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.

10/17/11 Ė Nightmare and More Tests in Saying No, or at least, Maybe

Wow, I didnít think it possible, but I had a Lupus nightmare. Two fingers (pinky and ring) on my left hand were getting so swollen that they actually fused together making it look like I only had four fingers. And the pain was incredibly intense. They would come back to normal for a short while, only for the process to happen again and again. Then sometimes instead of the fusing, the ring finger on the left hand would swell up like a balloon from the palm to the tip and turn like a bluish purple. Then it would do the opposite by de-swelling from the tip to the palm, also very painful, and freaky to watch. Yeah, I didnít go back to sleep, and I am proud to report that for today, my fingers look fine and are all working.

But, before going to sleep and having this crazy nightmare, I received an email from an organization requesting that I consider joining their board of directors. Wow, like a dream come true, except for the fiduciary responsibility, of course. And then reality hits again. How many meetings a year? When are they? What about my health? What about child care? How much money will I have to fundraise annually? You get the idea.

I responded putting it all on the table Ė that I have Lupus and life is a little unpredictable. She responded that they are also putting together an Advisory Group that wonít have fiduciary responsibility. And they donít know yet how many meetings a year. Is this a time to just say no? Or is this is a time to give it a try and see how it goes? First things first, and as a government employee, I have to see if thereís any conflict of interest and if the Department will even let me. Then I need to take into consideration my health and my baby. One step at a time.

10/18/11 Ė Health Insurance Options Ė Yay!

OK, to start with, I simply said no to the request to join the Board of Directors. It just seemed easier. I guess Iím getting pretty good at this saying no-thing.

Today, I found out that I am eligible for all kinds of health insurances through work and its credit union. With all the stuff being aired about Bank of America of late, Iím glad to have this option.

And while I was sitting through the seminar, it occurred to me that about a year ago, at my last employer, I was offered very similar policies: long term disability, critical illness, life insurance and the like, and I immediately disregarded them as things that someone like ME would never need.

Fast forward to today and this was probably the most exciting part of the training. I was entranced with the idea of having disability and critical illness policies set up through the credit union that are totally not contingent on my being employed by the employer who made me eligible for the credit union! Like they can lay me off, or I can get really sick and unable to continue working, and itís all OK, because I can set up these policies for myself. I amazed myself at this new person I have become. Almost every disease they listed for Critical Illness is something that I am now at risk for because of my Lupus, and as long as I donít have a stroke, or heart attack, or renal failure (for example) during my first year of employment, then they donít care about the pre-existing condition! I know I can make a year, right? It may sound crazy, but I have never been so excited about buying an insurance policy before! Itís all because of Lupus. My life and its priorities have been turned upside down, completely.

On a physical note, I am not tired. I worked a full day, and came home, played with the baby and put her to bed. Usually I fall asleep before her, and tonight, I just have energy and not many pains, and itís joyful and rare and I am enjoying it greatly.

10/20/11 Ė A random sadness from nowhere

So, Iíve been told to find out if really this insurance I got so excited about really is not dependent on me working. Also, there are similar policies offered by the union, which would definitely be contingent on me working, so Iíll need to weigh my options.

Then, now that Iím a bonafide City employee, I need to use their new timecard system, which consists of a hand scan. Iíve been looking at that machine since I started here, and all the time wondering what about the days when my hands swell to three times their normal size. Will it still recognize me? Clock me in? Will my hand even fit? So today I finally had the chance to ask.

There is an online option to use if the hand scan is not working for any reason, like I canít get my hand inside of it. That was a huge relief. And I find it amazing how I just ask these questions without even thinking about how bizarre they may sound to the people Iím asking them to, because they are completely normal for me and my current life situation.

Now, I had a great day at work, and no pain to speak of, and even so, when I got home, I was just so sad. Nothing set it off, really nothing did, but there I was. I mean even the express train I was on decided to go local, and I didnít have to change trains. Thatís a good NYC day. So, I put on the TV for the little girl, and lost myself in Lupus support groups online. Someone posted a video that was so moving, I just kept crying and crying, and maybe thatís just what I needed, just to let it out, whatever it was. Funny thing, I posted the video on my wall, and someone responded so poignantly like it was my video and my story. Ooops didnít think of that. I think I better explain.

But the video speaks of the Loopieís experience from pain to remission to back to pain. And it just struck a chord deep inside me that oh my God, some day, any day, totally unexpectedly, I could be back in that very painful place, unable to care properly for my daughter again. That reality is very hard to take sometimes, and all the more reason for me to take full advantage of these good days, of which today was one, and not to go to these sad places about a very uncertain future.

I brushed myself off and me and the girl colored, kidded around, laughed, watched her favorite TV shows and went to bed.

When I woke, because itís impossible for me to sleep for more than 3.5 hours at a time, and I canít blame that on Prednisone anymore, since Iím down to 1mg, I went again to my computer, one of my closest friends in these late night early mornings, and found messages sent from a friend regarding others who blog about Lupus. So I checked out some of their blogs and their videos, and was completely inspired. Loopies are all over Twitter. Now, thatís a place Iíve never been, but maybe itís time, I mean hey, I got the Blackberry, right? I actually text now, right?

And thereís another website where I could possibly place this blog. I hope that blogging doesnít have the same rules as academe, and that itís no problem to spread your same words in multiple places. I guess Iíll find out if that website accepts me. And there are conferences for people who blog about living with chronic illnesses. And my reaction to this knowledge surprised me because I just got finished telling one training/conference organizer to stop calling. It was also the same reaction I had at that conference when people came up to me after my workshop requesting my website. My website, like I have one or know how to create one, and I immediately thought of my blog, which is totally not what they were looking for. The topic was on the immigrant and refugee experience and cultural competent practice. And I realized how much my life has transformed. And that my priority now is on my health. So, are such conferences like this where people present on their lives, their blogs a way to bridge who I was and who I am? Itís a very interesting question and Iím yet again intrigued about where my life is heading.

10/22/11 Ė Iím sick.

So, today, I feel sick. Itís my first cold since diagnosis, and I donít know what to expect. Will my body know which bad cells to fight off and which good ones not to? I know I just need to take it easy, and yet, here I am, presenting at a university class this morning, going out to lunch, and as always and ever, parenting the non-stop toddler. And, Iím supposed to be going away this weekend. It was to be a lovely weekend away, in Long Island, where Sabou would have attended two birthday parties, but no, I just canít chance it, not for my own sake, or for the sake of the other people at the parties. It sucks. Here I am again. And maybe Iíll be fine, and this will just be a normal cold. But I have to say that this disease has totally upped my worry factor.

So, Youba went ahead and made his own plans for the weekend, thinking Iíd be away. What does that mean for me? Iíll be parenting again, on my own, again, tomorrow, and most likely I wonít be feeling well either.

I really need to find a support system that can step in and help me. How do I do that? Everyone has their own life, their own problems and their own families. And here I am, just craving help.

10/24/11 Ė Still Sick

So, I called in sick to work. Thatís my first time since this job began. Luckily, because I need to see my doctor so frequently anyway, I have an appointment scheduled for today. I called the office and was able to move my appointment up from 5:30 to 3:30, I know itís not much, but Iíll take it.

So, Iíve spent the whole weekend in the living room, sleeping on the couch. Sabou has been great. Cuddling with me, taking care of herself, you know entertaining herself, since Youba wasnít home yesterday either.

Even though Iím sick, Halloween is still on my mind. My little girl has missed so much because of me, and I am determined to give her a Halloween. Sheís got the cutest costume, and I really want to give her the opportunity to wear it.

So, Iím on the lookout for options. Thereís Jersey City, a cute kiddie parade next Sunday morning. Um, how do I get from Bronx to Jersey City by 10am? Because remember, I need a ride. I wonít do a ride that long on my own. Then thereís a street fair for the kids, also in Jersey City, that afternoon. That seems a little more feasible, again, if I can get someone to drive with me. Iíve reached out to two friends, who may be available and willing. Fingers are crossed. If not that, I found out that Museum of Natural History is doing a trick or treat thing with characters wandering around the museum, you know like Curious George. So, if Jersey City does not pan out, then I can at least get her to the museum on Sunday, and we can walk around the businesses down 167th Street on Monday afternoon.

And thatís the best I can do, and I can only do this if my cold remains a cold and doesnít become some full blown out Lupus flare. This is quite annoying and frustrating at this point.

10/25/11 Ė Dr Appointment

So, I went to the doctor yesterday and as soon as he heard my hoarse voice, he said, ďOK, chest x-ray.Ē No, this doc does not play. Luckily everything looks good, no fluid, no TB. So, Iím on strong meds to get this thing out of my system, and he wants me home resting for two more days. I need doctor notes for work now. First job Iíve ever had that requested them, so Iíve got one that says Iím not to return to work until Thursday. And so it goes. A limited number of sick days and 3 of them are being used for a common cold. Lupus sucks.

I also got this intense pain in my left shoulder going on that I havenít had this bad in a long time. He wasnít pleased about that either. So, thereís no taper from Prednisone at this point, and I am in no shape to give up the Plaquenil to see if Mefloquine would work. And there it is. He also said thereís no use in doing blood work at this time since I am sick. So, I go back in one month.

Then he said that thereís been a problem with my insurance, and that he hasnít been paid since June. Scary. I mean I go to see him so much. And then the eye doctor and most recently the OB/GYN, the neurologist… I hope all of this wonít be a problem, I mean, isnít that why we pay so much for health insurance, and then also pay the co-pays?

I mean, Iím going for my Mammo in two weeks, and a follow-up with the eye doctor in two weeks. And then back to the Rheumy in a month. What, am I supposed to NOT go? Yeah, I donít think so. I need to.

Oh, and since I was out to the doctor, I was finally able to pick up my reading glasses. Yes, one way to tell someone who has never had glasses before is to see them looking around the room through the glasses and saying, ďoh my, these make it worse.Ē The cashier said, ďwould you like to try to read something?Ē And she handed me a magazine. I looked at the magazine without them, and then with them, and I was like, ďOh my God! I can read!Ē I never felt so happy. Yes, brilliance abounds, doesnít it.

Thinking about my eyes, and this early sign of Glaucoma, I was speaking to two friends about it and they were both kind of freaked out. I donít know, maybe itís the Lupus, or the fact that Glaucoma runs in my family, but it doesnít freak me out at all. I mean my Momís had it for years now, and she still drives, and lives her life, and just takes her eye drops. My friends both seem to think that the Lupus has a way to make everything else just seem small. Every day I am amazed at how my thinking about everything has completely changed.

It gets to me sometimes to see other peopleís lives, so filled with happy joyous occasions, and mine is so filled with doctor appointments, and inability to get to the happy joyous occasions, but I need to let it go, and realize that this is just where life has led me right now. And look forward! Iíve got friends coming to visit in a few weeks, and my sister and her daughter coming down for my birthday. See, fun things can happen to me as well.

10/28/11 - Can we talk gas, Halloween, childcare and HR?

Yes, you can choose to skip this entry.

I returned to work yesterday, and about halfway through the day, it was like this incredible pain whooshed over the upper part of my body, including the stomach, making my arms and my entire upper body just feel weak and in pain. You canít sit in an open cubicle environment when youíre feeling like that, so I hid myself in the bathroom, sitting there, thinking WTF??? It was horrible. It felt like a heart attack, like there was no way to survive it, like it would never end. And then, then, it just passed. And it was over and I returned to my desk like nothing happened.

I have only had this experience once before, while at my parentsí house over the summer. My Mom explained that it was probably just reflux or gas or something. I donít understand how that level of pain could be Ďjustí anything, but how kind of embarrassing for it to be gas. You know? And I realized that in both situations, I had just eaten a bagel with cream cheese in the afternoon. So, now my greatest fear becomes manifest. Do I need to change my diet? Since Iíve never had a problem with bagels and cream cheese in the morning, maybe I can begin by restricting my intake of them to morning time and see how that goes.

And this afternoon, just randomly at work, as I was hesitantly cutting a piece of carrot cake for myself, all the while thinking of the gas incident from the prior day, my co-worker asked me if I had any dietary restrictions due to the Lupus. I was like shocked. Is he a mind reader? Uh, no. But here I was just thinking about this the day before and the question is posed directly to me. Is this a sign? Do signs exist? I donít know, but now Iím thinking of this stuff a little more frequently is all.

Moving on to the weekend, weíve finally got it figured out and I have plans for both days. YAY! Because of the impending winter storm, (WHAT!) we have moved the Bronx Zoo outing to the Childrenís Museum, for something warmer and dryer. So, that will be tomorrow. And I will get together with someone I havenít seen in over four years, easily. Weíve never met each otherís kids, and I canít wait!

Then on Sunday, I do have a ride to Jersey City, so Sabou can partake in some Halloween festivities for the kiddies, with a friend I havenít seen since diagnosis, apart from our respective childrenís birthday parties, and how much catching up can you really do at those things?

Itís nice to have these plans, to be able to be surrounded by people who knew the old me, and will be meeting the new me, and of course, my new family. And I canít wait.

One thing Iíve been dealing with, but was finally able to resolve is my upcoming eye doctor appointment. He wants it to be late in the afternoon, to make sure the field of vision test is consistent no matter the time of day, and the latest appointment is 4:30. I grabbed it, even though it means more time off work, and remember I just had two. Argh. So, I need to plan for childcare. Sigh. Again. See, I forgot that Youba has school on Thursdays, and is unable to pick her up. Well, it turns out that my Mom was planning to be in town, visiting with my sister, and I was like, wow, do you think you could spend a little time down here and take care of Sabou while Iím at my eye appointment? And it was all a go, and I was so looking forward to seeing my parents. And then, just a day or two later, she informs me that sheís decided to spend the entire week at my sisterís. Disappointed? Yes. Plan B? No. Sigh. And here we go again, into this spiral of why can other mothers figure this stuff out? They have meet-ups, babysitter exchanges, neighbors they can rely on. Why do I have none of this? Why do I feel so isolated? And so, yet again, I reach out to the only person I feel I can, my daycare provider, Abuela, who has cared for Sabou since she was 6 weeks old. She is more than willing to keep Sabou late that night so I can go to the doctor. I am so grateful, and yet I feel like I ask her to do too much. I mean I will pay her extra for that time, and I totally am planning on giving her a huge gift at Christmas, but still, why am I so hesitant to ask?

I went to an HR training for managers at work today and they kept bringing up problem employee situations, you know, like chronic lateness, frequent unexplained absences, and the like. Of course, parents were brought up in that category. His response was simply, you need to figure it out. You need to figure out alternative daycare. You need to call family, call friends, etc. Iím sitting there, supposedly getting the training because Iím a manager, and Iím sitting there thinking about all my doctor appointments, what if Sabou gets sick, what about if Youba goes to Mali without Sabou and I really am a single parent for a whole month, what if when Sabou gets to school sheís a complete troublemaker and I have a lot of meetings with the teacher. Yes, you see my mind can move far and fast. Luckily there is an EAP thatís supposed to be able to help us out with stuff like that.

Oh yeah, the best one. The HR trainer also mentioned those Ďproblemí employees who need to go to TIMBUKTU and need to have a month or so off because itís so far and they need to see family. Yeah, donít ask me why he used Timbuktu as the example, but there you go. Iím sitting there in my African Boubou from Mali, the country where Timbuktu is located, because itís HR International Week at work, so I got all dressed up, and this guy is talking about the Ďproblemí employees who go to Timbuktu! I nearly fell off my seat. And so it seems that there is a two-week limit on time off during peak season, which of course includes Christmas and New Yearís. I asked him when off-peak starts and he said January 2nd through Memorial Day. Well, maybe, just maybe, if I am ever healthy enough to return to Mali, or as he put it, Timbuktu, Iíll be able to take off enough time to make the trip worthwhile by going in off-peak season. No, in case youíre wondering, I canít make this stuff up.

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 30, 2011

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