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.
10/30/11 Ė An Awesome Day followed by Hurtful Comments
So, yesterday was an awesome day. I got together with a friend and her family, after about five years. We got to meet each otherís kids for the first time, and reflect on how entirely different our lives are now. Sheís got three kids Ė one and a set of twins. And I was completely impressed by her and her husband and how they navigate that. And I was also so thankful that I only have Sabou. She is more than enough, and sometimes more than I can handle anyway.
We went to the Childrenís Museum of Manhattan, where Sabou and I had celebrated Curious Georgeís birthday back in September. Sabou had fun coloring, playing with glue, and climbing on everything, driving things, playing with the blocks and the balls, feeding the alphabet eating dragon all the different letters, etc. etc. My friendís twins are 18 months, which was also perfect. It was like we could completely understand each otherís frustrations and exhaustion. Sabou had her temper tantrums in the morning, before lunch, and one of the twins had one in the afternoon, after lunch. And we just both sat through each one with complete understanding. While it was a very exhausting day, because remember it snowed this wet slushy disgusting snow in NYC yesterday, yeah, you try pushing a stroller in that ugly wet slushy snow the many blocks it takes to get to the subway station, it was so completely worth it to me.
And a revelation Ė she explained to me that she lives just over the border, just over the George Washington Bridge in NJ, and as long as there is no traffic, she can get to Manhattan in like 20 minutes. Yeah, and Bronx is much closer to her than that, especially since I live like five minutes from the bridge. I was so excited. I told her I can drive that far. Thatís closer than my brothers. She said she can also meet me in NYC if that is easier. Wow. It was just an awesome discovery, and I felt successful in increasing my mom support by one family, which is already huge.
Then, when I got home from this awesome but exhausting day, I mean Sabou and I left at 9am and didnít get home until 5pm, the fatigue completely wiped me out. I couldnít function and just needed to sleep to recuperate. Well, the phone rang, and I should have just let it go. But, I didnít. The person could hear the fatigue and frustration in my voice. When I am in that state, all I can do is complain about needing to go to sleep. I hate the person I become, but itís just what happens. There are people who donít like to hear me be any less than 100 percent cheerful and happy all the time, and sometimes, life just isnít like that for me. His reaction to my day was stating, ďOh, youíre not in a talking mood.Ē I was upset. I had just explained to him the incredibly busy day I had and that now I am tired. He followed that by saying, ďYour husband must be getting tired of you not being able to take care of your child. I know I would be.Ē And in that moment, I had no more words to say. Some were trying to formulate in my Lupus brain, but it all was too complicated, all too repetitive since I had just described my day to him. So, I just hung up. The phone rang a few more times during the course of the evening, and I simply ignored it.
You see, I had been Ďtaking care ofí my child all day, on my own, as always. She had an awesome day. And it makes me so mad when people donít get that. So, I did pass out on the couch, and my husband, who is supposedly Ďgetting tired ofí it all, supported me by watching Sabou and feeding her dinner while I slept. I woke about two hours later completely refreshed, but when that fatigue hits, I really need to take care of myself, because I am completely unable, in that moment, to care for anyone else.
I know that the hurtful comments are a very real part of every Loopieís experience, and I just want to say to the world, whoever is out there, reading this, whoever is not living with Lupus, please be kind. Donít judge what you donít understand. And always remember you are blessed that you donít deal with the s#!t that we do on a daily basis.
Oh yeah, and an update on tomorrowís trip to Jersey City Ė cancelled, yet again. It seems that between me, my friend in Jersey City and my friend in Long Island, we just canít get it together. I am sure we will, since none of us is giving up, but just not yet.
Yes, my friendís baby is starting to get sick. Well, I learned from the visit with Sabouís cousin two weekends ago. She had been fighting off something, but was tired of us always having to reschedule, as was I, and the girls had an awesome time together as did we, just sharing about the trials and joys of parenting, and it turned out that she was sicker than she thought, and remember I caught that cold and missed days of work. I have learned my limits around sickness, and know now that I can just not chance it anymore.
So, my friend who was planning on driving me will come here for a visit, so I donít have to go anywhere, and she doesnít have to drive in the wet snowy slushy roads, and then Iíll bring the girl to trick or treat at the Museum of Natural History. Sheís never been there, so Iíll be interested to see her reaction. I have also invited Youba to come, which would be really fun, but it depends on his schedule with studying and all that. But yes, damn it, Halloween will happen for this girl!
10/31/11 Ė A Halloween Story with Lupus Brain
So, we all slept late, which was awesome, and then my friend who had originally planned on driving us to New Jersey came over to hang out, before I headed out to Plan B, and the Natural History Museum. The girl was all decked out looking adorable as Curious George, and off we went. I had help with the stroller in the subway thanks to my friend, and we made it there with no problems.
Unfortunately, you know, Lupus brain, and of course the event is not today. The event is on Monday from 4:00–7:00, I guess so that one-income families can go and partake, but for those of us who work, yeah, not happening. So, now what? I never thought about a Plan C.
No worries. My friend brought us to a kid Halloween party at her place of employment, thank goodness for friends, so Sabou got to hang out with other kids, play with toys, get some treats, and have a few tantrums along the way. Hey, at least she got something.
When I got home, Youba informed me that heís leaving home tomorrow at 6pm, yes, on a Monday, on one of the few days that heís actually home at all. Dissappointed? Yes. Heíll miss Halloween, and I guess it doesnít really matter. My only plan at this point is to get her dressed in the costume when I return from work, and take her to the stores down the street, where the merchants know her. Itís small, itís do-able, and I think it will be adorable.
11/1/11 Ė Happy Halloween!
OK, Iíve learned. Itís much easier to just take the simple road. Today after work, Sabou got dressed in her cute little costume Ė again, and we simply walked down the street to all of the stores and vendors that were giving out candy. And it was awesome. The street was packed with kids of all ages dressed in their Halloween best, and the store owners were all out and giving away candy. The ones that know us well Ė hardware, dry cleaning, and pizzeria, gave her like tons of candy. She took the crowds and the costumes in stride and just got in there, pushing her way through the lines of kids to make sure that she got candy too. It was so much fun. Everyone was commenting on the adorable little Curious George, and I think us adults were laughing as much as the kids. So glad I did this year in my neighborhood instead of driving out to the suburbs and chancing another broken ankle, like last year. Yes, Halloween is awesome in the ghetto too!
I also paced myself all day. By lunch time, I had been on so many subways and subway stairs, that I just knew I couldnít walk far to get some lunch, and then do the hill with the girl for Trick or Treats, so a co-worker went off and brought me lunch back. So nice.
11/3/11 Ė Same Old Same Old
Not much to say. The days have become routine, get up, get ready, get her up, get her ready, eat, head to daycare, head to work, work, go get her from daycare, then eat and go to bed, and do it again. Sometimes itís hard to get motivated each morning to do it again, but then you realize that right now itís a must. Iím always happy to get her to daycare, knowing sheíll be playing with friends all day, and happy to get to work where I can feel adult and productive, itís just that the mornings have become my hard to motivate time.
Not much Lupus to talk about. Since a fellow on-line support group member mentioned the word remission to me, sheís got me wondering if this is remission. I canít remember a day that Iíve experienced a lot of pain in a long time. Well, we go back to the doctor at the end of the month, and that blood work will tell the story I guess.
11/5/11 Ė Hanging out with another Mommy
So today I had the joy of attending a meeting of a group I used to be very involved with in my past life: The Alternatives to Violence Project (AVP) through which I used to conduct nonviolent conflict resolution workshops in prisons, schools, communities, and in the Congo and Rwanda. Iíve been absent from that group for a while now, since doctoral school, the baby, the new job, the new diagnosis, and it was wonderful just to reconnect with folks. They had a babysitter set up, so I had time to catch up with people without running around after Sabou.
Then another Mom showed up with her seven year old, and we were able to get the kids outside to a huge beautiful park right along the Hudson River, just gorgeous, and we got to talk mommy stuff Ė the everyday frustrations, and joys and all of it. It was awesome.
And truth be told, Sabou and I both walked a quarter mile track. I havenít attempted something like that since diagnosis, and probably a long time prior. It felt good and I felt successful. Sabou crashed for like a three-hour nap, which was also a joy. I think I need to get her out on to tracks more often, and it probably canít be bad for me either.
11/6/11 Ė Another Beautiful Day at the Bronx Zoo
So today was the long awaited family trip to the Bronx Zoo with the cousin I found at my uncleís wake in August who is also living with Lupus. It was amazing. My sister, my mom, my sisterís kids and one brother came. My cousin came with her kids and one of her brothers. I mean we are deep in our 30s and 40s and this was the first time we have hung out since we were like, oh, I donít know, eight years old. It was a great day. The weather was perfect. Her kids are big, so the stress of all the little ones running around didnít exist. The only little was Sabou. And she had a great time. The cutest moment was when she grabbed the hand of my cousinís daughter and they walked through the zoo together. I didnít get tired, and I was able to keep up with the group. And since these cousins donít live too far into Connecticut, we are going to try to do this kind of get-together again. And I just have to report, that not once, not even once, did the subject of Lupus come up. I didnít even realize it until later that evening, probably during Sabouís four-hour nap. Yes, I have a feeling that the best thing for this girl is just to keep her extremely active and busy. And probably me too, distracted from disease.
11/7/11 Ė Lupus Studies and A Day for Me
Thereís big Lupus news today. I have been accepted into two Lupus research studies. One is focused on Discoid Cutaneous (Skin) Lupus, and one is looking at genetic factors hoping to find the cause of Lupus.
Yes, more irony in my life. After years of studying quantitative and qualitative analysis, and learning how to conduct research studies at the doctoral level, here I am signing up to be a subject in studies that others are conducting.
I wasnít sure that the skin study would accept me, because while the primary care physician and the original rheumatologist agreed that the rash was definitely discoid Lupus, the dermatologist insisted that it was NOT Lupus and diagnosed it as Actinic Keratosis. I am thrilled that they saw through the misdiagnosis and accepted me into the study.
The other one is the National Lupus Patient Directory. They are collecting blood work from people living with Lupus and their family members, who do not have Lupus, trying to get a sense of the genetic make-up of Lupus and a possible cause which could lead to a possible treatment/cure? We got to hope.
Then thereís the excitement about tomorrow. I have a day off of work. My mammogram got canceled. Daycare is open. Itís Tuesday, so Youba picks up Sabou from daycare, and somehow, I have the entire day to myself, to do whatever I want. I canít believe it. And while there are many tasks that I probably SHOULD do, you know like dishes, laundry, and housecleaning, especially with the baby not around and Youba off to school, Iím thinking itís time for a day for me. I mean a movie, popcorn, and a really nice lunch Ė out. I havenít seen a movie in three years, probably, unless you count Cars 2 with my six-year-old nephew. Iím so excited, I canít even sleep.
As for remission, I still think so. When I return to the doctor at the end of the month, Iíll ask him to do blood work so we can see. I say that, and then today at work all morning, I had the blurry vision and had trouble reading documents. But who knows, maybe thatís the onset of Glaucoma and not Lupus related. I have no idea, but Iím going back to the eye doctor next Monday to see (no pun intended).
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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