Beyond the Absurd: Life with Lupus

by Mary Kay Diakite, LMSW

Mary Kay Diakite, LMSW continues her work on HIV/AIDS helping agencies service clients, as well as improve programs and set policy as a government worker. Prior to this, she ran a family case management program for African immigrants living with HIV/AIDS in New York City. Mary Kay taught for five years as Adjunct Professor at both Rutgers and Monmouth University Schools of Social Work. For the last eleven years, she’s been working with refugees, immigrants, asylum seekers, survivors of torture and detainees. She has run school-based programs for traumatized refugee and immigrant children in three public school districts. After 9/11, she was recruited to work with traumatized Arab, Muslim and South Asian communities. She conducts psychological evaluations on survivors of torture who are seeking asylum and being detained at the Elizabeth Detention Center. A former Peace Corps Volunteer, she served in Mali, West Africa from 1996 to 1998. She also spent three summers conducting cross border conflict resolution workshops in the Democratic Republic of Congo and in Rwanda. She is fluent in both French and Bambara.

Editor’s Note: Mary Kay Diakite (pronounced Jak-e-tay),and I met when we read our own poetry at the Burchfield-Penney Art Center in Buffalo, New York, in 1992. Last year, Mary Kay also contributed to PeaceOfMind an article on reconciliation with the people of Iraq.

6/26/11 – Another good day

So, the family, all of us, slept late today, and when I say that, I mean until about 9am, which was quite a treat. Once we were up and moving, it was off to the mall again, because we had bought the wrong wall mount for the TV. So, the second family trip to the mall in two days. It boosted my feelings immensely. We found the right one and headed home.

Youba and a neighbor put the TV into the wall, and it looks awesome. I feel this sense of accomplishment for our entire family. Weird but true.

A friend came over about 4:30 and Sabou and Youba went to nap at around 5:30, so again, we had adult girl time alone. We went out for a walk, to check out the architecture of cool buildings around where I live, to chat without being interrupted by a toddler, and to check out cheesy party idea at local 99 cent stores. The diversions, any type of diversion on the weekends, just really help me along. And this weekend showed me what all is possible for me and Youba and Sabou.

By the end of the day, pain had entered my right thumb and the left shoulder had increased a bit. The worst still seems to be the weakness in the legs that I feel the most on stairs and on the four block uphill trek to my apartment. But that becomes just part of the fabric of the day and not the overwhelming focus.

Tomorrow is a very busy day, and I hope I can handle it all. Here are my goals:

  1. Hand in 24-hour pee by 8am on the Upper East Side so I can

  2. Get to my work appointment all the way in Brooklyn by 9:30 in order to make sure that I can

  3. Get to my follow-up Rheumatologist appointment by 4:00 on the Upper East Side so we can figure out what to do about my medication, to keep the dose higher, or to taper off as recommended by the Ophthalmologist.

Feet (legs arms wrists and shoulders), don’t fail me now. :)

6/27/11 – Tapering off the Prednisone

My three goals from yesterday were all met successfully. Unfortunately, I did not know that blood work was supposed to accompany the pee drop off, so I had to make two trips to the blood work site one before work and one after work, and still made it to the Rheumy almost on time.

The Rheumy appointment went well. He agreed with the eye doctor, and I am now tapering off the Prednisone. I’m back down to 10mg until July 5th, and then down to 7.5mg until I see him again on July 18th. My fear remains that the horrible unpredictable random intense joint pain all over my body will return. When I mentioned this to him, and asked about prescription options beyond Prednisone, he simply stated, “There are always alternatives.” He didn’t go into details on what they might be, but at least I know there are options.

One very crucial piece of all this that I did not even consider is finding out when the eye doctor will be on vacation this summer. He wanted to make sure that we don’t get into this tapering thing, and something happens, and we can’t get to the eye doctor. So, after the appointment with the Rheumy, I walked around the corner to the Eye Doctor to find out his vacation schedule for the summer.

Please let me say that I have never done this before. It has never occurred to me to ask a doctor their schedule, and yet with therapists, it seems to be an important piece of the work. “I’m going away for three weeks. How will you take care of yourself while I’m gone?” etc… So, I had no idea what kind of reaction I’d get from him. Well, this doctor seems great, and I’m very blessed to say that he is only taking off Fridays this summer and will be around.

So, now we start the taper, and we wait to see what happens. I’m a little nervous and stated that to the doctor, and he informed me that there is a possibility that the joint pain does not come back. Except that then he looked at my latest blood results, and all of my complement studies (C3, C4 and CH50) are very low, indicating to him that I may still be in flare even though I haven’t had joint pain in some time now. Sigh.

Wish me luck.

6/28/11 – Second Support Group

So, today at work was physically and cognitively a great day. I am having no pain to speak of and my brain seems to be working fine, back to its pre-Lupus self. Not sure what this means for the taper and if Prednisone is the culprit, and if it is what that means for the joy of joint-pain-free days.

After work, I went to my first Manhattan Support Group. They were having a presentation entitled “Coping with Lupus”, which I definitely need help with, so I was very much looking forward to it. It was run by an LCSW who has been working with folks living with all kinds of chronic illnesses since 1969. The place was PACKED, the energy in that room, the questions, the frustrations, the sharing of lifetimes of experiences was just amazing.

Employment issues and pushing ourselves too hard were the main points of conversation. Again, I seemed to be the only one in the room working full-time. No one had good experiences to share from the work-end of things. I spoke my concern of losing my ability to work and then being stuck at home as a stay-at-home mom to a toddler who exhausts me much more than work does. I left the meeting with two phone numbers of other women who are raising young children. I’ve got local support now from women who understand parenting toddlers, and parenting toddlers under the influence of Lupus. Now, I need to remember to reach out to them when I need help. Why is that so hard?

I’ve also made a decision to stay close to home during this taper, near my doctors. I have no idea what to expect and while I know it is disappointing to friends and family who live far away and would love to have me and Sabou to visit, it is just not in my realm of reality right now. I need to figure this thing out first, and then figure out what I can do within its confines.

6/29/11 – Reminder to Self: do NOT get inspired

It was yet another fine day at work. Brain was working and full access to all joints. So, for some reason I took that to mean that I could still do things that I used to do. Big mistake.

See, there’s another support group today in Bronx, remember, the one I went to last week in my brain fog and found no one there? At first my brain said to me, “Look, you just went to one yesterday, you’ve got counseling on Thursday, so better to just skip this one and relax at home.” Yes, that’s definitely one way to go, but, of course, my mind did not stop, “OR, remember, the facilitator said that children whatever age, are welcome. Your girl never gets to go anywhere. Your husband has been doing so much for you lately, and he needs to sleep. You could bring her to support group.” And for some STUPID reason, this is the voice I listened to. Sigh.

So, I get home from work, pack up the stroller with snacks, water, diaper bag, crayons, and paper and went to day care to get her. There we added the usual suspects to the pile of Sabou stuff – Curious George and her purse full of random plastic toys. And off we went. What was I thinking?

Because of rush hour, it took two trains to get there, and that last subway stop, was deep in the ground, and when I say deep, I mean five long staircases deep, with NO elevator, only an escalator, that strollers cannot go on. Can you say, OMG!

But NYC subways being what they are, you can only see one staircase at a time, so you have no idea how many more are coming until you get to the next landing. And, up we went. Slowly. Slowly. What was I thinking?

With each flight of stairs, and the weight of the stroller and the weight of the baby, I was just crashing. I did make it up four of the five flights, and at that point what the Hell are you supposed to do? I’m breathing heavy, like panting, my legs and arms and shoulders feel like jell-o, and the journey is NOT over. I’m on a landing, not the sidewalk, and I can barely move.

A woman came down the stairs and saw me and stopped. Between pants I looked at her and said, “There’s. No. Elevator.” She looked at me like I was a little stupid, because, of course, she, and probably everyone who lives in this section of town are QUITE aware that there is no elevator. But what she did next was amazing. She helped me up the last flight of stairs to the sidewalk, even though she had just gone down the same stairs. An angel walking the earth.

Then I began the 10 block hike uphill to the hospital and my legs can barely support me. My shoulders can barely push the stroller. Slowly, slowly we head uphill to the hospital.

When I arrive, I find out that the facilitator left 2 minutes before I arrived because no one came to the support group. WHAT?! Now, not only am I about to collapse right here in the hospital, but, I am PISSED as HELL! The poor security guy, who did NOT deserve it, had to hear a bit of my frustration. But, now, there is absolutely NO WAY I can go back to that subway. Like, no way. I can barely walk at all and I am weak as anything. And I have no idea what to do.

I call my close friend, who I rely on for just about everything, Patricia in Milwaukee. She immediately reminds me that I have a husband, who has access to my car, and can come and pick me up. Dag. For some reason, calling him would have NEVER crossed my mind. In my mind, he is sleeping; he needs to sleep. But, what a revelation. So, I called. No answer. Right, because he’s sleeping. So, I just sat down in the lobby on a comfy chair, while the girl amused herself in the stroller, coloring with the crayons, and eating some snacks.

All I know is that at this point, the safest place for me to be is in a hospital lobby, or anywhere near a hospital because I have no idea what to expect from my body next.

He calls back, and of course, no question, he is on his way to get the car and come get me. Somehow, at this point in my life, I’ve been given a ‘knight in shining armor’ as Patricia calls him. She reminds me to let him be my hero.

He came and got us, drove us home, dropped me off at the apartment building, parked the car, pushed Sabou in the stroller up the four blocks from the parking lot, the same four blocks I would have never been able to handle, and picked up Jerk Chicken on the way home. Yes, I do have my knight in shining armor, and I need to remember that at all costs.

Needless to say, I am very worried about the impending ramifications from this fiasco of an idea that I had on the third subway home from work. I need to be very careful not to get inspired. I need to remember that just getting to day care to work to day care and to home on a daily basis is incredible in itself and not to push it. I’ve decided to NEVER go back to that support group and to just stay with the Manhattan one. Two weeks in a row now I’ve tried to get there, and something has always gone wrong.

I need to remember to rely on my biggest supporter, my champion, the father of Sabou and my husband, Youba. He said, “in sickness and in health” and he really meant it. Loving him much lately.

6/30/11 – So Far So Good and Feeling Blessed

So, after yesterday’s fiasco, I had no idea what to expect today – intense pain, headache, brain fog, lack of movement, extreme fatigue? And I must admit that it hasn’t been that bad. The legs still feel very weak, and I walk slower than usual, and the left shoulder has pain, but really, when does it not? And there were intermittent headaches, but not all that bad. There were moments of extreme fatigue, but they also passed. I have to say that I really can’t complain.

Work was great, and I made it to my counselor almost on time. I shared with him my fiasco from yesterday and let him know that I had learned from the experience.

Since Youba had stepped up to the plate big time yesterday, I was the one that brought home dinner today. When I got home, neither he nor Sabou were home. He had taken her to the park, to the playground and she had a chance to PLAY OUTSIDE! That’s a huge milestone for Youba. It was his first time doing something like that on his own. I am just thrilled to report that Sabou got out of the house today and out of the stroller and actually played outside! An awesome day.

My plans for the weekend are very realistic: laundry, dishes, and relaxing time at home. A short trip to NJ for a BBQ on Monday, but only because we’ve been offered rides both ways. And just need to take it easy.

7/1/11 – Ready for the long weekend

Not much to speak of in terms of pain or headaches today, just the now constant weakness in my legs and the ongoing pain in the left shoulder. There were some intermittent headaches, but nothing too bad.

Gearing up for the long weekend, and learning from past mistakes, I have nothing planned. If I can get the dishes and the laundry done, that would be amazing. Youba has offered to take us to the park on Saturday morning. That would be our first time doing that as a family, and I am so psyched for that. I have the BBQ in New Jersey on Monday, but only because transportation is being provided both to and from the event. And I am getting smarter, slowing down, and getting smarter about this disease. Youba will take on cleaning the house while we’re gone on Monday. Smaller doable goals seem to be the way to go, and working as a team seems the only way to survive this.

The next taper off Prednisone starts on Tuesday, down to 7.5mg. I’ll keep you posted.

7/2/11 – Sabou got to be outside all day :)

A great day. After dousing myself with SPF 100+ and putting on my SPF 50+ wide-rim hat, in the morning I took Sabou to the local park so that Youba could stay home and clean the apartment without distraction; he offered. The morning is a great time to go. There were only two other girls there, about Sabou’s age. She had full range of the playground and got to interact with other little girls. It was so cute. I was able to relax a little knowing that the bigger kids were not around and we had a fabulous time.

While we were there, a friend called wanting to know if we’d like to go to lunch and the Central Park Zoo. How could I refuse? I know that there is an elevator at the subway station near the local park, and figured with all the tourism down by Central Park, there would have to be elevators around, so, yes, of course we said yes.

Sabou and I head into Manhattan, have a fabulous brunch of pancakes, one of her favorites, and then walked over to the Zoo. Since Sabou crashed after eating, I was able to get her face painted, a cute little butterfly while she slept. No way would that have happened if she were awake. She loved seeing the animals and walking/running all over the park. I loved seeing the joy in her face knowing that she wasn’t stuck in the living room. My friend was able to pick her up, carry her, take her to see animals, push the stroller, show her how to feed the animals, etc. It was wonderful to have her there. I don’t think I could have done this trip on my own. Then the finale was Dora the Explorer in 4-D, not that my girl would ever leave glasses on her face, but she was awesome in the movie theatre. Just sat on my lap and watched one of her all time favorite TV shows.

The key is not doing things alone. The key is having someone to do these kinds of activities with, so you can take a break when needed is. I was extremely exhausted by the end of our adventures, and was wrong about the elevators in the touristy part of town, so my friend helped us down the subway stairs. I reiterate it’s always better not to do these things alone.

Once home, the entire house was clean and was wonderful to walk into. I could feel pain growing in my left shoulder and right knee, but somehow, I didn’t really care. Both Sabou and I deserved a day like that. When I told Youba all about it, about how great Sabou’s day was, he said, “Sounds like you had an awesome day too.” Yes, he is right.

The invitations to Sabou’s birthday arrived in the mail today as well. They are so cute. I got them all addressed and ready to send when she went to sleep. :)

Something I don’t think I’ve mentioned, because I am trying just to ignore it, are these little annoying headaches that keep showing up over the past few days. They don’t last long, just show up, say hi, stick around for a bit, and go away again. They are nothing like the really bad ones I’ve had before, but nonetheless there, annoyingly so, and the taper off Prednisone starts on Tuesday. I try not to think about it. I try not to get nervous, we just have to wait and see what happens. I’m so glad my parents will be here for the first few days of the taper. And maybe there will be no problem at all. The headaches just serve as a reminder to me of what’s coming up. On the other hand, I do need to report that I have not had an aura since June 18th, which in and of itself is already a break in the pattern of every 8 to 9 days. What that means I have no idea.

Here’s a link to another definition of what living with lupus is like:
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Last edited by Tyler Schuster.   Page last modified on July 05, 2011

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