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.

6/19/11 – Happy Fathers Day?

So, Youba was up all night, and when Sabou woke up at 7:30am, he promptly went to bed. I woke him up at like 10am because our plan was to leave by 11am. I knew that it would be me who was driving. Luckily the right hand was fine. Only some pain in the left shoulder, you know the usual stuff that never goes away, so I figured, let’s do this. And I drove the 2 hours to New Haven. I had to shift which hand was on the wheel, what angle it was set at, and whether or not the fingers were opened or closed, but we made it without a hitch. It was so nice to not be in NYC; to see boats, and beautiful ocean views, and trees, and stuff. The food was awesome at the restaurant, and I think we all enjoyed ourselves.

Then I drove home. Sabou and Youba both slept the entire way of both trips. When we got home, Sabou was rested, my legs were feeling very weak, and Youba passed out on the bed for hours until it was time for him to go to work. So, with my weak legs, and having driven 4 hours today, I was again watching the baby alone. It is not easy.

We’ve got the portable air conditioner installed in the living room now, and the whole reason we chose it was so that it could be easily moved from the living room to the bedroom as needed. So, after watching Sabou for hours on end, and him sleeping the entire day, I asked him to move it into the bedroom for me. He just straight out said no and told me to sleep in Sabou’s room. I was shocked already and then he proceeded to ask me to do a favor for him. I never question his requests. I never say no, and yet he is so willing to. Need to definitely work on that.

And this is where we are. And I don’t know which of these feelings stem from frustration with him, you know, normal marriage stuff, and which ones are frustration with Lupus and my new found limitations, and which ones are frustrations regarding being a mother of a toddler. But, I do know that I am tired, that I drove for four hours today after thinking for so long I couldn’t, that my legs still feel weak, and that the girl is finally to bed.

I can’t wait for tomorrow, when I’m back to work, and I get to go to the doctor and the pharmacy. This is a big day out for me. And I can’t wait.

6/20/11 – Follow-up with Rheumy and the importance of time alone

Legs are still weak, so I just walk slow and a little unsteady, but no pain, so I really can’t complain. Work was fine, but my focus was really on getting to have my second appointment with this new Rheumy I really like. He had my blood results, my EKG results, and my urine results. And here we go:

  1. No Hashimotos, just Hypothyroidism. Not sure what the difference is anyway. Also not sure if being steady on Levoxyl for 12 years now had any impact on the results of this test. Didn’t think fast enough to ask.

  2. No Myositis – just says negative, negative, negative

  3. YES, to Lupus again. This time instead of >800 I’m >300 so I take that as some improvement, even though I think it lists >4 as positive.

  4. He didn’t like my C3 and C4, which I have no idea what they are, so he’s going to look at them again, and add a CH50 test. Also have no idea.

  5. He states that nothing showed up in my urine, but to be sure, I get to collect 24 hours of pee this weekend. Maybe it will help with the potty training? See, mommy has her own special potty too. J

  6. EKG was a little abnormal. I told him that’s happened before.

And once again, I am so happy with this doctor. He listens to me. I told him about the headaches and the auras. He simply looked at me and said, “So, are you ready for another Ophthalmologist?” I said, “Yes. Please!” So, he’s referring me to an eye doctor that he uses regularly and who understands Lupus. He thinks we can prevent these auras, through an increased dosage of Prednisone, and by changing how I take the Prednisone. So, now I’ll take a dosage first thing in the morning, and add on a small dose in the evening, basically breakfast and dinner, like the Hydroxochloroquine. He said not to stay on the increased dose more than two weeks, he just wants to see if it works in decreasing the frequency of the auras and headaches. What I like about the new dosing structure is that now there is no pill I need to take at lunch. So, I am free to not have to worry about taking a pill at work. I just need to discipline myself to take the lunch anyway and keep the three solid meals a day going, that seem to be working so well for me. And I’ll go back to this doctor in another month.

Then it was off to the pharmacist to pick up the Levoxyl and the new Prednisone. Another joy, and I’m not being sarcastic. Something happens to my inner happiness gauge when I know that I have this time to myself, to concentrate on me, with no baby nor husband and their needs. I get to just focus on me, Mom. And it allows me to think a bit clearer.

So, Youba has shared with me that a co-worker of his would like to come to Mali with us the next time we go. News to me.

So, I asked him who he is, and he responded, “Oh, you don’t know him.” His canned response for many things I ask.

“Well, did you tell him I’m sick?”

“No, you’re the one who’s sick. It’s your responsibility who you tell that you are sick.”

“OK, but I don’t know him. Does he have a wife?”

“No.”

“Oh, that’s too bad. Maybe she could have helped me with Sabou.”

Anyway, because of the heat and sun intensity over there, cold season being about 100 degrees, and complete lack of shade, and if I am relegated to the living room here in the Bronx, I can only imagine it being a whole lot worse over there, and hotter than Hell inside, where I would have to stay. And in this moment of alone time and clear thinking, I realize, you know what? He and his friend can go to Mali without me. I’ll get a month to myself, and the baby can still go see her family, and he can still go see his family, and we won’t have to worry about me having a flare or a complication so far from home and my doctors, and wow, like relief just rained over me. I have no idea how he’ll respond to this, but with my health, I may just have to stick to it.

I also got to catch up on phone calls with friends while waiting the hour wait at the pharmacy, and got to discuss my Saturday bad attitudes days with a friend who lives about an hour away. She then immediately offered to come get Sabou and me and take us to her house for the weekend. I can’t tell you how much that meant to me, until I woke up this morning and realized I have to collect my pee for 24 hours this weekend. Sigh. I refuse to take that large unsightly container to work and have it sitting on my cubicle. J But, just the willingness and the support that I could feel from her boosted my energy and hope and mood.

6/21/11 – I forgot

So today was a painless day, and for that I am extremely grateful. A co-worker, who has witnessed my Lupus at its worst said to me in a meeting, “I’m so happy to see you be able to take notes.” I know. I also was very happy. And the legs are still weak, I think from that drive, but no pain, so I can’t complain, and there’s nothing wrong with walking slowly, even in NYC.

What I did notice all day long today was forgetfulness, like even mid-sentence. I’d start to speak a thought to a co-worker, and then lose the point before the sentence was complete. Nothing came back either. Sitting in a meeting this happened. Speaking to co-workers this happened. Sigh. It makes me remember a day when I was sharp and clever and lots of fun stuff. Now, just take it as it comes.

I met a co-worker on the floor above where I work who recently suffered a stroke. She was amazing and inspiring to me. She had trouble reading a document out loud to us, but you know what, she was there, she was trying, and post-stroke, I believe she was doing a fantastic job, and she still had her job. It gave me such hope for my future in this job, whatever happens.

I guess cognitive stuff is also a piece I need to start keeping track of. Lupus, if nothing else, keeps one on her toes, all the time.

Oh yeah, I just remembered, I forgot my phone at work and I don’t return there until Thursday. Sigh.

6/22/11 - OK, now I’m just confused

I am just completely confused at this point, and don’t know what to do. So, here it is. I went to the Rheumy on Monday, explained to him about the frequency of the auras (about every 9 days) followed by the intense headaches (about 9 days later) and days here and there of limited cognition. And he decided to up my Prednisone to 15mg to see if that lessens the frequency. He told me to take the upped dose for only two weeks, and then go back down to my usual 10mg, and come back to see him in a month. He also told me to go see an Ophthalmologist colleague of his who understands Lupus.

So, this morning, I am off to an agency in Harlem, a part of NYC that I worked at for over two years, and I got completely turned around, confused and basically lost. It was awful. I’d been there a million times, and I just couldn’t get my bearings. I was about 20 minutes late to my meeting. I miss my brain.

Afterwards, I headed for the new blood work prescribed by the doctor and to pick up my huge container for my 24 hour pee-collection this weekend. Since it was right in the neighborhood near the Rheumy and the Eye Doctor, I decide to walk over to the Eye Doctor to schedule an appointment, since I don’t have my phone, which I left in the office yesterday. When I get there, the office is completely void of any patients, and he is able to see me right away. Can you imagine? I don’t get that kind of service when I HAVE an appointment. I was just relieved and thrilled. Finally, something working out.

So, I got to see the new Ophthalmologist, my second one, and he is awesome, very knowledgeable, and listened to me. He thinks the auras and headaches are being caused by the Prednisone and wants me to ask the Rheumy to taper me off of Prednisone so that he can figure out if the cause is medication or if I need to see a headache specialist/Neurologist.

So, I tell him that the Rheumy just upped the dose and doesn’t want to see me for another month. He said, call him right away and get back in there to see him as soon as possible. Call? Um, I don’t have a phone. I didn’t say that part, but you know I thought it.

So, since the Rheumy is just around the corner, I take another walk over to his office to reschedule the appointment. He is able to see me on Monday, just a few days away.

And in this moment I realize that I may always have to live in NYC. Where else can you get this kind of service, with so many doctors who understand Lupus, with colleagues just around the corner? I think I’m stuck here. And I think of fellow Lupies who I have met online, who don’t live in big cities, and the two to three hours they take just to see a doctor. At the Lupus conference last week, they said that NYC is probably the best place to have Lupus, if there is one.

So, I am going back to the Rheumy on Monday. Just a few days away.

Now, I don’t know what to do. Do I up the dose and take the 15mg or go back down to 10mg until Monday?

If the Rheumy agrees with the Eye Doctor and has me start tapering off the Prednisone, does that mean that all that overwhelming excruciating pain randomly and unpredictably around my body is coming back? That’s my biggest fear. Are my eyes and brain worth the pain, or is the pain worth having eyes and a brain? I have no idea. I am so confused. How does anyone make these kinds of decisions?

6/23/11 – Why is my little life so complicated now?

No cognitive problems today. No pain today. Back to my old self, and enjoyed it.

I decided to stay with the 15mg until Monday, and discuss this all with the doctor at that time. Don’t know if the good day today was due to the increase, or just that I was due one.

Any difficulties I had getting around the city today can be blamed completely on the trains, and not on my cognition. I swear, there were absolutely NO E trains going in my direction. After like 20 minutes of waiting, they finally make the announcement that E trains are running on express, so now I have to figure out how to get to the express – two stair cases and a long walkway later, I find it and get on the E. Then I see that at 42nd Street, I can transfer to the R, which is a train I need, so I jump out and start following the signs to the R, and following, and following, down corridors, through walkways, up the stairs, down the stairs, I swear, I thought I was going to either pass out or die, or both. And I kept trudging, walking, walking, sweating, sweating, getting slower and slower, and I think I am really close, and there is yet another long upstairs staircase I need to climb. Slowly, slowly, grabbing on to the rail, I make it up the stairs and finally to an R train. Now, I am more than 30 minutes late to my counseling appointment, and it’s due to the trains – again. And I’m absolutely soaked in my sweat, and the legs are feeling very weak.

Luckily the counselor is still able to give me a few minutes before his next appointment. I explain the train situation to him, and make it clear, “I don’t want to talk about NYC again today.” He says, “Right, we did that last time. You either adapt or you leave.” Well, in my heart and soul I know that I am stuck here. My job requires NYC residency. My doctors, and many Lupus doctors and specialists are here. My husband’s job is here – and he provides the health insurance to us all. So, I guess it comes down to adapt. Sigh.

We decided that 5:00pm appointments in his downtown office just don’t work. We’re moving to 5:45 in his uptown office, which is actually on the route of my commute to get home, to see if that helps my stress level and ability to get to the appointment on time, finally. We’ll pilot this idea in July.

So much in my life right now is focused on adaptation. My friend called again asking how to make the trip to Jersey City work for me. And we talked. And we talked. And we problem solved. And we really tried. Here’s a little of how it went.

“Can you bring the car seat with you, if you take the train? Then I can drive you home.”

“If my arms and legs are working, I can get the stroller down the subway stairs. There’s only one stop where I need help, because all the others I’ll use to get to Jersey City have elevators. But, there is no way to carry the car seat and push the stroller. Can Sabou use your daughter’s car seat, or is she still in the infant carrier?’

“She’s still in the infant carrier.”

“Oh, that won’t work.”

“If I come and get you, can we transfer your car seat to my car?”

“I’ve never done it and someone installed it for me, but we could try.”

She still wants me for the whole weekend, despite my need to collect pee for 24 hours. But, I refuse to store my pee in her fridge. That just seems to be overstepping a boundary, so I’ll need to come home on Saturday.

What we’ve decided so far is that Sabou and I will attempt to make a day trip to Jersey City, on our own by train Saturday morning and come back Saturday night, also by train. There’s a birthday party for a one-year old that Sabou and I can go to, so she can play outside and have a BBQ, and I can be somewhere else besides the living room. I make no promises that I’ll even make it on Saturday.

Just this evening though, weird backache showed up and stomach also feels weird. This could just be the fact that I cooked and is not Lupus related, or it could be a result of the horrible commute and intense walking and stairs that I did today, but I am not sure.

Had lots of phone calls with parents, friends and my sister, which was great.

My parents will come to babysit the week that day care is closed! I’ll have them for three more days. I am just thrilled. They are really coming through in a terrible time of need.

6/24/11 – No pain and I have my brain

Today was a great day. I had no pain, anywhere, and my brain was at 100%. It was awesome. And I refuse to take it for granted. And I had no problem remembering to take my medicine, so I think the routine is finally coming into place.

AM – first thing: Levoxyl and Aviane

AM – an hour later with breakfast: Calcium and Vitamin D; Hydroxochloroquine; Prednisone 10mg

PM – with dinner: Calcium and Vitamin D; Hydroxochloroquine; Prednisone 5mg

9 pills a day. I guess I can’t complain. I remember having clients who took upwards of 30 a day.

Only one thing to note, the legs are definitely weak. Subway stairs just really get to me, and I hold the railing and go slow. I saw co-workers up ahead of me, but they were moving so fast, I just let it go. If I called to them to walk together, there is NO way that I would have been able to keep up with them anyway. Sigh.

Newsflash: I am not going to Jersey City. It just seems like too much – to pack the baby and the stroller up, to get onto the subway, to transfer to the PATH train, to figure out transportation from the train station to my friend’s house, and then do it all again in the evening. Like just too much. I called my friend. She was disappointed because now with her summer plans, it will be impossible to see me for several more weeks, maybe until August. She sounded sad and frustrated and pleaded with me, “Please tell me that this is not how it’s going to be forever; that it is just how it is for now and that things do get better, because this is just getting depressing.” I told her, I have no idea, and I can’t think in those terms. If I get to a place where this is all just depressing, then what do I have left? I remind her that it’s all still so new, and that remissions do happen, and we’ll just have to wait and see. She said I should write for a TV show called “The C Word” which is about people living with cancer and basically shows them really trying to live a normal life and keeping their humor about them. She said it makes her think of me. So, what about it, world, are you ready for the “The L Word?” Oops, I think that was taken by LOGO a long time ago. I guess we’ll have to come up with something else. Please note: I have never watched “The C Word” so this is no way an endorsement. I have watched “The L Word” and enjoyed it.

In the evening, Youba, Sabou and I went to Ice Capades, not the show, an old fashioned ice cream parlor here in the Bronx, to book Sabou’s birthday party. Yes, it will be expensive, but who cares. They showed me the room – the party is already set up. They do pizza, they do paper goods, they provide a DJ who takes the kids through games and activities, they have a play room, and all of the kids get to make their own ice cream sundae. Like, literally, all I have to do is SHOW UP with Sabou, and then there’s no clean up necessary. Because I don’t trust Lupus in the least, this is not far away from home AND easy as cake. :)

Also was speaking to Youba, and we decided that we will head to the mall in the suburbs tomorrow so Sabou can play a little freely, and we can get the long awaited TV I’ve been craving. I also need to look for invitations and favors. All ice cream themed, of course. Youba was great today. When I got home from work, the house was CLEAN! Then we went out for the ice cream trip! Then when we got back to the apartment, he loaded up the stroller, and then dropped me off and he went to park the car, so that I didn’t need to walk up the four blocks uphill. YAY! I felt so loved today by him. There are moments of bliss in this crazy life. Today was one of them.

6/25/11 – Harlem Pride and a Black Power Rally

Yes, let it be said, there are days when I really do love this city. I forget that most days, so these reminders are necessary. NYS passed same sex marriage late Friday night, just in time for Harlem Pride on Saturday and the big famous Gay Pride Parade on Sunday! And in that moment, I become immediately determined to make it to Harlem on my own to be a part of the celebration, with girl in tow and rainbows to boot.

I wake up in the morning, and the legs are still weak. I do a trial run with the stroller and take Sabou on a few errands this morning: the dry cleaner, the hardware store, the beauty supply store. Yes, there is much weakness, but no pain, and I decide to push forward.

Completely covered in SPF +100 and my SPF +30 wide rim hit, I take the girl out.

So, I pack up the stroller and head to the subway for the first time in a LONG time, Sabou in tow. I carried that stroller up one flight of stairs, and it was OK. Someone helped with the second flight of stairs, which was totally awesome. In Harlem I knew that there would be elevators, so I just needed to get there.

It was great to be at Harlem Pride, see some co-workers doing their important work of advocating for safer sex practices, and fill the girl up with rainbow bracelets, which she seems to love more than my orange Lupus bracelets. Can’t blame her there.

We hit a health fair as well and she was the hit of the event with PR guys taking her photo etc. She is so damn cute. And I was asked to complete a survey. Being a PhD student, I understand the importance of data collection, and I love giving my opinion anyway. Had no idea that there was a $5 Starbucks card waiting for me at the end of this.

But, as I read the questions, I realized that they related to things like depression, difficulty at work, and social isolation. Damn. Knowing that the population they are trying to reach at this health fair was LGBT elders, which I am not, and knowing that I was just diagnosed with a chronic painful illness that is directly impacting not only my work life, but also my level of social interaction, I immediately went back up to the table, explained to them my situation, and that I may end up skewing their data. (I guess only a PhD student would say that.) They didn’t care. OK, so I filled it out honestly to the best of my ability, and got the $5 gift card.

Sabou and I continued to wander through the health fair, and at some point, the survey guy must have taken a read of mine and felt terrible and came over with a long list of referral sources for me. I explained that I am in a good place, with good doctors, and a counselor in place. I was just answering the questions as they were asked. Poor guy, now one more person worried about me. I’m OK. I’m out here doing stuff. It’s just a little different is all.

Then, call me crazy, but I saw this little playground with baby swings. My girl hasn’t swung in a LONG time. It’s one of her favorite things to do. Was it smart? I don’t know, but I couldn’t resist. Sabou got out of the stroller and swung to her heart’s content. I was frying in the heat, but refused to take off that hat. She also climbed around the playground. She can go up stairs two steps at a time! What? See we don’t have steps at home, we have an elevator in our apartment building, so she doesn’t get a lot of practice on stairs, and this just totally impressed me. It was difficult to keep up with her, or to prevent her from falling, but she did get to play which means so much.

Then it was off to Starbucks to spend that $5, and walk back to the subway. On the way to the subway, we passed a Black Power rally outside a jewelry store selling Blood Diamonds. Now, having worked in Congo, and having served so many refugees from the diamond wars in Sierra Leone, I just had to stop, so Sabou could listen and learn. And it really hit me. Here I am in Harlem again, just a few days after the confusion spell earlier in the week, in the same neighborhood, and I am grounded, I know where I am, and I am loving the energy. Yes, admit it, there are definitely days that I LOVE living in New York City. There, I said it. Maybe I need to say it more to remind myself.

A short stop to Old Navy and Sabou now has the cutest little party dress for her upcoming birthday party and it was time to go home, to meet up with Daddy for our family trip to the mall.

He had all day to sleep and rest in a quiet house and was ready to go. We get to the parking lot, and of course, the Yankee game had just ended. The bridge to the suburbs was going to be PACKED. So, we decided to head to the mall just down the street and avoid the stress of Yankee traffic. We went to Home Depot and BJs and finally got the TV!

Now, did I do too much today? That is the big question. By the time we got home, I was in headache, not as bad as earlier headaches, but bad enough to send me to bed with Sabou by 9pm, just for the relief. It’s so hard to find the balance between taking advantage of the days without pain, and not overdoing it. I guess I’ll learn over time.

“Buy Black! Don’t buy that Crap! Buy Black! Don’t buy that Crap! Black Power! Black Power! Black Power!”

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 June 26, 2011

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