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.

12/27/11 Ė Termination with therapist

So, at therapy today I brought up my reaction to Sabou hitting me in the face and asked him why I lose all my self-esteem. He looked at my reaction, and explained that I am reacting in a way that is part of the cause of the lack of self-esteem. He recommended that I act in a self-preserving way, getting out of the way of her hits, and respecting my feelings, so that if after the time-out I am still upset, then I donít have to hug her. I can show her that Iím upset and refuse to hug her. He also said that I need to say less. No discussion. Just show her that it is bad and put her in time-out. He said that will help me feel better about myself.

I also told him about Youbaís school schedule, and we have three more sessions before we end.

That night when I got home, Sabou was at it again. Coming after me and trying to hit me. I got out of her way, and told her no. Youba intervened, telling her not to hit mommy and he was the one who put her in time-out and I felt completely loved in that moment by him.

12/28/11 Ė Flight to Mali

I donít think I could even concentrate well at work. Todayís the big day. The big trip to Mali!

First things first, itís Wednesday, and time for yet another dose of Mefloquine, and again the juice with the straw worked like a charm, and I gave the medicine to Youba to pack and reminded him to give it to her every Wednesday. I made sure he had the letter and her birth certificate to carry with the letter, proof that he is the father, and I recommended he take our marriage certificate as well, proof of my name change from when the baby was born to when we got married.

He tells me that some friends are coming over. So I run out to the Jamaican restaurant so we have something to serve. What fun when Sabou and I got home. It was a couple from Mali, the husband he had worked with in Bamako, and they both won the green cards around the same time. This guy lost track of Youba over the years, recently found him, and decided to come up and reconnect on this day, the last chance before Youba leaves for Mali.

It was wonderful to hang out with him and his wife, speaking Bambara, laughing, and all of it. It made me wish I could also go to Mali. But, no, not this time. This is Sabou and Youbaís time.

What was perfect is that I had decided not to go to the airport because Sabou was used to saying goodbye to me in the apartment, but not outside nor in an airport. I wanted it to be as normal as possible.

She is amazing. All the preparations for this trip worked. She grabbed a carry-on, and said, ďBye Bye Mama. Come on Daddy. Letís go Daddy. Daddy, letís go!Ē and she dragged that carry-on down the hall to the elevator.

Because Youbaís friends were here, they were able to help me get all the suitcases into the cab, and they were off, as easy as that.

And the house was peaceful and quiet. And I was alone, for the first time in a long time. And I took a long hot bath with no interruptions. It was heaven.

Youba called from the airport right before they were boarding, and let me know that Sabou dragged that carry-on all through the airport, refusing help from all the airport workers. I just love her. And they were on their way.

12/29/11 Ė Family in Mali, Parents in Bronx and Still Coughing

I heard from Youba that they had safely arrived in Mali. Sabou was great on the plane, and slept all the way to Paris. Thank goodness for midnight flights. She had her own seat on the plane for her first time, and I think that helped a lot as well. Youba called as they were getting settled and unpacking in our house in Moribabougou. I am sure that Sabou was lots of help with the unpacking. And her adventure begins.

After work, my parents arrived for the weekend. They wanted to do New Years in NYC with me, so I wouldnít be alone and so theyíd be here for those first few phone calls and emails from Mali.

Thursday night we headed out to the Hard Rock Cafť at Yankee Stadium, my staple for out of town guests. It was my first time there not needing a high chair. Wow, what a difference. No tantrums or anyone trying to climb out of her high chair. Dad did try to get on the field, but security nipped that in the bud.

Now that the baby is gone, I am willing to try the cough medicine that my doctor gave me back when I was sick in October. Iím afraid to take these strong medicines when Iím responsible for my daughter. Wow, did it make me feel out of it.

12/30/11 Ė New Yearís Eve Eve

At work, I was not quite myself, because of the cough medicine, and I made a decision to stop taking it. There has got to be another way.

They let us go home early from work, which was awesome. I couldnít wait to leave because this annoying cough is just not going away.

For my parents, it was out to the Bronx version of Little Italy tonight. We enjoyed a lovely meal and came home early.

When we got home, we heard from Youba that Sabou slept until noon, so he got some rest. His cousins gave her a pigeon that she loves chasing around the house and the yard. He also reports that she is loving playing in her sandbox. Sounds like a fabulous time for everyone.

12/31/11 Ė New Yearís Eve

Today we went shopping, for food for tonightís meal, that my Dad has graciously offered to cook, and for a bed for Sabou. I am determined to make her room so special so that she is actually happy to be home. I think it will be a very hard transition for her to go from the total freedom of a kidís life in Mali, playing and running outside with lots of cousins, chasing birds, and the like, to her limited urban lifestyle, mostly in the living room with Mama and no other kids to play with, no freedom to roam outside, no place to play. I picked out an awesome mattress for her, and canít wait to set it up.

A friend joined us for dinner and together we watched the ball in Times Square go down from the warmth and comfort of my living room.

The first photos arrived from Mali today as well. Sabou is having a great time, playing in the sand, chasing the birds and playing with her cousins. Photos also arrived of our second home that Youba is building in Mali for us. Just beautiful.

I am so glad to see 2011 end and I am feeling hopeful for 2012. Happy New Year!

1/1/12 Ė PAIN

Well, I rung in and woke up in the new year with this intense ring of pain from my stomach to my front. It was hard to move, hard to sit, and hard to lie down. It sucks, and my spirit just dropped. All that hope from last night, like, gone, sucked right out of me. Lupus is here to stay and she slapped me in the face, or in this case, gut to remind me. OUCH.

We had a wonderful day planned, St. Patrickís cathedral for Sunday mass for my parents, and of course the Rockefeller Plaza tree. Well, we just took it slow. I got my meds, my breakfast, and we just waited it out, like I usually do. These pains seem to come and go with me during the course of a day.

So, when it subsided enough for my liking, we hit the subway. Not easy, but doable. We made it downtown in time for the noon mass, which was just perfect. Not easy for me, but my parents were awesome. They could see my discomfort, and after a quick walk by the nativity, we were out of there and headed for the subway back home. Dad, with his a-fib, and me with my stupid Lupus, had to stop a few times along the way to the subway, and the crowds, well they just had to deal with it. We stopped for a NYC pretzel, it was the least I could do, and took the elevator down to the subway.

What I appreciated most about this day was the gratitude I felt from my parents. They were so grateful that I was willing to get them to St. Pats even though it would have been much easier to just stay home.

Luckily with two meals out and the fabulous meal that Dad prepared last night, we have so many leftovers that today can just be sent relaxing in the apartment.

1/2/12 Ė Alone Time at Last

My parents left this morning, and I was finally, completely alone. Wow. What an awesome feeling. It was quiet and peaceful and I was free to do whatever I wanted, or nothing at all. Despite the ongoing annoying cough, I was determined to make a day of it. I went shopping to order the mattress and look for cool bedding for her new bed.

I had planned to go to Jersey City, one of the most favorite places I have ever lived, and meet two friends there for an early dinner. I was questioning whether to do it or not, but since itís impossible to go there with Sabou, because itís too far to drive and because the public transportation is not good enough for me to be able to handle her and the stroller, I decided to go anyway. It felt so good, not physically, but definitely emotionally. I love that town. I know my way around, unlike the overwhelming size of NYC, I can navigate it easily.

So, I went to the mall, found these adorable Dora pillow cases and a nice pink quilt and the bed will be great. And then it was off to my favorite Indian restaurant in Jersey City with some great friends. It felt good to be social and normal, between coughs, and I am so glad I went. I felt really accomplished.

When I got home, more news from Youba. He ordered a rug from Mauritania, which has already arrived, and beautiful living room furniture in a Moroccan style, which is scheduled to arrive at the end of the week. I am dying for photos and I feel so loved. Now, I can only hope that someday I have the health necessary to make that trip myself to see the living room in person and not just rely on photos. He also sent along two adorable photos of Sabou pounding what looks like garlic or onions in the mortar and pestle. She loves to help and wants to be involved in whatever is going on. I love her spirit and she is now officially my hero.

1/3/12 Ė Still Coughing and Canít Take it Anymore

So, today, Iím still hoarse and Iím still coughing. I can no longer justify sitting at work hacking up a storm next to immune-deficient co-workers. I decide that itís time to go to the doctor. Well, mine is on vacation, so I get an appointment with his partner. I leave work early because by the afternoon, I wasnít just coughing, but I really felt only about half present, and was completely incapable of concentrating. I probably did too much the day before, for real.

When I get to the doctor they inform me that he doesnít take my insurance. Iím like, WHAT? They didnít tell me that on the phone. They agree to see me anyway, with just my co-pay.

The doctor seems great and is very knowledgeable about Lupus. He is also very concerned for me and takes a lung x-ray right away. It is hazy and when he listens to my lungs he can hear noises. I tell him about the cough medicine and that I donít want anything that makes me feel like that. He puts me on the Z-Pac and a Symbicort inhaler. He wants me home from work the rest of the week and schedules a follow-up appointment for Friday. I have no sick time, but I will comply with this request. Today was not a good day.

1/4/12 Ė First Day Alone

They delivered the mattress today, since I was home, I figured why wait until Saturday. Itís beautiful and inspired me to make her room beautiful, which I did and proceeded to crash for a three-hour nap.

I am still loving being alone in the quiet of this apartment. Itís been a long time.

Sabou and Youba took their long six-hour bus ride to Sikasso yesterday, and according to Youba, she was great in the bus. She rides buses in NYC with me, so she is kind of used to the idea. What a trooper. Today she helped her aunties do the laundry and Youba will be sending photos soon. She is still and ever my hero.

1/5/12 Ė Second Day Alone and Still Loving It

The photos arrived of Sabou doing the laundry and they are just adorable. I am just chilling out at home, coughing, watching cable, napping, and in between, purging my apartment of clutter, which feels awesome.

1/6/12 Ė Plans Change

So, ironically, this was supposed to be my time, time for me, time to go out to dinner, and to a spa, and check out Queens, and see movies, and get my hair done, my nails done, and have a three day weekend in Buffalo, and just enjoy the freedom to do so, and well, as you know, Lupus has other plans.

I head back to the doctor this morning only to learn that my cough, while it has improved somewhat, has not responded to the Z-Pac as it should, and Iíve now been diagnosed with viral pneumonia. The doctor has given me a prescription for Singulair, which is one of the medicines that Youba takes for asthma, and if Iím not better by Monday, he prescribed Avelox, a stronger rendition of Z-Pac, I guess.

So, now itís time to contact all the people that I have plans with and make the needed changes. No more home organizer. No more spa. No more trip to Queens. I need to just stay home right now and heal. The irony gets me.

Well, as luck, and/or the US health care system would have it, of course, my insurance does not cover Singulair. I should have remembered this because Youba always has a hard time filling his prescription. When I ask the pharmacy how much it costs, well, the answer is like $200. Uh, no, not happening. I call the doctor. There is nothing he can do. I go home to see if Youba has any. Yes, he does! I call Youba and ask him if itís OK to take his Singulair, what other choice do I have? He is not happy that itís pneumonia and tells me to take the medicine. He also shares with me that there are some photos of me in the camera and he showed them to Sabou. She got extremely upset and started crying for Mama. So, we have decided not to do Skype at this time and will not be pushing her to talk to me by phone. Out of sight, out of mind is probably the safest way to go.

Sabou is also starting to use some Bambara words when she yells at the sheep and goats to get them back into their yard. Sheís so smart.

The first thing that I notice about these meds is that they make me shake, and I donít like that, especially since I have had those hand tremors before, but these seem to definitely be caused by the medicine and they do subside on their own.

1/7/11 Ė This is Starting to Get to Me

OK, now Iím just getting fed up. This whole situation is starting to bother me and I am losing hope for a positive 2012. Iím still coughing. Iím still home. And while I am loving this alone time in my apartment, I find myself getting really pissed off at Lupus. Itís like, what? I canít even get a cough anymore without it getting all blown out of proportion, into like pneumonia? I just keep thinking that this is going to be a tough year for me physically and there is nothing I can do to avoid it nor prevent it, I just need to suck it up, which sometimes I just donít feel Iím up to that challenge.

A friend I havenít seen in a long time calls me and wants to get together. She asks the dreaded question, ďHow are you?Ē and I just lose it on the phone. Iím crying, Iím like this sucks, etc. And I hate being like that. Itís not who I want to be, nor who she remembers me being when we worked together so many years ago.

She decides to come and hang out tomorrow and weíll share a breakfast. I offer her use of my car. One thing that this time alone has really allowed me to do is to find ways that I can still serve people from my home, at my computer, in my PJs.

This time at home has really allowed me to focus on my volunteer work for AVP, and my on-line support groups. And I have to say that it has really been fulfilling. I am amazed at what I have been able to accomplish from home, and how much it fills me. Iím beginning to feel a sense of community, even if virtual, and that means everything to me.

For example, offering to send voluminizing shampoo to a Lupie who canít buy it where she lives, designing a flyer for an AVP workshop, offering support on chat to fellow support group members, catching up with friends all over the world on Facebook. All these things make me feel useful, even in my PJs, with my down mood and pissed off at Lupus attitude.

1/8/12 Ė Extreme Makeover Home Edition

Iíve spent most of today in front of the TVís HGTV, getting inspired to fix my apartment, Extreme Clutter, to remind myself that Iím not that bad, and Extreme Makeover Home Edition, because I just love that show, and have my own real estate dreams, that are most likely impossible here in NYC.

Well, itís the Extreme Makeover shows that get me the most. They are always about these inspiring people who despite all of their challenges, etc, go on to live amazing lives with people never hearing them complain or ask for anything, and Iím like, damn, whatís wrong with me? Iím not that bad off and Iím still like having such a hard time, and I know that we canít compare ourselves to anyone else, but really, this Lupus thing has got me in her claws today.

I received more amazing photos of Sabou, in her swimming pool, in her first braids ever, and on her first tricycle. You never saw a happier girl.

Siakaís mom called today too, all thrilled to inform me that Sabou spoke to her on the phone and spoke in French, ďca va?Ē

When I spoke to Youba about it he explained that when people come to visit and they greet Sabou in Bambara and itís obvious that she doesnít understand, they immediately say, ďBonjour, ca va?Ē So, Sabou has started responding with, ďCa va.Ē Sheís so smart.

I am so grateful to Youba for bringing her and giving her this amazing time in her life, and I am so grateful for this time alone to deal with this sickness without having to parent. Itís such a relief to know that there are so many people able to take care of her in a wonderful way and give her a wonderful life if I am ever unable to.

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 January 23, 2012

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