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.

7/24/11 Ė Two Adventures and Two Naps

I woke up with very little energy this morning, and just needed to sleep. Luckily the girl made that a possibility, and I got to stay in bed until about noon. Then it was off to get her something to eat, and guess what, the Dominican Parade was in the Bronx today. All the parades finish up right outside our apartment, so the energy on the street was very exciting. We quickly got some fast food, and found a place to watch the parade. After just 20 minutes of standing there, I couldn’t take it anymore, the heat, the sun, even with my hat etc. I just couldn’t go on. So, we went back inside and watched the floats and musicians pass by our window in the air conditioning. So cute, Sabou would scream “Choo Choo” every time a float went by.

Then, fatigue hit again, and I just needed to sleep. I think I slept again until about 4pm, around the time we decided to go back to City Island, this lovely place in the Bronx with the feel of a New England fishing town. Well, the Yankee game had just ended and the parade was just finishing up, and the traffic was unbelievable. I kept asking Youba if he wanted to just go somewhere else, but no, he really loves it there, so we fought the traffic, and won I think, it really wasn’t all that bad.

The seafood place right on the water, overlooking the bay, the seagulls, and the boats was jam packed. It must have taken more than 30 minutes to finally order and receive the food. The only tables left were of course in the sun. argh. I tried, I really tried to enjoy that meal in that lovely environment, but the sun made me feel like I was in a frying pan, and I couldn’t stop feeling like I was being deep fried. I scarfed down some of my meal and grabbed Sabou and ran away from the sun into the shade. I probably looked like a freak, but I just don’t feel good under the hot sun like that. My mood changed so quickly to anger, frustration and complete irritation. Argh. I did find a table inside and asked Youba to move our stuff there. He was reluctant because there was no AC and it was hot as hell, but he complied, because he knows of my issues with the sun.

Then it was back into the traffic heading home, which also was not so bad. We probably got home about 7pm, when I realized that I had forgotten to take my medicine with us. So, I took the evening meds and we all fell asleep by 9pm. Lots of sleep today. I probably just really needed it.

Newsflash - annoying headache on the left side over the eye, and the beginnings of a toothache, also on the left side. Sigh.

7/25/11 Ė Bad News

Woke up with neither headache nor toothache, thank goodness. I began the next taper from Prednisone, down to 6mg. One thing that I am noticing is that flickers of the joint pain come back, show themselves, and then move on. I’ve felt stuff in my feet, my hips, my back, my fingers, and my hands. I’m just waiting it out to see if the joint pain comes back full force. There are also annoying headaches, but no such eye issues to speak of.

Somewhere during the course of the day, I received word that one of my cousins has been diagnosed with Guilliane Barre Syndrome, an auto-immune disorder that attacks the nervous system and muscles and has rendered him unable to breathe on his own and completely paralyzed. He is in the hospital on a ventilator and unable to move. I feel so much for his Mom right now. She lost her only sister to brain cancer a little over a year ago, and now she is going through this with her only son. She is keeping my father informed with updates, and we just wait to hear.

Somehow today I also realized that I only had one Hydroxochloroquine pill left. No idea how that happened. It seems like just yesterday I had three. Then I remembered that I take two a day, and it all made sense. Back to the pharmacy. I feel like I live at the pharmacy. Some prescriptions are only covered for 21 days, some 30 days, and some 90 days. It’s quite annoying, but worth the trip.

A new thing just showed up as well. There is a tender area, painful to the touch right between my breasts, like I have no idea what that is, but I am watching it now.

Some remarks from the Prednisone taper - I feel much more fatigue, need to just rest after work, it seems that I crash alongside Sabou now early each evening. But today, I am extremely grateful that I can walk and work and laugh and play and talk on the phone and all the things that, even while there is pain, I am not in a hospital on a ventilator unable to move on my own. And I feel so much for my cousin and his family right now.

7/27/11 Ė Itís BACK ! Yes, Shoulder and Back Pain

Oh, the pain. Today it was in the left shoulder and left back. Very painful. It was difficult to lie down comfortably in any position. It made relaxing and sleeping very difficult. There have also been these annoying headaches that are not really going away. Iím thinking to call the Rheumy and tell him whatís going on as it may be related to the recent taper down to 6mgs of Prednisone. Iím scared that the pain will just get worse, and Iíll be back to where I was in May.

7/28/11 Ė Still in pain, but a definite improvement

So weird, I woke up this morning and the pain was much reduced. Still a bit in the shoulder but the back pain was pretty much gone. I got through work no problem, and had no problems after work either. I didnít call the Rheumy as I was planning to because I just woke up feeling better.

I have to say that the reaction has been quite immediate, and that as soon as the pain came back, it was like watching all my parenting progress go down the drain. Iím less patient, and more loud with her again.

Weirdly, I got a call from my bank saying that my computer has Malware and they will close my account if I try to access it from the infected computer again. WHAT? So, despite my pain, I had to get the computer to professionals who can clean it. And, I donít know if itís just learning to deal with pain over time or what it is, but no question, I was driving to the store. I packed up the girl in the stroller and pushed her down the four blocks to the parking lot and had no idea how I was going to lift her into the car seat or get the stroller in the trunk, but you know what, I just did it. Used the good right side as much as possible and just made it happen. It was a total different me from before when I was terrified to drive on my own with the baby with the pain. The store was just down the street, so maybe thatís why? Or the fact that I just cannot live without my computer.

She was horrible in the store and I had no patience for it. Did her annoying toddler antics in the parking lot as well. So, we just went right home where I could rest.

7/29/11 Ė Aura while sleeping and more bad news

Now, this was a weird experience. I swear, I was sleeping and dreaming, when an aura started, and the aura entered my dream. In my dream I was having trouble seeing clearly because of this aura, and it was such a weird experience that it woke me up. When I woke up, sure enough, I was in the middle of having an aura. I had no idea I could have one while sleeping, or that it would wake me up. My first reaction was uh oh, when is the headache coming? Hopefully not at work. But I was fine at work, very little pain to speak of, and no headache. Thank goodness.

Now, what Iím dealing with is the fact that I no longer need help because the intense pain and fatigue are gone, yet people are still scheduled to come, people who had scheduled when I requested help back in May/June. Now, I would love the company and the opportunity to do fun things with Sabou, so I really donít want anyone to cancel, and yet Iím starting to feel selfish, because they are coming with the thought that it is helpful to me, and I am just looking forward to the playdates with Sabou.

It saddens me to think that people only want to come and hang out if they need to in order to help me. No one wants to come and just hang out for fun. But maybe Iím just thinking about this too hard.

I got an update on my cousin today. He has been diagnosed with Tranverse Myelitis on top of the Guillain-Barre Syndrome and is paralyzed from the neck down. He is able to hear, and could talk if he didnít have the ventilator in his mouth. He does nod his head for yes and no when people speak to him. I canít even imagine what heís going through and it reminds me that my problems are so small.

As for pain, intense pain in the left shoulder and achiness down the left arm. I had trouble raising the arm after work, but it subsided as fast as it showed up.

Iíve done some internet research on both diseases and SLE is mentioned in both cases…

Guillain Barre: Guillain-Barre syndrome may occur along with viral infections such as:

  • AIDS
  • Herpes simplex
  • Mononucleosis

It may also occur with other medical conditions such as systemic lupus erythematosus or Hodgkin’s disease. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001704/

Tranverse Myelitis: Because some affected individuals also have autoimmune diseases such as systemic lupus erythematosus, Sjogrenís syndrome, and sarcoidosis, some scientists suggest that transverse myelitis may also be an autoimmune disorder http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

...and I just try not to think about it and to be thankful for what I have and am able to do, because anything can change and change drastically in a moment. Yes, my problems are so small.

7/30/11 Ė Awesome Day

Today was just an awesome day, for real. My brother and nephew arrived for the weekend. This had originally been scheduled when my symptoms were overwhelming and I couldnít pick up the baby, wash dishes, or change diapers. But now, I am completely functional and they came anyway. We had an awesome day. I cooked a big lunch for them, and then we headed out to Orchard Beach and City Island, which is fast becoming our favorite place in the Bronx. I was decked out in my SPF clothing and dowsed in SPF 100. Covered from head to toe. My brother and nephew just loved the beach, and there was much shade for me to sit in. Youba took Sabou into the water, and she just loved playing in the sand and running around free. Then it was off to a wonderful seafood dinner. Yummy.

Because the Yankees are in town, and despite our best efforts, my nephew is a Yankee fan, I walked them down by the stadium to feel the energy, see the new stadium, and get a peak inside. I think he loved it. I think we just wished we had tickets. :) It was an awesome day.

And tomorrow, another brother and his daughter are joining us for a day at Bronx Zoo, when Youbaís nephew arrives from Louisiana. I am LOVING having all this company and guests.

7/31/11 Ė Another awesome day

I am amazed at how being close to family can change oneís mindset. I have had this awesome weekend, mostly because my brother and his son were staying with me, my husbandís nephew arrived from rural Louisiana to spend two weeks with us in the big city, and my other brother and his daughter took the train down to meet us all at the Bronx Zoo today. Just to see Sabou playing and laughing and kidding around with three of her cousins was awesome. Just to have the time and space to laugh and catch up with two my brothers was awesome.

Now, after the long beach day yesterday, I have to say that I woke up with a lot of fatigue and some achy-pain in my lower legs. I was really wondering how I would handle pushing the stroller all through the zoo today, but you know what, I got up despite the pain and the fatigue, and found that by showing up and getting myself up and going, that either I just forgot about the pain and the fatigue, because I got all engrossed in the present, or it actually did disappear. Now, at some point, I definitely had had enough and needed to just sit down, but donít all parents feel like that at the zoo?

My brothers were watching me closely too. They are concerned and they care. Whenever I seemed to be slowing down, or just looking tired, they checked in on me to see what I need and how they can help. It made me feel so good, and made me want to be strong. They are awesome.

I got home and was just exhausted, and luckily Sabou was too. She actually put herself to bed at 8:30, right on time, without me or Youba asking. It was adorable. I joined her at 8:30 as well, and Youba settled Siaka down to bed before leaving for work. Partnership is key.

8/7/11 Ė long time no write

Itís been a while. I am learning that having two kids in the house at very different ages makes it more difficult to find the alone time I need to write. And my parents came to stay with us for a couple of days, which was awesome, but added to the lack of time to write. So, there are days of adventures, and symptoms, and such that are now long gone.

My goal since Siaka arrived has been to show him a fabulous time here in NYC. So, Youba took him to see the Brooklyn Bridge and China Town. We spent an evening in Times Square and took him on the Ferris Wheel at Toys R Us. Saturday was Sabouís birthday bash where he had a ton of fun. And today was the Norwalk Maritime Aquarium in Connecticut. I canít do much for him during the work week because I come home exhausted and keep falling asleep before he does, so, no matter my fatigue, pain or otherwise, I am determined to get him out on the weekends.

Yes, I have been experiencing more pain, but that may be because Iím pushing myself more lately. I am driving. I am getting out of the house, pushing the stroller, walking more, etc. Today I did the drive to CT and back and the legs were like jelly when I got home, so I just chilled on the couch and passed out with Sabou when she went to bed.

The next Prednisone taper is tomorrow, along with the next bunch of blood and urine tests. Then itís back to the Rheumy next week for follow up. I havenít had an aura since that weird one a while back in my sleep, but there still are the headaches off and on. Thereís been noticeably more pain in my shoulders again, and sometimes the back. Folding clothes is the worst. But I am proud to say that I am doing my own laundry again.

I find that while I in no way completely trust my body, not sure if that will ever come back fully, but I am willing to do things that I wasnít willing to do before. I am driving myself and the kids.. And itís OK. Um, I canít think of anything else, but thatís been a big one for me.

As for my cousin, he now has a Trach so he can speak if someone presses it for him, and he has moved his toes about an inch. So, thereís been some progress, but itís a very slow go. Heís auto-immune just like me, and I remember to be grateful and make the most of every day for me and Sabou and Youba and Siaka.

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 August 09, 2011

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