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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.

10/15/11 – Pushing limits that I didn’t know I had, and learning to stop

Another pretty uneventful week, I’d say, until Friday. In my past life, you know prior to diagnosis, I traveled around the country and around the world speaking at various events, everything from short presentations to full-day workshops. Well, last year, before I was diagnosed, I accepted a speaking gig at a university, like with no reservation. The day of the conference finally came on Friday.

So, on Friday I had to go to the train station, where I found out that the trains were running an hour late. Yes, I start the morning with one hour of standing. Not a good thing for me. This was followed by the hour long train ride, which just didn’t help, then waiting for my friend to pick me up, which meant more standing. By the time I got to the conference, I was really like, why am I doing this? What for? Luckily I was able to have a wonderful lunch with former colleagues before heading to the conference, and that took the edge off.

Once at the conference, it was like I just wasn’t into it anymore. I wished I had just gone to work and was sitting at my cubicle. This workshop meant yet another 2 hours that I’d be standing today. Sigh.

And, as is always the case, the participants loved it, and I am not biased. J People were coming up, as they always used to, asking for a card, can you come and speak to my organization, to my staff, to my clients? And while in the past this would have totally invigorated me, made me feel special, yada yada, today I was just like, silently in my mind, uh, no.

And I made another milestone in my life, post diagnosis – I went up to the conference organizer, who calls me periodically to present, and asked her not to call me anymore. I just can’t handle it. There is still one more training that I have scheduled through them, in December. I am so hoping it gets cancelled, but most likely, it won’t.

Then it was back to the train, for an hour, and then the two subway rides home. I left the house at 8am and didn’t get home until 7pm. And it’s just too much. I called a friend of mine who does very similar workshops to mine, and who has just incorporated. I called her and told her that if any of these participants actually call me for a workshop, I am forwarding them to her. I am handing over this work to her to carry on, because my role is done. I am satisfied with my new position, my new job, my new cubicle desk job, it’s enough. I got home exhausted and spent.

Then on to Saturday, you know the day that I am alone with Sabou all day while Youba goes to school. Well, this time we already had a plan. My nephew’s birthday party, in the suburbs, not too far, so I know I can drive there, followed by a family meeting.

So, we left the house early and headed towards the burbs. It was a lovely fall day, and I have to say that fall is my favorite season, and living in the concrete of South Bronx that I do, it’s hard to get a sense of fall without blowing leaves and changing colors and all that, and it was just great to see the colorful leaves lining the sides of the Hudson River. And I was feeling so strong, no pain, and like I could just keep on driving. So, we did. We drove past my brother’s town and to the town where I grew up. Sabou has never been for a walk in the woods. She’s never seen a deer or had any of the experiences that I had as a child growing up in the burbs. So, we went to a park I haven’t been to in a million years to walk on the trails in the woods. It was awesome and amazing.

I could hear the wind in the trees, and I haven’t heard that sound in a long time. She stepped in mud, sat on rocks, and jumped on logs, and saw a deer, and you never saw a happier girl or a happier mom. It was awesome. This was the kind of day that makes me love parenting. It was probably my first time showing her what my experience was growing up, which is totally different from hers in the big city. She has already seen my husband’s experience growing up in a village in Mali, West Africa, but this was her first time seeing my ‘village’ and what I used to do and love to do as a child.

Then it was off to Micky Dees for a happy meal. And she was awesome in the restaurant. We must have sat there for an hour as she slowly made her way through the meal and decorated the Halloween bucket with the stickers that they provided. People kept coming over to compliment her, how she’s such a good girl, shocked that such a little thing can sit in a chair for that long completely content, and actually eat the food put in front of her. I soaked in all the compliments, and made sure she heard them too.

But, by the time we got to the party, I was DONE, completely done. My legs just felt so weak, my energy low, even holding her on my lap was too much for my legs, never mind actually carrying her. And I was like, what was I thinking? Whatever made me think that I could go hiking, even just the little way that we did? Damn it! Here I was so happy sharing with her this beautiful part of living in the North East USA, and even though I was so incredibly happy and enjoying it so much, now I have these weak legs, and my upper body hurts like the dickens, and the party has not started yet.

Such a reminder of how much Lupus totally sucks.

And I can’t slow down. The little girl is trying to keep up with all the boys, and doing a fantastic job of it. Running everywhere, up and down the jungle gym, getting herself into precarious positions, and needing me to save her, which is fine until she is up so high and my shoulder can’t take the extension it needs to get her down safely. I am sure I screamed from pain at least once while we were playing.

My sister arrived and her first words to me, “You look tired.” Yes, I am sure I do, and I am. I told her about our short lived hike in the woods, and that even though it wasn’t much I guess it was too much. But, you know, you just keep going, and either I just make myself forget about it, or just completely accept it, but you just keep going because that little girl is not going to stop. When we got back inside, I just sat down on couches wherever I could find a seat, until I needed to get up again.

The family meeting followed the party, and was focused on my parents – finances and health. I was so grateful sitting there that this meeting was not about me. :)

10/16/11 – Still Recovering

This morning I woke up at like 4am and just could not get back to sleep; which on one hand is fortunate because the whole house needed to be cleaned, as we were having visitors this afternoon, and on the other hand, it’s not so fortunate because it puts my schedule off for the day, in terms of tiredness etc.

So, after cleaning as much as I could handle, the baby woke up about 8am; we played and prepared for the day and headed out at 10am to do some errands. Sabou was fine to a point, but began to lose it in the second store, and that was it, we headed home. She passed out in the car and slept the whole way.

We got home at like 1pm, and heard from Youba’s cousin’s wife, that they’d be about an hour later than originally expected. I grabbed the opportunity and took a two hour nap. I really needed it. I was not feeling good at all.

After the two hour nap, the pain was actually worse, mostly in my right neck and shoulder. But I did the dishes anyway and the final preparations for their visit.

It was so cool to see Sabou play with her one-year old cousin. They were so cute together and were really able to play together for the first time. Laya’s walking improved dramatically while she was here, probably from watching Sabou and getting inspired. They fought over toys, but really did not do too badly together. It was so cute, and I really wish for more time like this together for them, and for me. It was great to hang out with her Mom and discuss Mommy stuff, work stuff, and the like.

Then, after they left, my head just lost it. My head was in so much pain, like I haven’t had in a long time. I just layed on the couch. I asked Youba to do things for Sabou and he in turn told me to do them. I told him I really don’t feel good, and when that didn’t work, I just went to bed, at like 8pm. It was another two hour nap, and I will tell you that I feel much better. The head, while achy is not excruciating, and I’m doing much better.

So, once again, did I do too much? Because it just didn’t seem like I did a lot of anything. Maybe if you add up the whole weekend together it does. And I need to be more careful.

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 October 17, 2011, at 03:47 PM

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