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.

8/16/11 Ė Pharmacy Fun; Support Group and Feeling Ready for Neurology

Once again, I realized that I am running out of the Plaquenil. So, on Monday, I went direct to the pharmacy after taking the girl to the pediatrician. She has a clean bill of health. No issues to speak of. But man can that girl scream!

At the pharmacy, I was told that they did not have Plaquenil and that I would have to come back the following day. Then they handed me back my prescription. I said, ďDonít you need that?Ē It bothered me that they were giving it back, like why, if youíre planning to fill it the next day? They said, ďWell, we canít promise that it will be here tomorrow either.Ē Now, Iím freaking out! Iím already tapering off the Prednisone, so the Plaquenil is all I have left to keep the intense pain away from my body. I ask them to find out if another pharmacy has any in stock. They check another one nearby, and same issue. I ask them to try the store in Harlem, on 125th Street. They say that they donít have the phone numbers to all the stores, and canít do that for me. Oh man, I was pissed and terrified at the same time. I canít imagine going back to all that pain. They said, ďWe seem to be going through the Plaquenil very quickly.Ē I said, ďYeah, probably because of me!Ē

So, in that moment, I remembered the experience of stopping off in the pharmacy, five minutes up the road, right over the George Washington Bridge in the suburbs of NJ. I remembered that itís open 24 hours a day, and that I was able to fill my prescription there in 10 minutes. At this point, I am extremely grateful that I have a car and can get out of this God-foresaken city/ghetto environment where I live.

After leaving the pharmacy, and eating dinner, we walk directly to the car and drive over the bridge. Sure enough, they said it would be ready in 10 minutes. Not only that, instead of the three-week supply, which is the limit that my pharmacy will give me at one time, they filled a three-month supply! I donít have to worry about this prescription for a long time now. Phew. Relief, and somehow that trip definitely seemed worth the $8 toll. Not sure Iíll still agree once they hike the toll to $12, but for today, it was worth all of it.

And I am constantly reminded of the difference between how people get treated in low-income urban environments and how people get treated in higher-income suburban environments, even when they are going to the same chain, even when they are just minutes apart from each other. This is one aspect of the US that has always bothered me, but now that I live it and experience it on a personal basis every day, living in the Bronx, it touches me even more. And Iím lucky. I have a car. I have a job. I have access to other places where I can get what I need. I donít know how many people in my neighborhood have those luxuries.

On Tuesday, after work, I went to support group. Again, we went around and shared about where we are and how weíre feeling. I gave the group the run down of my new symptoms and my taper off of Prednisone. Iím down to 5mg a day, and go back to the doctor next Monday.

I told them about the auras, and no one, not one person in the group had any idea what I was talking about. I described the flashing lights for them. I am determined again to draw it some day even though I suck at drawing.

I told them about the hand tremor, the uncontrollable shaking. No one seemed to respond to that symptom either.

I told them about the whole world going to the right, and the dizziness while driving. One woman shared that she has had that experience. Man, did that relieve me. I mean, I canít be the only one.

The support group facilitator stated that itís probably time to see the neurologist. People in the group seemed to agree. And you know what, Iím ready. When I go to the Rheumatologist on Monday, I will definitely bring this up.

8/17/11 Ė Still Confused and Overwhelmed by Travel

So, thereís this conference Iíd like to attend in Vermont. Vermont is a mere three hours away. I mean, my parentsí place is four hours away, so youíd think Iíd be able to figure this out. Well, since the dizziness display on I-95 the last time I drove long distance, I really donít trust myself to do this kind of a drive alone.

Now, on top of that, is, of course, my daughter, Sabou. She would need to come with me, which means I need to bring a Nanny, most likely my Mom, and if my Mom comes, then most likely my Dad will come as well. So, that means finding a place that can accommodate all of us comfortably, feeding all of us for the length of the conference, and still figuring out how we can all get there.

So then, does it make sense for my parents to drive to the Bronx the day before, we move the carseat into their car, so they donít need to pay for parking down here, and we all head out together to Vermont. That seems safe, but is a huge extra step to ask them to do.

Then somehow I remember that I have a training in Central NJ the day after the conference in Vermont. I donít present until the afternoon, though, so there is time to make it. Really? Am I really thinking this is possible?

And that weekend is my nephewís birthday party, which is in a location about half-way between Vermont and Central NJ.

So, do we go to Vermont, do our thing, and then leave for NJ, by way of my brotherís house, drop off the baby and my parents, and I drive down to NJ for the training, or do I need someone in the car with me to make sure I donít have another dizzy spell while driving on a highway? Does one of my parents stay with the baby and the other accompany me to the training? At this point, does any of this make any sense at all?

All this is to say that I have completely given up on attending the conference in Vermont. My mind just canít figure this stuff out. Iím sure itís a disappointment to my parents who would have loved that time in the fall foliage with the baby, but realistically, health-wise and financially, I just canít imagine doing all of this, and to what end, just utter exhaustion?

And I remember another version of me, where this kind of running from this conference to this training was a regular occurrence for me. It made me feel alive. Now, I am just confused by all the logistics involved, and sometimes these things feel like they are just no longer options for me.

I have hope that I will get to the point where these types of logistics will not feel so big and overwhelming. And maybe things get progressively easier as the baby gets older as well, but at this point, there is just no way.

8/18/11 Ė A non-Lupus kind of day

Today was a great day. I was given a few extra projects at work, which made me feel like my skills and abilities are really respected. It lifted my spirit so high, that I donít think I even thought about the Lupus much today, except when I went outside.

It was raining when I left for work this morning, and so I didnít grab my SPF 30+ hat. Well, by the time lunch rolled around, the sun was out and shining bright. My face felt like it was burning on the way to the restaurant. Note to self Ė keep the hat in my bag like I do the umbrella. This is NYC after all.

8/19/11 Ė Bad Mood Hits Again

So work was fine. I actually had fun, hung out with co-workers, there was a party with cake and junk food (my favorite kind), just a laid back kind of Friday. I was hoping for a continuation of this goodness once I got home. Sigh.

When I got home, it was like my legs couldnít take anything else. They just felt entirely weak and achy. I made a quick dinner for Sabou and I and just laid down on the couch. Sabou is also getting sick, no fever, but just hoarseness and stuffynoseness. Iím watching it closely because sometimes her stuffynoseness turns into lung infections, poor thing.

But, by like 7:30, I canít take it anymore. I am completely exhausted. Youba came home, so I just went to lie down. I tried to get Sabou to join me, to settle down to sleep so I could put her in her own bed, but she wasnít having it. She is also not quite herself with the nose anyway, and just cranky as all Hell. I had no patience for it. She just kept crying and crying and complaining and complaining and it was driving me crazy because my exhaustion could just not handle it. I got up and went to another bedroom. She did not follow.

I am so lucky to have Youba, who is calm and can really handle her at times like this. I completely passed out, and slept right through to 4am. I woke to find them both sleeping soundly, and it was a beautiful sight.

I wish that pain and exhaustion and achyness did not so directly impact my mood and my patience with my toddler. I wish that I could be there for her all the time, but there are limits. I keep telling myself that this will get better over time, as I learn to live with this disease, and she gets past the toddler years, but really, I donít know if itís true.

Just need to learn gratefulness that I have support from Youba when Iíve reached my limits. Thing is, weíre supposed to have this amazing fun weekend. Iíve got plans with a friend to take her out to lunch, go to Central Park playgrounds (if weather permits), or to the Childrenís Museum (if weather acts up). On Sunday, thereís a birthday party for my nephew an hour and a half north of here. But Iíve got to watch her. And I have to figure out if I can handle the drive by myself, or handle the girl on the train by myself, if Youba decides not to come. Sigh. Itís never an easy answer with me, and that starts to grate on my nerves from time to time.

Canít wait to get to the doctor on Monday, and get the referral to the neurologist, and see what happens next.

8/20/11 Ė Made it a nice day

So, Sabou woke up again with that stuffynoseness but still no fever. Youba was very concerned and asked me to at least call the doctor before heading out for our adventure. Well, the doctorís office didnít answer, even though theyíre open on Saturdays. Weird. So, we waited, but Sabou was just playing and enjoying herself in the house, and she kept grabbing her shoes and Mommyís shoes saying ďBye Bye.Ē So I took that as my cue, along with the fact that I was getting extremely cabin feverish, and we headed out to Central Park to visit with an old friend.

It was awesome. It was like as soon as we got out of the house, her nose stopped being a problem. Lunch was first, just to see how she did, and there were still no issues with the nose, so our day continued in Central Park at one of the playgrounds for the littles.

Sabou had an awesome time. She completely surprised and impressed me with her skills that I didnít know she had. This girl is truly agile and strong. And by the end of the day, she was also soaking wet. Fully took advantage of the sprinklers.

The sun was blaring down like no oneís business and I stayed with it as long as I could. My friend was able to take care of Sabou so I could rest on the bench in the shade. It was so cool to see Sabou grab for her hand and pull her along for the adventures. They went down slides together and everything. So cute. Iím telling you, friends and family and support (physical and emotional) are the only ways to get through this whole living with a ridiculous chronic illness thing.

And success was confirmed when Sabou fell asleep in the subway and then continued to sleep for another two hours when we got home. That means that Youba and I also got in a two-hour nap this afternoon. And joy abounds.

One thing I havenít shared yet is that I have applied to be a model for a Lupus awareness campaign. Thereís an artist in NYC who is creating a calendar of people living full lives despite Lupus. There will also be a documentary piece to it as well. I had so much fun choosing which photos to send along, not saying Iím all that, but at least Iím a little interesting, and the rest of my family is just so damned cute, theyíd be crazy not to take us.

The other good news is that Youba has agreed to come to the family party, so there is no concern about me figuring out how to drive or handle the train situation with a toddler on my own. Thank you to Youba and all supportive husbands out there.

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 August 22, 2011

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