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.

11/14/11 Ė Playing Catch-up

Oh dear, itís been a while, so I guess I need to catch you up. I took Election Day when work was closed, but daycare was open, and treated myself to a grown-up movie complete with popcorn, and a day in Greenwich Village, just like I used to do in my youth. It was awesome, and yes of course, I found time to do some cute shopping for Sabou as well.

The movie was ďMidnight in Paris,Ē by Woody Allen. The whole movie was based in Paris, with lots of time changes between different eras in the art and literary world of Paris. As a former French major, it just opened up this whole other realm of myself that I havenít been too much in touch with lately. The movie was adorable and it inspired me to get Sabou to Paris someday, when sheís old enough to remember and before itís just uncool to be with Mom. Iím thinking like 7 or 8 or 9?

Then, since it was Tuesday, Youba was picking her up anyway, and I was able to get to therapy. Well, I broke down crying during the session. Thatís the first time. Itís so long ago now I donít remember the context, but I think itís a step anyway.

Friday was another day off. First daycare had told me that they were closed, so I planned a wonderful day in Central Park Zoo with a former student intern of mine. Well, it turns out that daycare was open, but I saw no reason to change this fun plan. And what fun we had. My student had only good news to share, as she is moving towards a cool job in Cali, with another former student/employee of mine, once she graduates. I love how the world comes together sometimes.

Sabou ran all over the zoo, pushing the stroller. Sheís much more interested in pushing the stroller than in looking at the animals. And we also took time to stroll through Central Park, which is in beautiful fall foliage. So, yes, I got a little bit of a fall for myself.

Then on Saturday, I went to the Bronx meeting of the Alternatives to Violence Project (AVP), once again, just trying to reconnect and bring myself into some sort of community here in the Bronx. Well, it turns out that the meeting was at Bronx Lebanon Hospital, where Sabou was born a little over two years ago, just a few days after a shooting spree took place at the ER. While no one was killed, just a few staff members injured, I like immediately understood why the hospital has fully opened the doors to our program. Now, itís an entirely volunteer organization, so the people involved just have that heart and are out to save the world. At one point we were asked to share one good thing that we are doing for ourselves and for the welfare of others. Oh man, I was like, huh? Like all I do is parent this baby, and work on keeping my own health, anger and frustration in check. Instead of it being inspiring, hearing all the amazing work the folks were doing, I just felt like I had nothing to offer, again. But, I am determined to stay involved in the group, even if I canít give them that much time and energy. They remind me of who I was.

Sabou tried really hard not to disturb the meeting for three hours. Then it was time to get back on the bus and go home. Well, she would have none of that. As we got closer and closer to the apartment, she kept saying ďMama, outside.Ē ďMama, CAR!Ē So I gave in. We had all of her stuff packed in a backpack anyway. Instead of going home, we went straight for the parking lot where I keep my car. I just drove to the town where I grew up, where two siblings live not far away. It was all very spontaneous, but we got to have lunch with one brother and his wife, which was awesome. And then she got to go hiking and to the playground and to play with two of her cousins. Her youngest cousin Sam is just four years old, and she just loves him to death. They had an awesome time running, jumping, playing, and back at my brotherís house, she went all out on the drum set and sat at the piano playing and singing. Just precious.

On Sunday, Sabou took a four-hour nap. I think the trick is really just keeping her extremely busy and active. We didnít leave the house or get dressed until about 2:30 on Sunday. Then it was just a short jaunt to the local park and playground and back home. It gets dark now about 4:45.

Good news, Youba is looking at flights for both he and Sabou to go to Mali for three weeks. My dream may come true after all. I think it would be awesome for her, and he just needs to go because one of his sisters is having a lot of medical problems right now. And I may have a real vacation very soon.

And, the cheapest fares are going through Paris. Youba is now playing with the idea of taking a long layover in Paris, maybe a few days, so that he can visit friends there. Amazing how things work. Sabou may be getting to Paris a lot earlier than I was expecting.

So this week is eye doctor and the skin Lupus study interview. Next week is blood work for the Lupus genetic study. The following week is back to the Rheumatologist. I wish that appointment was a bit closer. I just realized again that the Plaquenil will run out today. So, that means, somehow I need to get in touch with the doctor and the pharmacy, and get myself to a pharmacy, and work a full day, and get to the eye doctor. I will say this, with negative sick time and absolutely no chance for time off except time without pay, it is extremely difficult to get all the health related stuff done and work full time. Iím doing what I can, but I think it will just end up being a lot of time without pay. Sigh. Isnít that why you work, to get paid?

11/14/11 Ė Lazy and Inattentive and Pharmacy Madness AGAIN

So I went to for the eye follow-up today and it turns out that my field of vision is perfect. Even while I was doing the exam I could tell that I was seeing much better than the last time. Together, the eye doctor and I decided that my new diagnosis, having ruled out both glaucoma and Plaquenil toxicity, is Ďlazy and inattentiveí. And remembering how poorly I was feeling the day of the last visit, I think that fits well.

Tomorrow itís off to a follow-up GYN appointment. Yes, I know I just went, but thereís stuff going on, probably TMI for this blog, that I just want to get checked out.

And what do all these doctor appointments mean really, you know, more time out of work. And time is one thing I just donít have accrued. I am so thankful to my supportive supervisor and my amazing staff.

Now, letís talk about the pharmacy. So, I realized that I had almost run out of the Plaquenil, down to just two tablets actually, which is really just one day of medication. So first thing in the morning, I called the pharmacy for a refill. The computer I spoke to stated that I needed doctor approval. It also offered to do the reaching out to the doctor for me by just pressing a button on my phone. I went with it. What was I thinking? So, I worked all day, and at the end of the day I called back. It said that the pharmacy was in the process of working on the refill. I took that as a good sign. Again, what was I thinking? So, when I got home from the eye doctor, which was not nearly as long an appointment as I was expecting, due to the good results, I immediately called back the pharmacy and requested to speak to an actual person this time.

Well, the person, not the computer, told me that they had left a message with the doctor in the morning, right after I called, but had not received a response. I pleaded with her to try again, please, because I know that Monday is the night that he stays late. She put me on hold and called my doctor.

A few minutes later she came back on the phone and stated that she had been able to reach the doctorís office and spoke to a nurse who stated that it was fine to refill the prescription and for me to go to the pharmacy right away. I was so relieved. What was I thinking?

So, since this prescription is one of the ones that I had picked up in NJ last time, I knew I needed to go there, so I quickly picked Sabou up from day care and we headed off into the traffic of the George Washington Bridge, and the now $12 toll.

There was a LONG line at the pharmacy, of course, and we waited. Sabou did her best trying to be patient, but that only works but for so long. When we got to the front of the line I was told that there was no prescription for me. I told them exactly what I had been told on the phone. They said I need to go to ĎDrop Offí. That hadnít occurred to me since I thought the phone call took care of that. What was I thinking?

So, itís off to another line and a little less patience from Sabou. When we got to the front of that line, I was again told that there was no prescription for me and that no doctor verification had been obtained. I again explained everything that happened and was said on the phone, and they were like, ďYou didnít talk to anyone here. You spoke to our call center (WTH?) so we canít give you any medicine without our knowing that the doctor has approved it.

Now, Iím starting to freak out a little bit. I mean, I have no idea what will happen if I donít take Plaquenil. Iím only taking 2mg of Prednisone, so itís mostly the Plaquenil that my body is using to keep the pain away, I assume anyway.

I asked her, as calmly as I could, ďDo you have any idea what kind of pain I am going to be in if I donít take this medicine?Ē Yes, she knew, and she also knew that she couldnít give me any.

Long story short, she was willing to give me Ďa coupleí of pills Ďfor freeí and told me to come back tomorrow.

I use quotations because I was so hoping that Ďa coupleí meant, I donít know, 5 pills, just to keep me going while the pharmacy figures all of this out. Nope, she did, she gave me exactly a couple of pills; two to be exact. One Iíll take tonight and one Iíll take tomorrow morning and then Iím down to zero again. ĎFor freeí well, remember, nothing is for free in America, and the toll costs $12, so to have to come back tomorrow for the other I donít know 178 pills will cost me the co-pay plus the toll.

So this is where we left it. She will transfer the prescription to the Bronx pharmacy and I can pick it up there tomorrow. I told her my past problems with that pharmacy regarding this very prescription and why I started coming here. Letís just hope this all gets worked out.

But remember, today I have the doctor appointment in the morning, and then work and then the interview at 5pm in Manhattan and then Iíll have to get to the pharmacy before coming home. Can you say exhausted?

My best advice for people is, really, donít get sick. Itís exhausting to balance work, parenting and doctor appointments and trips to the pharmacy. Like nothing is easy. But we just need to keep on keeping on.

11/15/11 Ė GYN, First Lupus Research Study and Other Stuff

So, I did go to the GYN to see what they could do to help me, and nope, nothing. They claim thereís nothing wrong, and much like the ER back in March prior to diagnosis, told me to take Ibuprofin. And I got to thinking, this GYN met me prior to diagnosis. She was not recommended to me by my Rheumatologist. She may not know anything about Lupus, since so few doctors seem to anyway.

Now, I donít even know if Lupus has any GYN related stuff going on, but Iím thinking to ask my Rheumatologist when I go in two weeks if he can recommend any. And maybe sheís right? Maybe itís nothing? But surely it feels like something.

Then after work, I headed to my interview for the Skin Lupus Study. I donít know what I was expecting; research like I had learned in doctoral school? A study truly focused on understanding Lupus and working towards a cure? Well, this was very obviously market research being conducted by a pharmaceutical company. The description when I signed up for it seemed totally different. Iím not complaining, I just wish I had known ahead of time that those were the types of questions being asked.

The interview took longer than I expected, so I missed the Lupus Support Group. That makes it about two months since Iíve been to one, which is too bad really. But at least I have the ongoing online support that I couldnít live without.

I got home about 8pm. I mean I had a lot to remember and to do today: go to the doctor, go to work, and go to interview. Somehow, the pharmacy slipped my mind. I know that must sound crazy after yesterdayís experiences, but there I was, in my house, putting my baby to bed, when I realized that it was 9pm, I needed to take my medicine, and in that moment, I remembered that I donít have any. And of course, since I moved the prescription to the Bronx, that pharmacy closes at 9pm. If I had kept it in NJ, the pharmacy is open 24 hours, but with the craziness of NYC traffic, especially on the GWB, could I promise my husband Iíd be home in time for him to leave for work? I mean the baby is going to bed, itís not like I can pack her up and take her to NJ again, and it wouldnít have mattered anyway, since I moved the prescription to the Bronx in the hopes that Iíd remember to go on my way home from the interview.

Sigh, so here we are. Iíll be missing two doses of Plaquenil. I have no idea what to expect from my body, and I have an almost all day meeting at work, followed by another meeting in a different borough at the end of the day. All I can do is hope that I remember to go to the pharmacy this time. If the joint pain comes back, thereís no way I will forget.

Getting to the pharmacy today means that Sabou must come with me since Youba is at school. So I need to come home from work, pick her up from day care, and take her to the pharmacy, which is becoming a bit more of a hassle as she gets bigger, with more vocalized opinions, and tantrums like crazy now. It is what it is, and I have no one to blame but myself. At this point all I really can do is hope for a good day, despite the lack of meds.

Oh and before I forget, someone posted in a Lupus group on Facebook, a health journal, much like the idea I had for one based on the HIV one at work. I was so intrigued, and couldnít wait to check it out, but ended up not at all impressed with what I saw. It was basically a few pages for basic information, without a lot of room for things like prescriptions, and a lot of pages for notes, but not the specific stuff that the HIV one includes. It made me very impressed with our programís work, again, and even more determined to make a much more useful one for those with Lupus. Iím not giving up on this idea; I just really donít have the energy or the time.

11/16/11 Ė Back on Plaquinel and Update on the Mali Trip

So, there I was existing minus two doses of the Plaquinel, and I am happy to report that I felt no pain. I guess the drug sticks around for a while before wearing out. I really didnít know what to expect. And the little rebel inside me woke up and said, well, you know, maybe you donít need it after all. Maybe you can see how long you can go without the medicine. And then rational thought returned and reminded me that there really is no good reason to do that, to chance that, to go back to that awful place I was when this all began. So, right after work, Sabou and I headed to the pharmacy in the rain. Because of the rain, I really didnít feel like taking the bus and having Sabou have SO much walking to do, so we splurged on taxis to take us there and back. Yes, itís a $7 minimum charge for a ride. And while it was very convenient, $14 is actually more than the toll to NJ. And everything gets put into perspective, sort of.

She was great in the cab and in the store. Only grabbed one item off the shelf, and now I have really strong evidence that she is my daughter, because the one item that she chose was Godiva Chocolate Covered Pretzels. When I saw what she picked out, I just couldnít say no. I mean, I knew that obviously they were going to end up being for me, not her. Who can resist that? And when we got home, I took the Plaquinel with dinner.

The really big news of the day is that, this morning, when Youba got home from work, we booked his and Sabouís flights to Mali. They will go together and spend three weeks there. OMG, I am so excited. I am so happy for Sabou, because she just loves being outside and sheíll be outside all the time there. Sheíll be surrounded with his huge family who absolutely adore her. She is sure to come home with a lot more words in Bambara, and hopefully Youba and I will be inspired to speak to her more in that language so she doesnít lose it. I mean she is picking up the Spanish at daycare like nothing. I am also pretty sure that she will come home with pierced ears, as that is very important in her Malian culture, and who knows, maybe her first braids.

I am so happy for him, because heíll get some serious quality time with Sabou not interrupted by school, work, or his crazy sleep schedule. His sister is also really sick, so he needs to be with his family at this time. I canít imagine how he is able to live so far from family, especially when the hard stuff happens. Iíve asked him about that. Whatís it like, and if the life he has in the US is enough, in comparison to what he had in Mali. His answer was great, and put a huge smile on my face. ďItís not enough, but itís really big, you and Sabou.Ē Awww.

And as Youba put it so elegantly when we pressed the Ďsubmití button, ďMom just got vacation!Ē Yes I did, and I am so looking forward to it. To the chance to relax, really clean the house, get out of NYC and visit with friends, experience a little bit of my former self, prior to diagnosis, prior to parenthood. Today I feel very blessed again to be in this adorable little family, with my husband, who knowing it could be a very exhausting trip with Sabouís antics on the long plan rides, is willing to go that far with her alone. He is an awesome Daddy.

So now I am figuring out Christmas gifts. For Daddy I am thinking of a portable DVD player for the plane and some of her favorite shows on DVD, and a webcam that he can bring to an internet cafť in his town so we can Skype and see each other every day. I donít want Sabou to forget me. For Sabou, I must remember to get her prescription of her anti-malarial, not Plaquinel, because that doesnít work in Mali, but Mefloquine; and not to work as an immune-suppressant, but to actually protect her from Malaria, you know, what it was really created for. I will call the pediatrician tomorrow. I saved all of her summer clothes in hopes that this trip would happen for her. And now sheíll have another chance to wear all those adorable clothes and cute dresses. He better take LOTS of photos!

11/18/11 Ė Aura? Are you kidding me? And back to square one.

So, I woke up this morning, and was getting the baby ready for the day, when all of sudden, an aura appeared. It was just like all the others; all the others that I had over the summer that had stopped in August; all the others that we had blamed on the Prednisone and thus began the taper, which continues to this day. I donít understand. I just donít.

What was interesting was my reaction to it. Instead of just staying on the couch or in one place safely sitting down until it ended, I just went about my normal business Ė getting her dressed, fed and ready for day care and myself ready for work. It was like I knew what to expect and so there was no need to let this slow me down.

And the day was fine, really fine, until late afternoon. I had a meeting downtown, and traveled together with my boss and his boss. They chose the quickest route, which includes a change of trains and many subway stairs and a longer walk from the train to the office. I near thought I was going to die. I mean, just after the first long staircase to the first train, I was like already down for the count, breathing heavily and feeling the weak legs. Then to change trains, there were a few more flights of stairs, and even though they were going down, which is not as physically hard as going up, I had to hold on because of the weak legs and the onset of dizziness. Then there were the next set of stairs needed to exit the subway and by the time I got to the street level where we then had to walk to the office building, my body had had it. The back was killing me and the legs were just wobbly and weak. I was limping the best I could and still breathing a little hard.

Yes, and both level of bosses above me were there to witness it, my patheticness. Unbelievable. At least they are both aware of my illness. I came out about it to them on my first day of work, otherwise I canít imagine what they might have been thinking. I got through the meeting fine, you know, there are chairs. I love chairs. I even stayed late to catch up on stuff before the weekend. You know, cubicles with computers have chairs. I love chairs.

And then I headed home on the two subways it takes to get there. But I know which routes have the least walking between them, and made it home OK. By the time I got home, I was feeling good again, even did the long overdue dishes.

One thing I did notice at the meeting though, was this annoying cough and this dryness in my throat and inability to properly clear my throat. I had some cough drops with me, so as not to bother the meeting too much.

After the dishes, dinner and some hangout time with Youba and Sabou, I crashed early, and just woke up. There is now this tightness in my chest and still the dryness in my throat, and the dry cough. And Lupus continues to confound me.

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 November 21, 2011

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