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, sheís 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.
Editorís 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.
4/25/12 Ė Canít walk well
Today is a very big day. I am driving to Staten Island and back. I was very successful the last time I took this challenge on, and got inspired to do it again. But first is a site visit to an agency in Harlem.
Well, the agency is on the second floor, and I had to drive there first. Driving always makes me limp. My legs get weak, shaky and painful. Even though I hadnít driven very far or for very long, I was in a lot of pain afterwards and Harlem is the small leg of todayís trip.
After the meeting, it was back down the stairs. OMG, I had to take it really slow and hug the wall the whole way down. Very impressive when youíre walking with colleagues from other agencies, I assure you.
As I go limping back to the car for the long trip (one hour or so, which is my self-proclaimed limit for driving) it occurs to me, can I drive? Is this even a good idea? But, you know what, people are depending on me. I have a presentation to make in a program that I feel deeply connected to. So, I get in the car and hope for the best.
Now, itís NYC, so driving and traffic are their own problems without Lupus thrown in. I was doing good, making good time until Brooklyn and lane closures just slowed me down. But, really, there is no control of these situations and I just stayed calm and patient and figured Iíd get there when I got there.
So, I arrive, and now the legs are worse. Itís hard to walk, the limp is noticeable, and Iím supposed to go up there and present. Well, I was just open and honest. I told the group Iíd be either leaning on something or sitting down while I do the presentation, and there was no problem. I just moved forward doing the presentation without all the movement I usually have when I present. And it was just fine. I found that I was able to keep the folks engaged and energized by the topic even if I was not walking around that much. It was good to take note of.
For so long I have been traveling around, giving presentations. Itís something I LOVE to do. When I take it on now, it feels like I get back in touch with who I was and the life I led prior to Lupus.
Then it was back in the car for the long ride home. I chose to go through NJ this time, and avoid all the NYC craziness. It was awesome. It felt so good to be on the open road, with no tall buildings making me feel locked in like NYC can do. I wonder if people lose their peripheral vision here. Anyway, I was free and driving on the open road with big open spaces on both sides, and youíre probably thinking how NJ is famous for its horribly ugly huge highways, but Iím telling you, compared to the misery of NYC subways, and tall buildings, and crowds, Iíll take the open road in NJ any day.
I felt like my old self, driving along, free as a bird, singing to my heartís content, and there was no traffic anywhere along the route, not even on the Bridge. I got to this place of amazing relaxation and lots of smiles. I love these moments.
Back at home, the AVP facilitator from San Diego had returned during the day, and Iíve got company now until Saturday. What a gift. What a total gift. Sabou was completely showing off in front of her, and we had a great time. Once Sabou went to sleep we had a chance to just hang out, chat, discuss AVP work in prisons and her upcoming trip to Ireland. I love when people come and visit. Itís really a joy and adds so much to my home.
Itís back to Staten Island again tomorrow. Wish me luck.
4/26/12 Ė Much Better Today
Another drive to Staten Island today, and I have to say, I donít think I even limped when I got out of the car. Aah, the randomness of Lupus. I was feeling so good today, no pains at all, that when a group of participants broke out in song ďUnder the BoardwalkĒ I just had to chime in. When one started dancing, well, whatís the use in just sitting there; I danced because I could, not because I should, not because I look good. It felt great. I sat down and immediately began wondering what the aftermath would be.
Well, I got home, and I was just exhausted, the all day workshop, the drive back and forth, the combination of all of it. We had planned a nice evening out, since the Yankees are not in town, but you know what, I couldnít leave the house. Once I was home, thatís it, I was home. We shared a great salad left over from the workshop and called it a day.
4/27/12 Ė You mean yesterday wasnít Friday?
Oh man, what a disappointment. I woke up this morning assuming it was Saturday, but no, it was just Friday. Hate when that happens.
As I entered the office, I noticed that there were Lupus brochures laid out on the counter where random materials, primarily about HIV, were displayed. It shocked me. It really did. And I kept wondering, who did this? I started asking people. They all thought I did it. Uh, no. I donít think it would ever occur to me to place Lupus brochures in an HIV department. The names were Lupus and the Skin; Lupus and the Kidney and Lupus and the Heart. Iím immediately thinking that there is sure to be absolutely no good news in those brochures and wonder what peopleís reactions will be, if any.
Somehow I made it through the day, and was wracking my brain over what to do tonight, my guestís last night in Bronx. Well, sheís got it all figured out, and it turns out that she loves Jamaican food and Ginger beer. Thatís one cuisine my neighborhood is good at and we share a wonderful Jerk Chicken dinner. Youba came home and it was a big happy party in my apartment.
4/28/12 Ė Community Spirit in the Bronx
I had volunteered to participate on AVPís behalf at todayís community event called Push 4 Peace. Iíll be honest, I was less than motivated this morning, and wanted nothing less than to go this event. I have no idea when I became a Debbie Downer. Itís like I really donít recognize myself sometimes.
But, I need to keep my word. So, me, Kathy and Sabou head off to hopefully spread the word about AVP in the South Bronx.
Well, the event was AWESOME! I am so glad I talked myself into going. It was exactly where we should have been. We shared a table with a Peace Dojo that uses martial arts and meditation techniques with at-risk youth to lessen their propensity for violence. What a perfect fit.
Then Sabou and I wandered around the other tables and I found an ex-offender organization founded by none other than an AVP facilitator. And the circle widensÖlike it always does when you step back and expect the best. I started to feel like my old self. The organization is a possible site for our ongoing support groups.
I also need to report that Sabou did not have one, not one tantrum while we were there, so even that part worked out well.
We lasted about two hours, and I just couldnít stand anymore, so we headed home, secure in the knowledge that AVP was well represented and making good connections. Plus, Kathy had this flight to catch.
Youba and I got to hang out alone tonight when Kathy left. He shared his desire to go on vacation. He would like to go to Paris. He didnít say he would like us to go to Paris, he said that he would like to go to Paris. OMG, did my Prednisone anger come up really fast. I told him I need a vacation too. I want to go to Paris too. I sounded like a five year old I think, but the thought of him leaving me alone with Sabou for one week, two weeks, like, Oh my God, complete terror. What ifÖWhat ifÖWhat ifÖyou know, just fill in the blank.
Anger was getting me nowhere. Then I just got sad, and let him know that if he goes Iíll be really sad. Finally he asked me where I would like to go, stating that I could go on my own vacation when he gets back. Uh, What? I tell him how I would like to see the Grand Canyon, Las Vegas and New Mexico. You know, places in the States that Iíve never seen. Heís like, well we can do that together over a long weekend. And in that moment, travel, travel anywhere, as a family, became an option.
We talked about why we all couldnít go to Paris. There would be no room in his buddyís apartment for all three of us. I told him, either we all go, or he brings Sabou. I want her to experience everything and not miss out because of me. Shoot, Iíve been to Paris. She hasnít.
Then, something magical happened. He said that if we were to go to Holland, where his cousins have a house in the country, then all of us could go. Wow, and in that moment, traveling to Europe became a possibility for the first time in my mind since diagnosis. I keep imagining Sabou playing in green grass with tulips all around. I know, stereotypical Holland, but I would love to spend some time in the Holland countryside, drinking tea on a porch and enjoying pastries and smelling tulips, of course. He said heíd call them to see if it would be possible. Fingers are totally crossed for this.
4/29/12 Ė Soccer, Central Park, Picnic, MansionÖ
Today was Sabouís third soccer class. She did great, and we had all kinds of visitors. My sisterís family came down from Poughkeepsie with picnic in hand to witness the soccer cuteness and enjoy a beautiful day in Central Park. A former student, who is graduating and off to a new career in California, came by to hang out before she leaves.
Yes, the sun was shining. Yes, I was wearing my Coolibar 30 SPF hat and cover. Yes, I kept wondering what the consequences would be. But you know what, you just gotta enjoy what you can when you can.
Sabou was awesome on the subway and on the bus on the way to the park. My naÔve self thought like wow, sheís really getting used to this. Sheís starting to behave. Weíve hit a milestone in travel.
She was great in the class and loved playing with my sisterís kids in the park. She even went to the bathroom with my sister, without Mommy, and properly used the potty. So proud. We were doing so good. We really were, and then, then it was time to say good bye and get back on the bus to go home.
Well, all that so-called progress, down the drain. First she dropped her apple and trauma ensued. We quickly replaced it with a pear, calling it a green apple. We were fine for a while, and then that ran out of pizzazz for her.
We got on the bus and she had a tantrum because she doesnít have her own metrocard. ďMY TURN! MY TURN!Ē I made the mistake of giving her one and it only made things worse because she couldnít reach where the metrocard goes in. When we tried to do it together, she still lost it and now weíre holding up the line of people behind us.
We sit down and she cannot calm down. Now she wants to push the stop request button, constantly. And then she wants to sit far away from Mommy. She goes to another seat on the other side of the bus and I join her only to hear her then begin repeatedly screaming, ďMommy, go! Go away! Over there!Ē Lovely.
Needless to say, I couldnít wait to get out of that bus. Oh really, why? Is the subway is so much better?
Finally, we reach our destination and itís off to the subway, and another tantrum caused by her lack of metrocard. No, the metrocard did not survive the bus ride. Really, how could it? It didnít have a chance. So, we resistantly make it down to the platform, and she gets to practice the difference between A and D. No, we canít take the A train, we need the D train, etc.
I donít remember the subway ride, which could mean anything, and we made it home. We had time to rest before our next big adventure. Back to the mansion.
Iíve been invited to a Community Ideas meeting at the mansion that is my new best friend. My goal is to find space where AVP can meet in the Bronx and not have to meet in my house. And the beautiful space that the mansion can provide, well, itís just perfect. And Iím feeling very connected to my community, for the first time since I moved here three years ago.
The meeting is great, complete with tea and cookies, yes, definitely my speed. They were so welcome to my idea that we now have our Saturday meeting scheduled there. Yes, thatís how easy it was!
So, we can meet as a council at the mansion until at least June, and then we need to negotiate again. There is also the possibility of holding support groups there. I think workshops could be a possibility further down the road once weíre established. And I feel a part of my community even more now. Like the old me, organizing things, getting out there, doing things I believe in and all that good stuff again.
Once the meeting was done, it was time for Sabou to PLAY in that big beautiful yard. There were several older kids milling about, running around, playing tag-like activities, and she just joined right in. Yes, my girl is definitely more comfortable around older kids. What is that? Daycare? Cousins? Mali? I have no idea. All I know is that she acts completely different around older kids than she does around kids her own age, like in soccer class. I am SO glad I signed her up for soccer, for real.
Itís been a wonderful outside kind of day and itís time to go home. As I walk home, I reflect on a few things.
1. All but one of the people I met at the mansion today was White. Like the front lawn was completely covered with white adults and children, in my neighborhood, in the middle of the Bronx. It struck me as weird, and I know thereís still a lot of work in terms of community building that needs to take place.
2. There was one woman of color at the meeting, and she was the only one, besides me, who saw the potential for real needed services to be provided out of the mansion. She mentioned the need for legal services, since the mansion is located directly across from Housing Court. I really liked her energy and her ideas. The others were very much interested in art/entertainment, which is also great, and maybe we can find a nice balance between the two.
Today we spoke to Youbaís brother in Bamako. He reassured us that there are no more problems to speak of. He even sent us new photos of our second house. In the midst of all the turmoil and coup, our house keeps getting built. Mali amazes me. He stated that there should be no problem with Sabou and Youba returning to Mali next year for the annual trip. This makes me so happy. I also receive a phone call from my friend in my Peace Corps village, who recounts to me the same story. There is hope. Maybe my girl can return to Mali again this winter, as was my goal since she was born Ė to spend time in Mali every year with her family, learning language and culture. It looks like it may just happen.
4/30/12 Ė OUCH, Weirdness and Counter Coup Attempt
Wow, I woke up this morning and did not feel good. Iím trying to remember what all was hurting, but it just kept moving all day. There were random pains in my left knee, both hands and fingers, and these achy painful tingling legs, and then there were these random pains in my head.
Oh yeah, and the exhaustion. I really could not properly wake up this morning. Sabou was no better and it was quite a challenging morning. I think at some point I gave up and passed out on the couch asleep for a good 15 minutes.
I donít know how it happens, but somehow we always make it to daycare. Somehow Sabou finally gets dressed, fed, hair and teeth brushed and we are on our way. I have no idea. But today, the whole morning Iím thinking I shouldnít even bother going to work today and just take the day to rest. But I always talk myself out of it. Why? What if every day starts being like that? Am I just going to stop going? As long as I can, I will work. When I canít any longer, I wonít.
The three subway rides were really uncomfortable. Lately Iíve been so proud to actually get up and switch to an express train, knowing the possibility that I may not get a seat, but today, nope, just stayed where I was and took the local. Itís very symbolic for me and reminiscent of what it was like this time last year when I was in the process of getting diagnosed.
By the time I got to work, my legs were feeling so strange. They were like achy all over, pains in the knees and behind the knees, and this tingling like sensation, as well as an overarching achiness and weakness. It was like every time I stood up, I couldnít get my balance and it felt like my legs would just give out beneath me.
Now, I have a noon meeting downtown. Iíve already taken three trains to get where I am, and I am finding it hard to stand and stay balanced because the legs just arenít steady.
Iím really trying to figure out how to get to the meeting, maybe just leave earlier so that I can take my time walking. But no, a brilliant co-worker reminds me, I can call in to the meeting on the conference call line. Brilliant, I tell you. And thatís exactly what I did. Yes, for the first time, I cancelled my plans at work because of how I was feeling. I really hope this does not become a trend. It was a huge relief and gave me a feeling of defeat at the same time. But, we can only do what we can do.
Just even sitting at the cubicle was completely uncomfortable. I tried sitting with legs straight, legs bent, and nothing, just nothing soothed them. And then these random shots of pain through my head, like OUCH, what theÖ? And then they were gone.
Some interesting things happened at work today. Well, first, it was very visibly obvious that I was having a bad day. So that said, a co-worker came up to me and asked me if I wanted anything because he was going out to get a sandwich. I was SO grateful, I canít even tell you. And I got a hot tea and a pastry at a time when I really needed it; so nice.
Somehow I made it through the day and itís time to go home. I just take my time walking and dealing with the subways. Iím exhausted and not quite right when I pick up Sabou. We do our usual routine of getting the mail on the way home. A letter has arrived from my health insurance company. Itís a form letter, letting me know that starting 7/31, my Rheumatologist, the one I trust so much, the one Iíve built a good relationship with, will no longer be in their network, and I have to find another Rheumatologist.
Now, Iím freaking out. Itís been a really bad day. My legs were something so weird today, and now this? Oh man, was I upset and it set me off on yet another rant about how insurance companies and corporate America have no right to decide my health care.
I tried to calm myself down by checking out Facebook, but as soon as I log on to the computer, I find out that thereís been a counter coup attempt in Bamako. Sympathizers of the former president, red berets, attempted to take back Mali. Well, they were squashed by the Putchists. There was a lot of gunfire, the airport was closed and there are several people dead. The coup leader Sanogo is still in ďpowerĒ even though he supposedly gave power to the current interim president and the newly named prime minister. You just got to wonder.
Can this day get worse? Please never ask that question. I just say call it a day at this point. But of course I canít. I just canít leave this insurance fiasco alone. Basically, Iím scared.
First I call the 24-hour nurse line available through my insurance. We had a civil conversation, but really I need customer service, I said, I know but theyíre not open. Only you are. I told her I was going to contact the SLE Foundation to get recommendations on Rheumatologists they recommend, and who take my insurance. I also thought Iíd try the EAP program at work. EAPs have helped me find assistance in the past, and the brochure said that they help navigate health plans.
So, I email the Lupus Foundation and go to sleep.
5/1/12 Ė Lupus Awareness Month
May is Lupus Awareness Month, so Iíve decided to place a fact about Lupus, which I am getting from http://www.lupus.org/newsite/pages/lupus-awareness-month.html and placing it as my Facebook status each day this month. Iíll include them here as well.
Lupus Fact #1: Lupus is an unpredictable and complex autoimmune disease that causes inflammation and can damage any organ in the body with life-threatening consequences.
Today I woke up and felt completely fine. The legs were strong and sturdy again. It was like nothing happened. I was able to walk just fine. Now I am beginning to feel like Dr. Jeckyl and Mr. Hyde, and you just never know who youíre going to get in the morning. Itís annoying and exhausting.
The first place I called today was EAP. Well, they were much less than helpful. They asked me who told me that they could help me find doctors and navigate health plans. I told them that I have the brochure in front of me and I read it to her word for word. She simply said that no, they donít that, conversation over. This is not going well.
I also received a list of doctors from the Lupus Foundation that they recommend and who by their sources, also take my insurance. All is not lost.
Today I also made a point of calling my doctor to find out what they recommend. They informed me that they are doing everything they can to remain in the network, to the extent of hiring someone whose sole job will be to deal with the horrible bureaucracy of United HealthCare. There are other patients of his on this plan and he is determined to make it work. The nurse said that I do not need to find another Rheumatologist because she is quite sure that he will be able to continue to treat me. Phew. A little bit of a break. And I am choosing to relax about it.
When I got home, it was really nice out. Like really nice, and we bumped into Sabouís best friend from daycareís Mom on the sidewalk. Lately this has been happening more and more often, which has been wonderful. So, on the fly, we decide to take the two girls to the park and OMG how cute was that. They are like two peas in a pod. Amia kept calling Sabou her ďfavorite friend.Ē And while the girls played in the playground, the two moms got to hang out and get to know each other. It was a joy, so much fun and a great time. Then, since we were close by, we headed to the McDonalds near Yankee Stadium and treated the girls to some Happy Meals. They were just too cute to watch together, and we made a pact to do this much more often.
And now I have two friends with kids right here in the Bronx, and more reasons not to leave, not right now anyway.
5/2/12 Ė Legs are still good
Lupus Fact #2: Ninety percent of the people who develop lupus are female. Males also can develop lupus and their disease can be more severe in some organs.
Once again my legs are absolutely fine. I am walking strong and steady as I go. It is just so unpredictable, kind of like whatís going on in Mali right now. There are differing stories. Some are saying that the ECOWAS soldiers had entered Mali and were responsible for the counter-coup, and others are saying that itís members of the presidential army that are still supporting the former president. Some reports are saying that the airport is open, while others report that it is closed until May 7th. You just never know.
This is a billboard that has just shown up all over Bamako. The north of Mali, now under Islamist rule, is crying and there is a BIG question mark over the rest of the country. I donít know what CAV is, and Iím hoping my blogger buddy Bruce (www.bamakobruce.wordpress.com) will be able to tell us more as he hears.
Once home, the only excitement was trying to pick up the laundry. Sabou was not feeling very cooperative and really didnít want to go. She very reluctantly followed along, screaming for about a half a block at the top of her lungs, and then just wanting to be held and carried by Mama. Mama, who is now trying to carry the girl on one hip while pushing the shopping cart with the other across the Grand Concourse. This is not a pretty site. My Lupus muscles canít take it, but we must persevere, we canít just stop in the middle of this big street. We make it to the laundry and it seems like everything is going to be fine. Yes, and it was until she told me the cost. I was four dollars short. Can you believe? And my neighborhood is a cash only, or welfare benefit card only kind of neighborhood. Barely any merchants in my neighborhood accept debit or credit.
Now, Iím in a credit union, so not all ATMs are available to me, but the one down across the Grand Concourse and down the hill another block, which is of course at the McDonalds, does accept my card without a pricy fee.
So, we leave our laundry there and head out to the McDonalds. I can only hope that Sabou will remain calm and cooperative enough for this trip, because remember, we have to then go back up the hill a block, cross the Concourse again and walk another block back to the Laundromat.
My other concern is how to get her in and out of McDonalds without ordering food and without a tantrum. No bother, we make our way. There is no unsightly tantrum and she fully accepts leaving with only cash and no food.
Now, weíve got the laundry and itís time to go home. Sabou doesnít want to walk. And with 40 pounds of laundry in the shopping cart, there is absolutely no way I can navigate the cart and carry her on one hip. She has to walk. Well, that is not happening, and she is now climbing up the cart to sit on the top of the laundry. It is very precarious and we just move very slowly. Once across the Concourse, she is finally willing to walk the rest of the way home. Home safe and sound.
Sabou begins to place both Curious George and Bear on the potty. She cleans them off and places a diaper on each one. Such a maternal little girl. I dream of the day that I no longer have to deal with diapers and potty training. My hope is that hanging out with her friend Amia more and more will help that along.
Then she really got inspired, I think by taking off Curious Georgeís t-shirt, and she brought me to the closet to take down her Halloween costume from last year, the one, the only Curious George. So the next thing I know, Sabou is completely dressed up as Curious George. This I couldnít keep to myself, and we Skyped with Nana who got the biggest kick out of it.
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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