on the wall, and played a lot with her food, and overall listened to me. And this is what I think is making parenting more joyful now, she listens and responds. That’s new and really helps me to relax.

Then we met up with my sister and her family in line at the theatre and were on our way. I had no idea how things were going to work with the stroller and all the other items that we travel with – diaper bag, sippy cup, etc…but what a dream. Stroller check for $3, easy as that.

Then the stress occurred. I had very specifically chosen our seats because they were on the end of row in case of meltdowns, proclamations of “Mama-POOP!” and the like. Well, yes, our seats were right next to the end, but also next to this WALL. There was only one way into the row, which was NOT at our end. OMG, I’m freaking out. This won’t do. I didn’t notice the wall on the website. Now what?

I’m telling you, this theatre is prepared for everything. The floor manager took one look at Sabou and said, “You need an easy get-away.” Um-YEAH! So, he set up two chairs for us next to, get this, the row where my sister and her family were sitting. Can you believe? And no one ever came to sit in the row between us. It was like a Broadway dream come true.

Sabou was so good, watching the show, dancing, playing with her program, hugging Mommy. We got up when she had to, wandered down to the restroom sometimes just for fun to get her out of the dark theatre. At one point she looked at me and said, “Mama, where TV?” and I knew that she was ready to head back to the theatre. It was so fun to watch her watch the show.

She almost made it all the way through too. I think we only missed like 10 minutes at the end, when she ran away from me too fast and I couldn’t catch her and a theatre worker did and she SQUEALED! I quickly packed us up and got her out of there.

She didn’t fall asleep on the subway as I was hoping, and it was a crowded one, a little much for her to take. But, we did it. Thank goodness for express trains. But, by the time we got to that last stairwell leading out the subway to my apartment, I could feel it in my legs. They were completely weak, and I knew it was time to just crash. But hey, we did it! We really did it! I am inspired now to do even more with her, find more family friendly and kid friendly performances and just GO! Make the most of NYC since I’m living here. It was ‘practically perfect.”

2/10/12 – Still Pain Free and Making the Most of It

After work, we were off again, this time to dinner in Manhattan with a friend who has returned to NYC! Yay for more friends. :) Sabou remembered from the Super Bowl Party and kept saying “Pizza. Pizza. Pizza.” I love how she puts things together. Yes, I am still pain free. I even ran across a street to make it across before the light turned. My friend saw me and remarked about it. I said, “Yes, I did, because I CAN!” and I proceeded to show off my pain free mobility. All I can say is that these days are such a gift and I am making the most of them, for real.

Near the end of dinner this intense fatigue hit, so I knew that it was time to go home. Nice for it to be due to fatigue and not to intense pain. Thank you Lupus for this break.

2/11/12 – Hair Cut

So, as I continue to work through my Feng Shui book, it becomes apparent to me, as it did at work, when a co-worker commented on my ‘going natural’ that it’s time to take care of me, to get out of the house, leave the girl with Youba and do stuff for me. So, when he got home from school, I headed out to get my hair dyed and cut, and it was just awesome. It felt so good to do something normal, like I used to, without the stroller in tow, just to take care of me. The look is new, the color is new, and I just love it. I need to remember to do this more often, for real.

2/12/12 – the MET, what?

So, a friend with a baby, Laya, almost Sabou’s age invites us to go to the Metropolitan Museum of Art. I’m like, what? A little skeptical given the two toddlers we’ll have with us, but I’m up for any adventure at this point, especially with the pain free lifestyle I am enjoying. Well, let me tell you, it was completely awesome! Both girls were fast asleep when we got there, and so we headed right to the Islamic Art exhibit that we were both hoping to see. It was great to get to talk, chat, without the interruptions and to see all the fabulous old artwork on display. I forgot how much I love that museum. We wandered all through, and found ourselves in the Africa exhibit. My friend had never seen it before. Her baby is half-Malian too, so we went right over to the Mali exhibit and had so much fun showing the babies their Dogon and Bamanan culture through the doors, masks and Chiwaras. Both babies woke up when we got to Africa, and since there were not many people, they got to wander and play and stuff without bothering anyone. So cute. The first thing that Sabou said when she woke up was, “Where’s Laya?” That was just adorable.

Then it was off to the potty, which happens to be in this amazingly large room full of benches. No art displayed, it looks more like a meeting point for bus tours, but the absolute perfect room for two little girls. They had a blast running around, climbing on the benches, like all of it. We never even made it to the MetKids display because this room was such a hit! I think it’s worth the donation to the museum just to let the girls roam in this room. Sssshhh, don’t tell the curators. :) I am definitely bringing her back for more. There’s so much more to explore in that museum, always.

Then it was off to Harlem for IHOP. A lovely dinner, with many interruptions and antics from mostly Sabou. Laya was pretty calm. But another awesome day that I am sooo grateful for. Thank you Lupus for yet another painless day.

The only symptom to bring up I guess, is that when I lie on my left side, it’s like I can feel my heart contract, there’s a slight pain for a second and then it’s done. It’s not consistent, happens very infrequently, and only when I lie on my left side. Nothing on the right side. So, I remind myself to sleep on the right side. If I forget, my body reminds me. No idea, and probably it’s nothing, but as with everything with Lupus, I am taking note and watching it. There is also this sore throat that shows up only at night. Whatever, hey, I can walk. I can move, and there is nothing better.


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.

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 February 21, 2012

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