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.

11/27/11 Ė The Pain Worsens and Is That Your Baby?

So yesterday morning after sorting through the laundry that I had picked up and all the items that we bought for the trip to Mali, I just got inspired and packed. Sabou is ready to go. Itís an easy pack because itís basically all of the adorable summer clothes that she wore this past summer, and her bathing suits, a bunch of diapers and baby wipes, summer shoes, towel, facecloth, toiletries, and she is ready to go. That felt so good, it also helps me to clear space in her closet for the next size up of clothing and for the winter gear. So, now itís just the waiting game until they leave, and I have a feeling that December will fly by anyway.

In the afternoon, it was back to the mall, for continued shopping, to pick up the items we didnít get yesterday. I had called my friend to see if she wouldnít mind going to the mall, and she came along. We got more stuff done, probably all of it, actually.

And the holidays, Iím still not feeling them. I mean most of the holiday stuff is really for the trip to Mali, and we need to make sure that everything works and is ready for the trip, so basically everythingís already been opened and is packed, if it pertains to Sabou anyway. And the actual day of the holiday is not feeling important to me right now in terms of gifts, but definitely in terms of eating and hanging with my family. Because Christmas will be held at my brotherís house, Samís house, in Sabouís mind, and itís so close to where I live, Iím quite certain that I can make it this year, if we all stay healthy, or in my case, healthy enough.

After cruising the mall, we decided to go to Applebeeís for dinner. Sabou started out OK, but had had more than enough and was screaming and carrying on by the end of dinner. Once I let her out of the highchair, we were screwed. There was no putting her back in, and when that girl gets freedom, she takes as much as she can and then a little more. With the pains Iím already experiencing, now Iím running through the restaurant chasing after her, and picking her up and carrying her. Well, letís just say, thatís not recommended when your muscles and body are already going crazy. I donít think it helped at all.

And, Yes, the pains are worse; they continue to get worse, more prominent. When I got home, I noticed that it is hard to find a comfortable way to sit on the couch, and lying down to sleep is the worst. There are these sharp pains across my middle from front to back. There are sharp pains randomly in the bottom of my feet and in my right hand. At one point it felt like the right hand was going to be too painful to move. I took a few Ibuprofin even though I was pretty sure that they wouldnít be able to help, but you got to feel like you can do something, you know? Luckily today after work, I already have a doctorís appointment scheduled, and Iím pretty sure weíll be upping the dose of Prednisone. No more tapers for me.

The things that are going through my mind revolve around work. The staff that I hired have never seen me with symptoms. If this continues to worsen, then theyíll have to experience that craziness first hand. Iím already missing two days of work in December for personal reasons unrelated to illness that I wonít get paid for, and if this continues to worsen, I am wondering how many more days I might have to miss, and of course, not get paid for, which then makes me wonder how long a job can put up with this stuff from an employee. And I need to just keep going, for as long as I can. I mean, itís painful to even sit here and type this, and today I have two meetings back to back that are scheduled to last all day. I have no idea how I am going to sit that long at this point without looking uncomfortable.

On a different note, at the mall, I got the same reaction that I usually get when Iím around town with Sabou, since we donít really look that much alike. ďIs that your baby?Ē and sometimes it doesnít bother me, because I can understand the question. I mean, Iíve had people ask me where I got her from. When kids ask, I donít mind at all, because theyíre kids and trying to figure stuff out. But today it was adults, and maybe itís the pain, which causes less of a tolerance factor, but it got to me, and really just bothered me. So, let me say for the record, yes, she is mine, and she is beautiful, and all of it.

11/28/11 Ė Cortisone Shot

So, today was just about the most uncomfortable day Iíve had in a long time. The ring of pain from stomach to back continued through most of it. There were random sharp pains in each foot, especially when leaving the subways and dealing with the subway stairs.

Luckily the meetings didnít take as long as I had imagined, but Oh my God, how uncomfortable. I had to keep moving in my seat trying to find the most comfortable position, which just didnít exist. I had to take stairs very slowly, and walking too.

At my cubicle I noticed that I kept forgetting what I was doing. People would come by and talk to me, and weíd have a lovely discussion, and then when theyíd leave, Iíd look at my computer screen, and nothing, just nothing would jog my memory. I had no idea what I had been doing. I tried walking around, hoping that it would trigger something, but as soon as I got up, I remembered that today is not a good day for walking, and even that didnít help. I just limped around slowly, which was as uncomfortable as sitting at my desk, wondering what I was supposed to be doing. Very frustrating, and I almost couldnít wait for it to be time to go into the next meeting, even though I knew I was just going to be uncomfortable again, trying to find the best position to sit in. I also couldnít wait to go to the doctors. There was no way I was going to forget that.

So, after work, it was off to the doctor. I really do love being his last appointment of the day, and I am finding that as we see each more and more, I mean itís like at least once a month now, heís learning my story, and I can feel the relationship solidifying, and that makes me feel good. He asked me about things I had totally forgotten about, like, I was sick a few weeks ago and he had put me on antibiotics, like my girl had been sick as well, etc. I updated him on her fevers and ear infection.

I told him about the eye doctor and the lack of glaucoma, and the no change in field of vision. I told him about the weird dry cough. I told him about the aura last week, followed by the GYN craziness, and now these growing muscle pains. I told him that I think the GYN I started going to prior to diagnosis doesnít understand anything about Lupus. He is quite sure that what I had experienced was Lupus-related, and he will refer me to a GYN who understands and who takes my insurance. And he strongly advised me to get a cortisone shot. I was so hesitant. All I could imagine was it just eating my bones. I kept asking about side-effects, and what it will do to my bones, and he kept saying, ďYou will get better really fast. You need to get better fast. And it will be great for your bones.Ē He also said that it wasnít an option, and that I really needed it. So, I got it. Weíll see what happens.

He is also increasing the Prednisone to 5mg, no surprise there. I think heís smart to do so. One thing he said was, ďWell, you were doing well there for a while.Ē And yes I was. I really was, and I need to be so thankful for those days, those months, I think. Just be grateful and do as much as you can handle on those days, because each day, you just donít know.

He brought up Benlysta again. I still told him about my hesitancy, the whole hour-long infusion thing. I told him about the two recent Lupus studies I participated in, and he is really glad that I joined the Lupus registry. I told him to expect some phone calls from them. He was glad. I told him that as soon as I get the genetic tests back from them, we can look at them together. All in all it was a great visit, I am happy to report. And in writing this, I am happy to report that I remembered to tell him everything I needed to tell him. After such a questionable day, I am quite proud of that, actually.

Yes, and he asked about the Mefloquine again. I told him to let it go, that Iím not going to Mali this year, but that my daughter and husband will be going for three weeks. He still didnít seem to understand why I wouldnít go, so I told him that itís 100 degrees there in the cold season, and thereís no way to hide from the sun, and that if anything were to happen to me, Iíd be like 5,000 miles from him, or any of my doctors, and Iím not willing to do that. I could have easily said that I donít have any time-off at work, but thatís not really why Iím not going. Maybe next year.

On the way home, I picked up a small Christmas tree at one of the bodegas turned makeshift florist. It seemed like the least I could do for this weird holiday season.

When I got home, Sabou was in a very joyful mood, just playful and happy and being her beautiful silly self. She loved the tree and kept yelling, ďTREE!Ē We Skyped with my parents and she did all of her antics for them and we all just laughed and laughed. She also had curry goat for dinner and kept calling the meat Ďchickení. I think sheís ready for Mali.

11/29/11 Ė The Shot Worked and Holiday Cards

I woke up this morning with no pain, feeling like a new person. Maybe this cortisone shot isnít so bad after all.

Work was fine; and I made sure to take the easiest subway routes this time with my co-worker. It may take longer, but it is so worth it. There was a presentation about the importance of Housing as HIV prevention. Data was shown that homelessness greatly increases the risk of becoming infected with HIV and passing it on. It also greatly lessens the chances that a person will adhere to treatment and stay in care.

The speaker went on to discuss HIV stigma as a risk factor for homelessness because people are more likely to be thrown out of their housing situations once family and friends find out their status, or they may not have family and friends to rely on in times of need.

Just recently, it was posted in one of my on-line support groups for Lupus that someone has been kicked out of her house because of Lupus. It seems that the family got tired of the crazy symptoms. So many people think that people with Lupus are just lazy and overdramatic and that the disease is just not that bad. Iíve heard from so many people through the on-line support groups that friends and family tend to give up on the person with Lupus, or donít have the strength to support such a crazy unpredictable disease.

It got me wondering if housing is prevention, not just for HIV, but also for chronic illnesses like Lupus.

Then I went to my talk therapist. What a change from last week, when I had nothing to say. I got to tell him how much my Thanksgiving sucked. How I lost it on Saturday, and how the symptoms came back. I donít know what I would do without this weekly session to just lay it all on the line and get support.

When I got home, I immediately noticed that the Christmas tree was gone from the table and that there were random ornaments splattered around the apartment. Sabou couldnít resist it I guess. Itís now prominently (not) displayed on top of our refrigerator where she canít reach it. So much for trying to deck the halls.

Also, Youba reminded me to make holiday cards. This is something I look forward to every year, and I have so much fun creating the photo card of a beautiful photo of Sabou, and yet, this year, it never even crossed my mind. I hadnít even thought about it. And itís important because we bring them to Mali, and hand them out to all the family there, as well as send them to family members and friends here in the US. We also have so much fun making cards for Youbaís family members who send us photos, or who we took photos of on our last trip, because they donít have access to the kind of technology in the village that we do here, and we have a blast watching their reaction when they see themselves on the cards. I am just grateful that he remembered. And I canít wait to order our cards soon!

12/1/11 Ė Something I Never Thought Iíd Write About

So today, my job was to attend a launch of a new mental health training program called Mental Health First Aid to see if it was appropriate for HIV service providers in NYC. It was awesome and powerful and triggered me in so many ways.

The whole goal of this training is to get knowledge of mental illnesses to the general public and all kinds of professionals, so they know what to do if they ever encounter someone who is in need. Itís built on the same model as learning the Heimlich maneuver, or CPR. To have the information, just in case.

I have to say that I think itís the first training Iíve been to with a completely nonjudgmental perspective on mental illnesses, where the goal is not to diagnose the person, but to work with the person to calm him or her down until professional help can be found, or self-help accessed. It was brilliant.

It was especially powerful to me because it seemed like every illness and disorder that he brought up had personally impacted me at some point in my life. I was in constant trigger all day, not to mention Lupus going on.

Iíll try to summarize. In the first exercise, we were given a bunch of different diseases, some physical and some mental, and our job was to line up in the front of the room from least debilitating to most debilitating. HIV was not a choice. It would have been interesting to see where that would have been placed in the continuum. Auto-immune disorders were also left out, although ďlow back painĒ made the list. I am sorry to report that Ďlow back painí is considered by the World Health Organization to be the second least debilitating condition after Gingivitis. Having just experienced excruciating back pain this past Monday, I said out loud, by accident, ďYeah, thatís because whoever made that decision has never had it.Ē At least two people sitting near me heard me and looked at me. They said, ďDo you have it?Ē I said, ďNo, I have Lupus. Itís not on the list.Ē

Then we moved into depressive disorders, like bipolar, and then suicide assessment. At some point he moved into psychosis. He spoke about delusions, hallucinations, and the like. And I was immediately transported to a time in my life, a long time ago, when I was just home from the Peace Corps, and very sick.

I was delusional, and believed that I was being followed by TV cameras all the time, like the movie ĎThe Truman Showí. It was so bad, that when I was exhausted with the Ďcamerasí, Iíd stand up wherever I was and say something like, ďDRINK COKE!Ē just to go to commercial and get the attention off me for a while. When Iíd see a Staples truck go by, Iíd sigh with relief that at least we were in a commercial for a while.

And I thought they were recording me so as to build their case against me. I was sure that they were documenting everything I did wrong or said wrong, in order to bring me to court and have me face the trial of my life. The worst part was that they never came. And every day I was in this awful place of just wanting it to be over. Just put me on the stand, condemn me, and send me to prison, for what, I had no idea, but I knew that they would think of something horrible that I did that I wouldnít be able to dispute. I had a plan once in prison, I mean Iíve spent years volunteering in prisons, I knew what I could do once inside: teach ESL and GED, facilitate Alternatives to Violence Project workshops. Yes, can you say delusional?

I was also having religious hallucinations. I just wanted to die, to have this awful life end, so I could be free of this awful world. I mean I was sleeping 23 hours a day and waking up just to go downstairs and tell my family how much I just wanted to die, and why wonít God take me?, and then going back to bed. I mean, in one of my hallucinations, I saw myself as one of a hundred angels, in a large pack, waiting for Jesus to come down and choose who heíd take. I was so sure it was me, that instead of waiting for him to come down, I flew upwards into his arms, the very same arms that threw me right back down to earth. I remember coming to from that and having to deal with the fact that, if not even Jesus wanted me, then I was completely screwed.

At first they told me it was Culture Shock and told me to get over it. Then they told me I was Schizophrenic and put me on anti-psychotics like Risperdal and Zyprexa, and I continued my downward slope. It took one of my closest friends, Patricia, to finally get me the help I needed, and get me to the psych ER. I donít know what she said to the triage nurse, but whatever it was, it got me immediately admitted. So there I was, for the 72 hours that one is allowed. Always the social worker at heart, I began facilitating ad-hoc spontaneous groups with the other patients, when I wasnít too exhausted to get out of bed. All of my colleagues were substance users, happy to have a warm bed, a shower and food for 72 hours. I had been in Al-Anon for years prior to this, so this was an issue I figured I could handle, I guess. As I said, delusional.

I also remember my visual hallucination of this absolutely gorgeous man, who spoke all the languages I speak, had traveled to all the places I had been, and who totally understood me. I remember being sent to the psychiatrist and telling her emphatically, ďDo not get rid of my psychosis. He is wonderful.Ē Oh man, she had a great response too, but itís so long ago, I canít remember now.

Doctors were coming to see me like constantly. It became a joke. All the patients knew that they were coming to see me. It was a young resident from India who figured it out. She saw through the psychosis and observed my classic physical symptoms as well, puffy face, no reflexes, shortness of breath, no balance, complete weakness and fatigue, etc. She hypothesized Hypothyroidism and ordered the TSH test. My score was about 1000 and normal is between 1 and 4. So, I started taking a medicine called Levoxyl every day, and after a year of Hell and debilitating misdiagnosis, I got back to living a completely normal life. That is, until Lupus.

I have a strong recollection of my time in that ER, of being the feared, of the staff hiding behind their glass windows hesitant to come out and visit with us patients. And I was slowly rotting away because of misdiagnosis. I didnít feel scary at all, but I still remember my medical record with the words PSYCHOTIC written in huge letters and neon highlighter on my file for years after. And every time there was a new staff member, a new resident or new nurse practitioner, I had to deal with their looks as they read the chart and then hesitantly looked me up and down. Very uncomfortable, and an experience Iíll never forget.

Well, todayís facilitator did something Iíve never seen before. He did an experiential activity to give us participants the opportunity to taste ever so slightly what itís like to have an auditory hallucination. Brilliant. We were put in groups of threes. One person was having the hallucination, one person was the hallucination and the other person was trying to hold a normal conversation with the person having the hallucination. So, how did we do this? A script was given to the person playing the hallucination of things that someone might hear. ďWhy are you talking to this person?Ē ďThis person doesnít care about you?Ē ďYou canít trust this person.Ē And then they rolled up a piece of paper, and spoke those words into the personís ear through the paper while the person was trying to have a conversation with the person not hallucinating. It was so powerful. And for the first time in my life, I opened up about having been psychotic at a point in my life. I told my group members that since I had already experienced psychosis in my life, Iíd like to give them the chance. There, I said it, just like that. Like normal as pie. And there was no reaction. Someone else agreed to play the part of the person having the hallucination. It was something that I thought Iíd never do, like this, like writing it down.

This activity was followed by a movie depicting a person having auditory hallucinations and two of his long-time neighbors trying to help him, using the tools from the program. Iím telling you, itís the first time I have ever seen this type of mental illness discussed and portrayed in such a nonjudgmental light. So inspiring.

And, then came anxiety disorders, panic disorders. He showed this slide that I will never forget. It depicted a stick person exhibiting every type of anxiety/panic symptom that they could possibly have. I mean: blurry vision, brain fog, disorganized thinking, difficulty breathing, heart palpitations, weak legs, unexplained muscle and joint pain, tremblingÖI think you get the idea. I was like, OH MY GOD! It was true enlightenment. This Ė This is why all those doctors out there who donít believe in Lupus just call us all crazy and say that itís all in our heads. Itís because we have the capacity to exhibit all these symptoms randomly over time or at the same time, and it LOOKS LIKE anxiety! I had no idea. I really had no idea. Now, at this point, I need to speak up in front of the whole group.

I let them know that I have Lupus and that these symptoms or any number of them can show at any time during any day; that these symptoms can be just part of daily life of someone with Lupus. Just like untreated Hypothyroidism, itís important for people to know that mental health symptoms do not always mean a mental illness. They can be factors of other physical problems and conditions.

And at some point during the course of the day, maybe it was during the very brief description of substance use or PTSD, I realized that on some level, and depending on how you looked at it, my life had sucked for a long time. Well, not sucked, really, but had never been easy. Like never. That was a revelation. I donít usually think of my life as sucking like that or that much, but if you only look at certain parts of it, youíd be like, oh my God, your life sucks!

And somewhere along this afternoon, I became inspired. I canít remember the last time I felt inspired. Like, I am so obsessed with this latest most annoying and painful diagnosis of mine, that I want to do something for Lupus patients. I want to, oh man, I donít know what, but all I can think to do is to call the Lupus Foundation where I go to support group and see if they need anything, if there is anything that I can do. With my social work skills, could I run a support group? Offer support to people? Educate people about Lupus? I mean, I have no idea if I would even be useful, but I want to do something. You know?

I even went up to the facilitator afterwards to thank him profusely for the training, and say that I am DEFINITELY recommending it to HIV service providers. I also thanked him for the piece on psychotic disorders and shared with him my past. He spoke about the power of having people with lived experience facilitating the training, and told me to think about attending a five-day instructor certification training. He has no idea. How could I stand for 12 hours and facilitate a training like this? There is no way my body could take it anymore. I mean, Iím dreading the next training I have coming up and that oneís only five hours. But it was nice to be encouraged. I didnít go into my limitations with Lupus with him.

And itís World AIDS Day today. So, after the training I went back to work and theyíre showing a movie in honor of World AIDS Day. I decide to go. Iíve been through enough today. Well, itís about Africa. Itís about Uganda, a place I visited in 2007, a place where they made it legal to kill gay people, and recently killed one of the most outspoken gay activists. The movie said nothing about this. It concentrated on the heterosexual HIV experience in Uganda, and it just made me really uncomfortable and unsatisfied. So many Americans have no idea what AIDS looks like in Africa, in a nation like Uganda, and by showing this movie they will still only see part of the story.

Now, by the time I got back to work, my body was already fading and a little shaky. One of the reasons I figured Iíd go see the movie was to relax for a little while. But it wasnít the case. It was hard to get comfortable in the chair and by the end of the movie my body was so weak and shaky, I couldnít even fill out the evaluation. I told the presenter my feelings about leaving out the gay Ugandan experience, especially in a film about AIDS; she told me to write it down on the evaluation. Well, I couldnít get my hands to stop shaking, so I couldnít. I left a little early when my body just couldnít take anymore.

Lupus sucks. And as these symptoms slowly become visible again, my staff members who missed the first go around are now witnessing it. I donít like that, but thereís really nothing I can do. Slowly, I made my way home on the subways, and picked up the girl from daycare, slowly I could feel my strength coming back. Writing this down, for the first time ever has been very powerful experience.

12/2/11 Ė Work Accommodations, Fun Weekend and Home Organizer

I woke up feeling fine. I Googled Lupus organizations and it seems that they are all in need of volunteers to help with fundraising events and the like. And now, reality sets in again. I already have a full-time job. I have a toddler. It takes all my energy to get her to daycare, take the three trains to work, work a full day, come home and parent her until sleep. So, realistically, where do I find time and energy to devote to volunteer activities? I have no idea. But it was worth looking. I can still be active in my on-line support groups and offer help to people that way, from the comfort of my own home.

While doing this major Google search about Lupus, I came across a document regarding accommodations at work for people with Lupus. I have saved that document, and printed myself a copy. It gives me such hope, because other people with Lupus have found a way to get the accommodations that they need in order to continue their careers. So, there is precedent. There is hope for me if my symptoms ever get that bad. Here, Iíll give you some examples of accommodations that people have gotten:

---ďA teacher with Lupus was restricted from extended periods of typing. She was having difficulty creating lesson plans. She was accommodated with speech recognition software, an alternative keyboard, and a track ball.Ē

---ďA corporate trainer with Lupus had difficulty standing and walking when giving presentations. The individual was accommodated with a scooter for getting around the work-site and a stand/lean stool to support her weight when standing.Ē

---ďA claims representative with Lupus was sensitive to fluorescent light in his office and to the radiation emitted from his computer monitor. The overhead lights were changed from fluorescent to broad spectrum by using a special filter that fit onto the existing light fixture. The individual was also accommodated with a glare guard and flicker-free monitor.Ē

These examples and more can be found in the Job Accommodation Network (JAN) Accommodation and Compliance Series: Employees with Lupus at https://askjan.org/media/downloads/LupusA&CSeries.pdf

Anyway, I am not in need of any accommodations right now, but it is so nice to know that there are options, if life ever brings me to that. Iím keeping a copy at my desk just for inspiration on bad days.

As for the weekend, Sabou is still asking to see her cousin Sam on a daily basis, so it turns out that my brother, Samís father, will be playing music at a kid event at a Barnes and Noble tomorrow morning. It couldnít be more perfect, a kid-friendly event, with Sam! So thatís the big plan for tomorrow.

Then for Sunday, a former colleague of mine, inspired by my blog, so yes, I do have one at least one follower :), would like to get together and watch Sabou if necessary. So, we are going to go to see the tree at Rockefeller Center, (because ever since the Christmas lighting display on Wednesday, and now that the networks are showing the tree like every day, Sabou keeps pointing at the TV screen and yelling, ďMama, TREE!Ē) see the Christmas window displays, and then hit St. Patrickís Cathedral. It will be a great dry-run for when my parents are here for New Yearís. As Sabou gets to know her and feel comfortable, then we can consider Mommy having some alone time. Iím so psyched to see her, and to see how this plays out.

Oh, and did I tell you? I have hired a Home Organizer to come and help me out while Youba and Sabou are in Mali. She is going to help me take charge of this completely disorganized train wreck I call home and get it organized. She has also located a housekeeper in the Bronx who can help with upkeep after the apartment has been transformed. I am so excited and nervous at the same time. The current state of my apartment is embarrassing. But, she reassured me, donít change anything because she needs to see the reality of what Iím dealing with. And I told her about Lupus and she is even OK if a lot of the physical work has to come from her. I went to several websites, and hers just made me cry. She had before and after photos of peopleís living rooms, and a section called ďwhen to hire a professional.Ē I was so moved, I just emailed her at that moment. Unlike the cleaning companies and grocery delivery services that I tried to contact this past spring when my hands and body parts werenít working, she actually responded within hours, she doesnít care that I live in a low income neighborhood in the Bronx, and we already have an appointment scheduled for January 7th. There is hope again.

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 December 07, 2011

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