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.

12/3/11 – Kid-event at Barnes and Noble and Time with Sam

Saturday morning, first thing, Sabou and I head up to the suburbs to hear my brother sing children’s music at a Barnes and Noble in the mall as part of a fundraiser for Sam’s nursery school. Well, you can’t make a girl any happier than a chance to ride in a car and to go and see Sam. She was very excited.

Everything was going fine in the car. I was driving fine. I don’t remember any pain and the vision was cooperating. I was feeling good about myself, and about the awesome day that Sabou was about to have.

Well, life happens, you know, and as we began the necessary snaking in and around the mall parking lot, it was just too much for Sabou and she puked up her entire breakfast all over herself, the car seat, and the car. So close, and yet so far.

So, here we are in a crowded mall parking lot, and she is completely covered in her own breakfast, and I don’t have a plan B. I mean I always pack an extra set of clothing, but for some reason this morning I only packed an extra t-shirt and pants, and not a warm shirt to put over the t-shirt, figuring that the fleece she was wearing would do.

Hey, at least we’re at a mall AND there’s a Target right next to Barnes and Noble. So, I begin the slow process of getting her out of those filthy clothes and cleaning up with the only thing that I have in the car, her baby wipes. Not the quickest process. But, we’re doing it, and I’m figuring out how to keep her warm by wrapping my winter coat around her in the stroller until we get to Target and can buy her some warm clothes and a new winter coat. Yes, things that she doesn’t necessarily need, but given the situation, the only option.

As I’m just starting the awful process of cleaning her up, this car drives up and takes the spot directly next to me. Are you kidding me? I can’t believe it. Of the whole parking lot, this person feels the need to park exactly right here, right when I’m trying to deal with this whole dilemma? And I can feel my attitude coming on.

Well, guess what, it was my brother. He had no idea he had pulled up right next to me, and I was completely relieved when I saw that it was him. I explained all that had happened, and that I need to go to Target before heading over to see him play. You can’t make this stuff up.

So, she got everything she needed from Target and we headed to Barnes and Noble. At first she was shy and wouldn’t get out of my lap, but slowly she began to explore and found the shelf of all Curious George dolls. She picked them all up and one by one and handed them to Sam’s mom. It was seriously the cutest thing ever. She got to wander, look at books, sit down and ‘read’ them, and color. Just perfect.

When the event was over, we went with Sam and his family to the merry-go-round in the mall, Sabou and I had lunch at the food court, and then it was off to see Santa.

Santa was absolutely terrifying to her, and she wouldn’t sit in his lap. No photo this year. Then it was off to play with her cousins back at their house, which is absolutely her favorite thing to do.

And since they live in the suburbs, they actually have a washing machine and dryer on site, in the house! A novel idea, I know. So, Sam’s mom helped me deal with the clothing and everything is sparkling clean. I’m so thankful to her and to home-based washers and dryers.

Then we went to visit another brother’s new home, which is just gorgeous. He gave us the tour, complete with basement apartment for Sabou and me to have our get-out-of-the-city time. He also offered it to me while Youba and Sabou are away in case I get lonely and don’t want to be in the Bronx. So appreciative.

And not much Lupus to speak about, today I needed to focus on Sabou.

12/4/11 – A NYC Kind of Christmas

Today was the day that we were scheduled to check out all that NYC has to offer during the holiday season. It was a chance to catch up with a friend I haven’t seen in years, a chance for Sabou to get to know her so that possible babysitting can be in the future, and to get a sense of how it will be to take Sabou and my parents to these sites over the new year.

The weather was perfect, or should I say “so delightful.” When we came up out of the subway, the first thing I noticed was a Harley Davidson parade. One of Sabou’s and my favorite things. Sabou gets to ride motorcycles when we’re in Mali, and it’s my favorite mode of transport when we’re there.

So, we met my friend at St. Patrick’s Cathedral, which was just too crowded to take Sabou inside, and we went to check out Rockefeller Center complete with the angels, the trees, the holiday lights and the bikers.

Yes, the bikers were everywhere. We wandered in and out of the bikes, and their owners offered to let Sabou sit on the bikes. Since this was something that she LOVED to do in Mali, I figured she’d have no problem, but there was no way. She wasn’t going to let go of me. I explained to them how she gets to ride in Mali, but is not allowed here in the US. They loved that.

Then it was the holiday windows down Fifth Avenue and the great surprise of the day, Bryant Park. Yes, it turns out that Bryant Park also has a gorgeous tree, and ice skating rink and a merry-go-round. You get all this without the crazy crowds of Rockafeller. It was awesome and we found a comfortable place to sit and watch the ice skaters. Sabou was loving being outside, and I was having a great time catching up with a friend and watching her and Sabou get to know each other.

The merry-go-round was also a big hit, as was the children’s chairs set up in little reading areas with books to read. Can you imagine such a thing in my neighborhood? She loved moving the chairs around, of course.

Then it was off for a fabulous Indian lunch, and the parting of ways. Sabou and I hit Macy’s windows before heading home. An awesome weekend. An awesome day. And I have another babysitting resource to call upon when I’m in need.

That evening Youba and I made a point of speaking Bambara to Sabou and showing her photos from the last trip, and saying people’s names for her. It was fun to watch her try to pronounce the Bambara words, and already some are coming back. Tata (one of her grandmothers), Faty (her cousin, and I would say partner in crime) and OWO (yes). She is on her way.

12/5/11 – Are You Kidding Me???

So, this morning I wake up, to a very normal morning, and get the girl to day care and to the train to go to work. Well, when I’m trying to enter the train, I notice that there is a young man, wearing headphones, standing right in the middle of the door, making it very difficult for all of us at my stop to actually enter the train. The whole group of us work our way around him and find a way into the car. An older gentleman expresses to this young man his frustration, “You know, we are all trying to get on the train, so please move away from the door.” Well, this little comment just set the young man OFF. Like, he became so upset, so fast, and so disrespectfully.

The older gentlemen, I think was shocked at the level of disrespect that this young man was willing to show his elder, and he expressed his feelings about that as well. He was seriously trying to educate this young. Well, the more the man spoke, the more visibly pissed off the young man became and the more attitude came out of his mouth.

When we got to the next stop, Yankee Stadium, he got off the train. I felt a wave of relief that he was gone. Unfortunately, he wasn’t completely gone, and he was standing on the platform right next to the train, right next to the window that I was sitting at, showing off the knife he had and trying to taunt the older gentleman who had tried to educate him.

When that didn’t work, he started tapping the window aggressively with the knife with this anger in his eyes. I could see his face clearly because, of course, he was tapping my window, the window I was sitting at. My immediate reaction was a vocal one, “Are you kidding me???”

I knew the subway doors had already been closed, so he couldn’t actually do anything, which is probably why he felt safe enough to display his knife, knowing he wouldn’t actually have to do anything crazy, and still feel he got the fear/respect he needed. But, we weren’t moving. We were just sitting there. And I know, from having ridden enough subways since I moved here 2.5 years ago, that sometimes, you know, they open the door again, if there’s a delay for any reason. So, my next reaction, also vocal was, “Don’t open the door, please. Just don’t open the door.”

Well, the door didn’t open and soon we were on our way. The man who sat down next to me was from Africa, and we began to discuss the differences between living there and living here. When he got up, the older gentlemen sat down next to me. I told him that I in no way blame him for trying to educate the young man, and I respect him for what he tried to do.

Well, this experience really set me a little off kilter for the rest of the day. Mostly all I could think about was Sabou, and her having to experience this in her life, and it getting to the place of being a “normal” part of life as a kid in NYC, and that thought just terrified me. That’s not the life I dream for her. I am so glad that she is on her way to Mali in a few weeks, to have the freedom and safety to play outside, to go to market, to have fun in a very safe place.

It also got me seriously thinking about private French schools in Mali as an option for her. It’s a much safer option than being schooled in the South Bronx where we live. I’ve already asked Youba to pick up some brochures while they are there so we can look at the options together. After this experience, I will definitely reiterate that to him.

It also got me seriously thinking about getting the Hell out of the Bronx, out of the ghetto, and into some different living conditions. For my sake and for the sake of Sabou. I have this real estate hobby anyway, of always looking at places for sale even though I have never bought anything, and so I have some ideas of what’s around Queens. But today solidified my desire to contact a realty company in Queens and really begin the search for a safer place to live.

What I noticed mostly was that in the morning it was very difficult to stay focused at work, to complete my thoughts, and speak coherently. I know that this was not Lupus related, and probably Post Traumatic Stress from the crazy incident in the subway. It subsided I would say by lunch time.

Ironically enough, I got a phone call from the Day Care Council today, following up on a phone call I made to them last year regarding other day care options in my neighborhood. So, I had the opportunity to request information for Queens as well, just to keep the options open, and to get a sense of cost.

My Lupus event of the day was trying to get my Levoxyl prescription refilled. I received word that another medication had been refilled, so I knew that I’d be at the pharmacy anyway, and wouldn’t it just be easy to fill two at the same time. And yes, yes it would, in an ideal world. It turns out that I need doctor authorization for the Levoxyl. The pharmacy tells me that they don’t call doctors. So, I call my doctor’s office and they tell me that the pharmacy should call them. So, here I am, stuck in the middle again. And I really rely on my Levoxyl. I consider it the reason that I am even still alive and kicking, so don’t play with my Levoxyl. Well, it’s a long string of phone calls between me and the pharmacy and me and the doctor. With all hope in hand, after work, Sabou and I head to the pharmacy.

I am not at all thrilled with taking Sabou on the subway today after this morning’s incident, but really, what other option do I have?

While I am able to pick up the prescription that was already waiting for me, there was no chance of the Levoxyl. Yes, they had heard from the doctor, but the doctor had called in a 30 day supply and my insurance company only allows 90 day supplies. I have told the doctor this before, but I didn’t say it again today. Live and learn. So, they said that they would follow up with the doctor and for me to return to the pharmacy the following day.

OK, so not all is lost, and I decide to take Sabou out to a pizzeria just across the street. A treat for being well, not so great in the CVS, but for being with me anyway, and it’s dinner time.

Of course, there is no high chair. I should have just left at that point, but no, I decide to stick it out. She has full range of freedom and is running all over the pizzeria. Nice touch. Then we sit down to eat and she starts screaming, “Mama, POOP. Mama, POOP!” Now normally I am so excited at this. We are working so hard on potty training. But in this small pizzeria with one toilet and a long line of very big men and no changing table to speak of, I see no alternative but for her to just go in her diaper. Which she does, and then she just wants the diaper off. She is now running to the bathroom door, grabbing the door knob and screaming, “Mama, POOP! Mama, POOP!” And there’s nothing I can do. The bathroom is taken, there are many people on line, and all I really want to do is ESCAPE!

But that’s not really an option because that entails getting dinner packed up, her coat on, and her buckled into the stroller, which is not happening. Now she’s screaming about having to get her coat on and to get in the stroller. I finally got her coat on and picked her up like a football and got out of the restaurant. On the street I was able to get her into the stroller amidst loud screaming and much ugly looks from people passing us in the street.

Then my sarcasm showed up. “Oh wow Sabou, you are just so much fun to hang out with. It’s always such a joy to hang out with you.” Etc. No, I’m not winning any parenting awards, but I really just wanted to go home. She stank up the subway car, and was playing with the passengers, and I was just fuming.

One passenger said to me, “Look at that gorgeous face. Just look at those angelic eyes. You must not be able to get mad at her. I mean, how could you?” Inside I was like, “Oh, you have no idea.” But I responded, “Oh, I get furious sometimes.” But she continued to compliment Sabou on her angelic eyes and nature. Finally, I just calmed myself down and politely said, “Thank you.”

12/6/11 – Planning for My “Vacation” and Still Trying to get Prescriptions Filled

Today I made planning for my three week vacation from parenting my priority. First step, find a spa, and schedule a spa day. There’s this amazing spa in Queens that I’ve heard of, very popular with Korean families, and I figure it’s time to check it out. I invite my friend from Sunday’s excursion, and we are scheduled to go January 8th, the day after my home organizer comes.

Then I had this revelation, like, I live in NYC. People come here for tourism all the time and love it. What do they love to do? Go to Broadway shows. Yes, something I’ve only done once in my life. So, I contact a friend of mine who I know loves going to theatre and we’ve decided to choose an evening and go for the same day half-price tickets and I’m going to Broadway!

I also have my three-day weekend in Buffalo plan for Martin Luther King Jr. Day. It’s a chance to hang with my college buddies, and be in a place that I lived in and loved for many years. The familiarity and friendship will be most welcome.

I am also planning a hair salon visit, dinners in Manhattan, and movies, just because I can. I know I am way too excited for these three weeks, but there you are.

I am also planning to really explore Queens as well. To see the sites, check out some neighborhoods and really see what the options are. There are a few co-workers who live in Queens who have invited me to see their neighborhoods. One has an eleven-year-old daughter, and has invited Sabou to come play when she gets back. These are all offers that I need to take seriously to get the girl out of the Bronx and see other ways to live.

I have also decided to contact realtors in Queens during my vacation to get a better sense of both renting and buying options for me and my family. I have no idea how much of this I will really be able to accomplish, but I am just really really excited.

In terms of Lupus today, well, it was more Pharmacy Drama. There is always pharmacy drama it seems. I have been trying to get this prescription filled since yesterday. And today it’s raining. Now, I really don’t want to drag Sabou out to the pharmacy in the rain and have it not be there. So, all day I’m calling either the pharmacy or the doctor and getting nowhere. Pharmacy – “we haven’t heard from the doctor yet.” Doctor – “Yes, I already called that in.” and so on, and so on. So annoying and I was near losing my patience and my mind. I mean, all I want is some medicine! It was about 4:00pm when I finally got verification that the prescription had been filled.

So, all day I’m planning on this big trip back to the pharmacy with Sabou in the rain, and when I am just steps away from entering the subway to go home, it hits me, you know, it’s Tuesday. I have therapy today. Youba picks her up today. Oh My God, all that stress all day long, and Sabou doesn’t have to come to the pharmacy, and I get to go to therapy! Lupus fog is all I can say.

12/7/11 – Friend in town!

When I got home from work today, one of my closest friends had arrived from out of town. It was splendid. We went to Hard Rock Café at Yankee Stadium, my staple for out of town guests, and had a fabulous time. Sabou had a few outbursts, but in a loud restaurant like that, you really can’t hear her anyway.

It’s been wonderful catching up, good conversations, and watching Sabou get to know her and likewise. It seems like these visits could never be long enough.

12/8/11 – Day Off and Tourism in the Bronx

The first thing I needed to get done today on my one day off was to get Sabou to the pediatrician to order her Mefloquine for the big trip. We arrived at 11:00, our scheduled appointment time, but no doctors showed up until well after 12:00, which is a very long wait for a little girl who is terrified of doctors. But, it was a wonderful visit, we got our prescription, and the little girl is one more step closer to her big travel day.

Our other big plan today was meeting my friend’s cousins for a nice lunch in the Little Italy of the Bronx (Arthur Avenue). It’s a part of the Bronx I’ve never been to, and now I’m so glad I went. So many cute restaurants and the most amazing bakeries I’ve seen lately. It’s only three miles away from where I live, and the parking was really no problem, so I’m determined to take Youba on a date there, and to bring Sabou there just to walk around and to, of course, buy some amazing bread!

The adventure part of this trip was dealing with the NYPD. There is meter parking on the street. I had prepaid the maximum amount of two hours. When we left the restaurant, I immediately saw an officer in the process of writing me a ticket. I ran over to the car and said, “I’m here. I can move the car now.” He replied, “You don’t even know what the ticket is for.” I said, “I figure my meter ran out.” He said, “No, it’s your inspection sticker.”

So, I immediately pointed to my One-Year Extension sticker that I got from New Jersey, which makes my inspection valid until March 2012. Well, he didn’t know what to do. He must have called five colleagues on the phone, and about two stopped by. People wanted to see this anomaly and no one knew the laws. No one had been told about whether NY accepts extension stickers from NJ.

I told him that when I went to the NYS DMV to transfer my license and my registration over to NY, I brought this up and I was told in the DMV office that NY would accept the inspection sticker and not to worry about it until March 2012. So I did.

Well, several supervisors later, who also didn’t know the answer, I left the scene with my summons in hand: $65.00 fine or a valid inspection. Sigh. Now I have to dispute the summons on line within 30 days, but of course it takes about one week to show up on the website, so I have to make sure that I don’t forget.

We had a lovely evening at home, even with Youba. His professor didn’t show up to class, so a nice surprise for all of us, lots of baking and laughing and enjoying Sabou’s antics. Parenting is so much easier with other people around.

And my friend heads out tomorrow, she’ll be gone when I get home from work. Visits just seem too short and far in between. We need to figure out how to do longer and more frequent ones.

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 14, 2011

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