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.

11/22/11 – Fun weekend, Blood Work, and Thanksgiving

So, I’m sitting here, all ready to write the next update, and I see that I left off on November 18, which was a Friday. And for some reason, I have absolutely no recollection of Saturday the 19th. I’d like to tell you what we did, but I really have no idea. Oh yeah, I just remembered!

Sabou slept really late, like till 9:30 I think, and so did I. She was screaming again, “Mama, Sam!” “Mama, Outside!” “Mama, Car!” “Mama, Apple!” So, I called my sister-in-law, the mother of Sam who has become Sabou’s favorite cousin, and asked what they were doing. She said not much but playing outside. I told her how much Sabou really enjoyed last weekend with Sam and being outside and taking the car ride and eating all those apples. She said we were more than welcome.

Well, it’s now like 12:30pm, and we aren’t budging. She is quietly playing with her toys in the living room, and is showing no signs of cabin fever, and I am just enjoying relaxing and watching her from the couch. The phone rings. It’s my sister-in-law. Now her kids are like, “Mom, when is Sabou coming?” “Mom, where is Sabou?” So, I got the fire under my butt and got us moving. It’s quite easy to motivate Sabou to leave the apartment if you say the key words like Sam, Outside, Bye Bye, Car and Apple.

And again, Sabou had a great day, playing with the boys, playing outside, and eating apples, of course. I was totally exhausted by like 4pm, and passed out on her couch. She watched the kids for about an hour and then woke me up, reminding me that I had planned with Youba to be home by six to go to the mall. Thank goodness, because who knows how long I would have slept.

So, yes, Youba and I did have plans to go to the mall, because we are having more computer problems. Sigh. Now the SD Memory card can’t be read by any of the computers that we had them work on. So, it’s back to Geek Squad. They inform me that the disk is bad, but the computers are fine. Then they said that the disk is fine, because one of the computers can read it. Youba has absolutely no trust in their skills at all, and he constantly wonders why I went there in the first place. They also informed me that my computer has a virus. So, it’s another $100 for them to back up the data AGAIN, so they can rid the computer of the virus. Well, we decided to go the self-back-up option to save the money and bought a big memory disk, which of course come to find out is still not enough for all the files on my computer, and we are still at square one, and probably the $100 would have saved us money anyway. Live and learn.

Then Sunday morning, Sabou and I were off to the Javits Center for the Meet the Breeds. It’s put on by the American Kennel Club and allows the opportunity meet the dogs and cats and the many breeds of the dog and cat shows. It was adorable. Sabou is not really an animal lover, but she did really well, and got comfortable to pet at least the toy dogs at the end of the day. But the real fun for her was folding and unfolding chairs, eating popcorn, and of course pushing the stroller around. Going in the morning was an awesome way to avoid the crowds. As we were getting ready to leave about 12:30, I noticed the crowds just growing and growing.

I was surprised how much I enjoyed it, and definitely will plan to go back next year. And I got to see a friend who I have not seen in months. Sabou and her little girl got to hang out, well as much as kids do at that age, and me and my friend got to catch up. That was awesome. I’m so glad it worked out.

When we got home, another friend that I have had a horrible time keeping plans with, came over with her two kids, and again, another fabulous time. It’s just nice to see Sabou interact and play with the kids, and to have people over, no matter the housework situation, and just chill out and chat. We got pizza, may as well keep it easy. And Youba surprised me by being home. It was a great day and a great weekend.

On Monday morning, I was scheduled for my blood work appointment for the Lupus Genetic study. Well, when I got to LabCorp, they simply told me that they don’t do business with the company doing the research and told me to go somewhere else. I was shocked, I mean the company had set up the appointment. So, instead of going anywhere else, I just went to work, disappointed. I reached out to the researchers so they knew what was going on. They immediately got back to me to tell me that they had rectified the situation and that I could return to LabCorp on Tuesday.

At work, one thing I noticed was that the dry cough/scratchy throat is just not going away. I need to constantly drink water to calm the frog in my throat, and I am popping cough drops constantly at my desk. I have no idea what this is, maybe just the dry air in the work building? But I am watching it and taking note. Another thing I noticed today is that when I’ve been sitting for a while, it’s hard to walk when I stand up. There is a moment of pain and a few steps of limping until I get back in the swing. Nuisance is the word that best describes.

And Thanksgiving is quickly approaching, and I am so not ready. Christmas is going to come quickly as well, as is the trip to Mali, and I feel so unprepared. The things I need to do are to go food shopping for the items I volunteered to bring to Thanksgiving dinner at my sister’s; cook and bake; make a list of everything I want to buy for Christmas for Youba and Sabou, which will mostly be the things that they will need for their big trip, and go shopping for them. Also, there are the ongoing mundane things that are never up to date – you know, laundry, dishes, housework, etc.

Lately I am finding that it is impossible to keep up with everything with a full-time job and an hour commute each way. It’s like, by the time I get home, and prepare her dinner, eat, and get her ready for bed, and then get her to bed and asleep, I am done. Just completely done, and all the other stuff goes undone. I don’t know how people do it, I just know they do and I know that it is extremely exhausting.

I was able to get the blood work done at LabCorp today, and the receptionist apologized to me. They took a lot of vials. The phlebotomist asked if I was donating blood. I explained about the Lupus genetics study to him, and made it to work on time.

Youba then called to tell me that he had to go to school today and can’t pick up Sabou, WHAT? Like you need to tell me ahead of time. If I miss a therapy appointment, he charges me $75. So, I told Youba to go to day care and tell them that I’ll be late. He also offered to take Sabou home and bring her back later, but Sabou would have none of that. She was already happy and playing with her friends. And the day care provider was fine with keeping Sabou late. I don’t know what I would do without this day care center, for real. I tried to offer more money for keeping her later, but she wouldn’t hear of it and put the money back in my purse. I will definitely give them a BIG gift this year at Christmas.

And at therapy, I really didn’t have anything to say, as there’s not much going on, so it didn’t last quite as long as I expected and I wasn’t all that late to day care anyway. Somehow things do work out.

But then, when we got home, Sabou was just lethargic in my arms, sitting in my lap. She’s got 100.5 fever. And Thanksgiving and everything goes on hold. I just can’t imagine taking MORE time off of work. I don’t know how parents do this and do it well? Youba is already watching her on Friday because day care is closed, and for some reason the government offices are open (WHAT?). Depending on how she’s feeling tomorrow, he may have to watch her tomorrow as well. I can’t miss tomorrow. It’s full of meetings about important stuff all day. And here we go.

11/25/11 – Maybe Next Year

So, I did go to work on Wednesday, and Youba stayed home with Sabou. There was already a doctor’s appointment planned for her anyway, with the intent of getting her Anti-Malaria prescription for the big trip, so I asked Youba to take her to it and definitely have the doctor look at her. Now, he’s never done anything like this before; never taken her anywhere alone except to small stores down our block. A huge step for him.

When I got home from work, they also had just arrived home from the doctor. Sabou has an ear infection. The doctor sent her prescription to CVS, and I went to go pick it up. Between waiting for buses, and the normal hour plus wait at the pharmacy, I must have been gone like 2 hours. But, at least the brain worked well enough to remember that I also need to refill the Prednisone. I never want a repeat of the Plaquenil mess up.

So, early on Wednesday morning, I sent an email to my sister saying that we are just not coming. I mean, it’s just too complicated. Youba didn’t sleep Tuesday night, because he worked. Then he didn’t sleep on Wednesday because he was home with Sabou. If we went to my sister’s for Thanksgiving, he’d be the driver and then he’d have to be social all day, and then drive us home afterwards in time for him to get to work, so that after not sleeping Tuesday night, Wednesday day and Wednesday night, he’d also not sleep Thursday day or Thursday night, which then leads into Friday, the day when he has to stay home with Sabou again, because, of course, day care is closed, and government is open. Now, Friday night is his night off, so he will be able sleep Friday night, but it just seems like too much to ask of anyone really.

So, Youba slept through Thanksgiving, and Sabou and I made the best of it, or at least tried to anyway. She was feeling better, and probably would have LOVED having Thanksgiving with her cousins, but there was just no way. We did a little food shopping, she helped me do dishes and bake peanut butter cookies, and in between her frustrations and tantrums, as well as mine, being cooped up in one room all day, I guess it was an OK day.

Talking to my folks on the phone and hearing all the fun they had made me wish that Sabou could have been there, running through the yard and playing with all of them, but really, I can’t drive that far, and I can’t ask Youba to do it, and probably it was just best to keep her home another day anyway. Maybe we’ll make it to Thanksgiving next year.

When she did finally go to sleep, Youba and I had time to chill out before he went to work. I think it began to sink in that we won’t see each other for three weeks when he goes to Mali. He said, “You want to come?” Of course I want to come. I just can’t. Between my crazy unpredictable illness, the HOT sun over there that could cause it to flare, the thousands of miles away from my doctors, and the fact that I am already in negative time off at work, and it’s only getting worse in December, like, no, just not now. “Maybe next year,” was my answer. I guess that’s my theme today.

11/25/11 – Feeling Those Old Familiar Pains

So I made it through work today, there was next to no one there, so it was easy to concentrate and get things done. When I got home, Youba and Sabou were sleeping. When they awoke, Youba told me that around noontime, Sabou started having fever again. He handed her to me and she was like SO hot. I took the temp and it was 102 degrees. We gave her Tylenol and called the doctor. He said that it can take 48–72 hours before the antibiotics really start working, so that the fever may come and go, and that when it was does, to just keep giving her the Tylenol to keep it down. Poor baby. It made me very grateful not to have any plans this weekend.

Then somewhere during the evening, I started to notice it, those random pains all over my body: back, right knee, right foot. I fell asleep with Sabou around 9pm. Just woke up and the hands feel all tingly and the pain remains mostly in the back now, but sometimes the feet and sometimes the head. Damn. I hope this isn’t a sign of more to come.

11/26/11 – Lost it.

Still achy and feeling the pain move randomly across my body. It sucks. And it scares me because I never want to go back to the place I was when this all started. So, no, I didn’t wake up in the best place. But, it’s Saturday, and a weekend when Youba doesn’t have to go to school, so I’m trying to be hopeful. We have a slow relaxed morning in between Sabou’s timeouts for all of her tantrums and antics. And between each one I am resting myself on the couch as the head doesn’t feel screwed on right, and the pain is moving. It sucks. It just sucks. I mean it’s this gorgeous day. I’ve already missed Thanksgiving. I haven’t been able to get the laundry dropped off in days now, and it’s just down the street, because every time I’m ready to leave the apartment, Sabou starts screaming, and Youba prefers that I don’t go.

Well, we’re dressed, both me and Sabou, ready for I don’t know what, I’m hoping for Christmas shopping and trip to Mali shopping. Then out of the blue, Youba exclaims that he’s going downtown. I say, “Oh why don’t we go with you?” No, that was not in his plans. And he just got up and left. And I just lost it.

Was it anger, frustration, sadness, the pain, the fear of the pain, the complete loss of freedom that he does not experience at all? He can just leave, walk out the door and think nothing of it, because he knows that Sabou will be taken care of, yes, by me. I mean, I can’t even get to the Laundromat a block away, and he can just, you know, leave at any time, on his own time, and come back whenever. And I remember living like that. I remember when my time was my time and I could do whatever I want when I want and no questions asked. And I remember feeling healthy enough that nothing took a second thought. Well, I couldn’t hold in any of my emotions anymore, and I just lost it.

I don’t know how long I cried for. I kept trying to stop. Sabou joined me on the couch and rubbed my back, just like I do for her to calm her down. She is an amazing girl. Not knowing what to do with myself, and wanting to escape from that apartment so bad, just get in the car and drive, get the girl out of the house and go somewhere, and then reality hits. Really? And where would I drive? And would my body behave? Would my vision behave? And I gave in and together, me and Sabou cleaned the damn apartment.

She was so helpful. We did dishes, picked up all of her toys, and vacuumed. Slowly, we cleaned, with lots of breaks that I needed on the couch, and slowly, I calmed down.

Youba came home about 2.5 hours later, and by that point I was over whatever the freak attack was about. And we packed up the family and hit the mall down the street. We made some headway on the Mali trip items, but not so many on the Christmas list. That’s not a priority for Youba, not like Mali is. But it is for me. I told him that I would like time before they leave for Mali to get to the mall without Sabou. Hopefully that can happen. See, I have to plan ahead of time, let him know ahead of time that I’m thinking about it. Someday, I just want to wake up, get showered, and exclaim to him, without explanation, that I need to go downtown and leave just like that, no questions asked. Why can’t I?

In the store, I could feel the pains, randomly moving around my body; sometimes limping, sometimes not, but still and ever there. It was bothersome, which never helps my frustration level, and then it happened. Sabou was hanging out with Daddy and I thought the three of us were heading for the shoe department. Youba called me, saying, “Here comes Sabou.” And there she was running towards me, when she got to me, I looked again, and he was gone, just gone, and this is in a crowded Target. And when she realized he was gone, she lost it, and now she’s screaming for Dada, refusing to get in the shopping cart, and crying like there’s no tomorrow. And that anger pang, yeah, it hit again. But now I’m in a public place. I can’t jump on my bed and hide my head in my pillow and cry. So suck it up and hit the shoes.

We find an adorable pair of summer shoes for Sabou to have in Mali. And she’s screaming “shoe,” which she does all the time, so I don’t think anything of it. Well, it did mean something. She has thrown her sneakers out of the carriage, and by the time I realize it, I can only find one. Now, she has no shoes to wear except the ones that are supposed to be for Mali, and yes, I am really pissed off now. I look everywhere for the damn shoe in that store, with no luck. Limping periodically and pushing that cart through the store. So, it’s back to the shoe aisle to buy her another pair of sneakers that she shouldn’t even need right now. What can I say; I guess the holiday season has officially started.

Well, I finally did get to drop off the laundry at some point today when Youba came home, and they did it really fast, so tonight I went to pick it up. It was such a beautiful evening, that when I came home I offered to take Sabou out for a walk to the local stores, still hoping for some good shopping finds. Youba called at some point, and decided to join us, which never happens, and there we were walking through our own neighborhood, our local vendors, as a family. I don’t think that’s ever happened before, and you know, it just felt good.

Tomorrow, a friend is coming over just to hang out. And, I’m thinking to see if she has any interest in getting out of the city, going for a drive to somewhere, if the weather is as nice as it was today. I just need to get away, and I can’t do it alone. Youba’s already told me that he’ll be at school, so yes, no surprise, whatever we do, wherever we go, if anywhere, Sabou will be with us.

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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