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.

8/21/11 Ė Bad Mood becomes Bad Day

So, Sabou woke up this Sunday with a low grade fever of 99.6. There was no way she could go to the party. Youba informed me that heíd been up with her all night, because sheíd wake up crying every half hour. I didnít even hear her.

We were stuck home all day, and that just set me off into a bad mood spiral. Like, nothing could go right. I donít know what to do when these bad moods hit, itís like they are uncontrollable, like my hand was when it was shaking uncontrollably. And the sad thing is that when Sabou gets annoying, because sheís a toddler not because sheís really annoying, that makes it worse. I find myself losing my patience with her even quicker. Which then makes me upset, when I see what a bad parent I am being, thus adding to the bad mood. Itís terrible. I canít wait to go to the Rheumatologist tomorrow, and then therapy on Tuesday. Youba is trying to work early, but I keep reminding him that I need my Monday and Tuesday nights, for doctors and therapy. Hopefully he gets it.

Like parenting is so hard, and then this chronic illness gets in the way. Iím not blaming my bad mood on Lupus, but something has to be done. I can get so mad so quickly, and then just get stuck there. Itís awful.

I guess the Lupus link is just another wave of things I canít control. I canít control when Iíll have a good day. I canít control the fact that I canít drive long distances for fear of eye weirdness and dizziness. I canít control the fact that I canít figure out how to travel with the baby without another adult. I canít control when the symptoms will show up and which ones they will be. I just feel so completely the opposite of independent, which is not a way I usually live my life.

The spiral is somewhat equivalent to housework, which is another cause of my bad moods. I canít keep up with it, and then I judge myself for it, and then I finally clean it and then within seconds the house looks like I never did anything, because Sabou is trying so hard to help and redecorates the rooms with her toys and random other items like diapers, and as soon as the dishes are clean, new dishes fill up the sink, like nothing happened.

And I write this and all of it seems so petty, like someone needs to just shake me, tell me to grow up, get over it, and move on, which then adds to my bad mood, because somehow I just canít.

One thing I did accomplish yesterday, was finally facing my computer after bringing it in to Geek Squad and having a terrible experience there. Iíve been relying on my old computer, which sucks, and havenít had the strength to walk back into Geek Squad to get things taken care of. Yes, this is all linked to my uncontrollable bad moods.

So, I finally re-install Microsoft Office 2007 into the Ďnewí computer, the one that just died, that Geek Squad supposedly installed a brand new hard drive, and it was glorious, like working on a fast, brand new computer. It was almost joyous.

Then, I get up this morning to do this journal entry, and the screen is blank. Black. With a little cursor blinking in the upper left hand corner, and the computer isnít doing anything, and this is the one with the Ďnewí hard drive. Pissed off again? Uh, yeah.

So, I reconnect the old computer, and canít get any internet service, so I have no idea when Iíll be able to post this ridiculous entry. And since today is the doctor and tomorrow is therapy, I really canít do anything about any of this until at least Wednesday, but then Iíll really have to wait until I have the strength to face them again, without feeling like a ripped off-victim, which sets my mood spiraling.

Oh yeah, and Sabou was fine all day. No problems. She was playing and dancing and singing and telling stories all day. She has had no fever and no nose problems all day. I guess after all this, she probably could have gone to the party? Just need to NOT go there.

Yes, itís one of these days. Ever have one of these days? I wish I could say I didnít.

8/22/11 Ė Rheumatologist Ė Neurologist Ė Dietician

Sabou slept all night and woke up just fine. I immediately apologized to her for being in such a bad mood the day before. I have no idea what she understands at this age, but it just felt important for me to do this for me.

So, I had Rheumatology today, and I told him everything. I told him about the auras continuing despite the Prednisone taper. I told him about the tremor in my hand, the uncontrollable shakiness. I told him about the whole world looking like itís moving towards the right while I was driving. I remembered all of them, and I couldnít wait to tell him.

He gave out a long sigh. I said, ďDid you have a long day?Ē He looked at me and said, ďWhat are we going to do with you?Ē

I told him I was ready to see a neurologist, or a neuro-ophthamologist if he thought that was best.

He said, and I quote, ďMaybe youíre just having seizures.Ē That made me laugh because I wouldnít have thought to put the words JUST and SEIZURE in the same sentence. But, thatís why I like this guy. Through all the craziness, he is able to make me laugh.

They weighed me. Thank goodness because I feel SO big right now. I have gained 7 pounds. He said that Iím supposed to be getting smaller. He asked me what Iím doing. I said, ďI eat when Iím hungry.Ē He wants me to work with a dietician. I donít blame him. I think I dread that appointment more than the neurologist. I do love my food so. I didnít take the referral name for that one.

He said I might be retaining water. Donít know what to do about that.

So, heís got me on a 24-hour heart monitor, thereís a button I need to push every three hours, and it makes this loud annoying noise for about a minute when you push it, and I have to go to work today, to our open cubicle environment, and Iím having lunch with my boss and my bossís boss today. Should be an amusing interesting day.

Then I go back to his office on Friday afternoon, during the work day (sigh) for an Echocardiogram. And he wants me to get an EEG and an MRI.

Also, I got my blood and urine results. Here are the abnormals:

C3 Ė low and C4 Ė low Ė these mean Lupus is still active

Epithelial Ė Moderate; Bacteria Ė Few; Calcium Oxalate Ė few - No idea what this means, but he asked about family history of kidney stones.

I got an appointment with the Neurologist for September 6th, his first appointment. Must be on vacation. I donít care, I googled him and it seems that he does Neuro-muscular issues and Neurology. I think heíll be great. No Ophthamology, but I have a great doc for that already.

Never a dull moment.

8/23/11 Ė Earthquake Ė Therapy Ė Water Damage

I spend the morning trying to figure out where I can go to press the heart monitor as Iím supposed to do every three hours, since I work in an open cubicle environment and the monitor makes a terrible noise. I find a small conference room, close the door and do my thing. I plan the next one to happen over lunch and press it near subways and crowded streets so that no one can hear it. Then itís afternoon.

So, Iím on a conference call when the quake hits NYC and shakes our whole building, like twice. At first Iím like, oh man, now what is the Lupus doing to me, and I ignore it, I mean Iím on a phone call. Then the second one, and now Iím looking around and seeing people freaking out, packing up and wanting to leave.

My first reaction was like total relief. You mean this tremor wasnít me? This wasnít Lupus? Iím not alone in this tremor? And it felt so good, and I felt no fear. I mean the shakes didnít even make anything fall over. I kept thinking, and Iíve never lived in CA, but that if this little shake had happened in CA, there is no way that work would have even been disrupted. There is absolutely no way the building would have been evacuated. But people were FREAKED out.

When we got the official word to evacuate and that we were not allowed to take the elevators; thatís when I started my personal FREAK OUT. I know that there is absolutely no way that I can feasibly walk down 21 flights of stairs. Had a little panic attack I did, and I in no way wanted to enter that stairwell. But, sometimes you have no choice.

And remember, Iím on the heart monitor today, and Iím supposed to press the button every time that I feel something abnormal. Well, me walking down 21 flights of stairs is about as abnormal for me as weíre going to get. I must have pressed that button about three times on my way down.

The most frustrating thing was that I knew I couldnít go fast. I had no idea when my legs were just going to buckle beneath me. I mean they buckle when Iíve been driving for more than one hour. I grabbed the railing and slowly made my way down. But, you know, people get impatient. Some started saying to me that we need to be moving faster. I just looked at them and said, ďI have Lupus. Go around me!Ē

One co-worker stayed with me the whole time. Walking behind me. A random woman I donít know, and still donít know even her name, asked me what was wrong and if she could help. The only words I could find were, ďI have Lupus. I have a heart monitor.Ē So, with her help, I slowly made it down the 21 flights. Each landing, when you have to turn to get to the next set of stairs, I just got more and more dizzy and held on to walls and railings and her as tight as I could

Once down, the security guys could see that I was having trouble and offered me a chair. There were four of us in chairs. I kept silently wondering what everyone elseís condition was.

So something I learned today is that in the case of a real emergency, I am never getting out of that building in time. I wonít make it. And today was the first time in my life that I felt disabled. That maybe I am disabled. That maybe I am too much of a burden to be at work. And yet, I LOVE my job. It keeps me sane and feeling normal.

Once down and sitting peacefully at security, I press the button again. You know what? I think I broke it, or the 21 flights broke it. The monitor is not working. I have no idea when it stopped working, but I tell you, itís not working. So there you go. So much for technology.

After work was therapy, and man did I need that. We spoke about my experience with the earthquake, but mostly I wanted to talk about my bad mood problem. He said that Iím probably covering up feelings of sadness and disappointment with easier feelings like irritation and anger. I bet heís right. If I begin to delve into the sadness and disappointment due to limitations I suddenly have in my life because of Lupus, like ouch. It is easier to just be pissed off about it. He recommends deep breaths when the irritation starts then see where it takes me. And in that moment he said that, inside I was like, I know this. I trained people in this post 9/11. Iíve worked with trauma survivors etc. etc. but somehow when itís you, you donít really KNOW anything because youíre just lost in it all. I know Iím in the right place and doing the right thing by going to see him weekly.

When I got home, I noticed that there was water damage in the ceiling in the living room and all over the bathroom. While I was dealing with the fake emergency at work, my husband was dealing with water leaking in from the family above us on the 6th floor who were doing dishes. Youba was told that the water reached down to the 3rd floor. Damn. I looked at him and said, ďSo then maybe we will be moving at the end of this lease?Ē I mean this canít be good for any of us, but especially Sabou. And the building owners talk a good game but never really do anything they say theyíre going to, and really, what is their motivation, because when/if we move out, they can get the next unknowing tenant to pay even more rent. They win either way. Itís exhausting to think about moving though, and weíre months away from having to make that decision, which is good.

What a crazy day. I have no idea what to expect from my body tomorrow and told my co-worker, the one who stayed with me, not to be surprised if I donít make it to work tomorrow. I passed out asleep at 8:30pm.

8/24/11 Ė Reconnecting and Nice News

Well, the legs are aching as are the shoulders, but when is that not the case? I am surprised that there are not more ramifications from the stairwell fiasco yesterday, but then thatís Lupus for you, completely unpredictable.

The first thing I learned this morning is that there are evacuation chairs available that we could have used yesterday, if we had known. This was NOT discussed at our fire drill and I brought that up to our office manager. I also learned that there are lists that you can get your name on so that security and the emergency wardens know who needs help getting down the stairs. That would have come in handy yesterday, for real. So, I requested to have my name put on the list, and weíll see what happens next time.

One exciting thing that happened is that one of my on-line support groups for people Working with Chronic Illnesses has asked me to serve as Group Leader, which I am thrilled to do. I was so skeptical of on-line support groups, being such an old-school social worker, but Iím telling you, as a full-time worker and full-time mother, nothing beats it. It is so hard for me to get to an in-person support group, and these groups are there available any time of day and night, and God knows, I am up at night. :)

I also really look forward to learning from others who have been successful at continuing to work despite their various illnesses. I am hoping to learn skills, gain knowledge and get inspired by the others in the group. It made me feel good, especially as a social worker, who is now a client.

The other amazing thing that happened today is that I got to have lunch with a dear friend who has moved to the Congo, and who I havenít seen since my wedding last year. I had lunch with her and the love of her life, who she met over there.

It was great to hear her adventures and her life in Africa, especially since I once had this lifestyle, and have no idea when it will be in my life again.

I wished my news didnít revolve so heavily on my health. Neurology, Ophthalmology, Dermatology, Rheumatology, but itís where I am. Sigh.

Her beau is from South Africa, a country Iíve not been to, and naturally I said, as I usually would pre-diagnosis, ďOh, Iíll have to go there some time.Ē But, this time, as soon as I said it, I remembered who I am now, and looked at my friend and said, ďUm, maybe I wonít ever get there.Ē She doesnít believe it. She believes that I will get this under control; that this is not forever, that my life will return to normal. My Mom also speaks with this same level of intense hope for my future. I wish I could say I share their sentiment, and that Lupus is just something else Iíll get over. But you know, somehow, I think Lupus is here for the long haul, and that I really have to learn how to live well within her boundaries.

8/25/11 Ė Shocking News

I woke up this morning feeling just awful. The legs, feet, stomach and back were aching. The head didnít seem like it was on just right. But I was determined to get to work, where I would be attending a day-long training. I had no idea how I was going to get through the training, but somehow I figured it would happen.

The trains to work were horrible. I got a seat on the local, and just didnít move until it was absolutely necessary, and I was able to get a seat on the second train as well. But what a ride. I was in total pain, and just kept putting my head in my lap, until that no longer felt good, and then tried my head up for a while. Sigh, somehow I made it, slowly worked my way up the stairs, and down the street to work.

When I got inside I remembered that the security folks were collecting a list of people who need help on the stairs in an emergency. I immediately went to security and added my name to that list and thanked them profusely for offering me a chair after the evacuation a few days ago.

Then, as Lupus sometimes does, at some point, all the achiness and pain just disappeared, and I was Ďnormalí again. And while my head was not perfect, I was able to at least grasp a few things that the presenter was saying.

And then, itís lunch break. Itís raining outside, and there is no way Iím going anywhere today. So, I sit at my desk to relax and catch up on emails. Well, my brother has emailed that Iím to call him in RI right away. My thoughts immediately go to my cousin who is in the hospital paralyzed by Tranverse Myelitis, but no, this news is not about him. My uncle suffered a massive heart attack on his boat while preparing for the hurricane. Shocking, just shocking. He died immediately, and exactly where he probably wanted to die, that boat meant everything to him. I just sat and cried and talked with my brother, my father and my mother, in that open cubicle environment where thereís nowhere to hide. Sometimes you just canít care if you make a scene.

And Iíve got the Echocardiogram tomorrow and the follow-up with the Rheumy and Iíve got to bring the heart monitor back, so I canít go anywhere right now, and then all my confused thoughts around travel pop up again. How can I get there? I canít drive. I canít handle Sabou on the train, but I HAVE to get there. If I go by train, I somehow have to be able to handle the stroller, the luggage and a car seat? Maybe I can hitch a ride with my siblings? But they live a bit far and then Iíd still have to figure out how to get to them. And I want to go right now. I donít want to wait and just be there for the wake and funeral, I want to be there for my Mom. Then Iím thinking, what if I leave Sabou in the Bronx with Youba, and ask the day care to take her overnight for a few days. I know sheís done that for other parents who work the overnight shift. Or maybe Youba can come with us to RI on Friday and just return by train when he has to, probably on Sunday, and Iíll follow, maybe with a sibling later in the week? I have no idea. Things just get so confusing when you canít drive long distances anymore and youíve got a two year old. And the hurricane is coming. So I am really motivated to travel on Friday before Irene hits on Saturday, if at all possible. But at this point, I have absolutely no idea.

Somehow I made it through the rest of the day, and the rest of the training (sort of), Iíve asked to attend another one just to be sure. Having supportive staff around is absolutely key. When I got off the phone, and had calmed down a bit, the director just came and sat down with me, listening to me, sharing with me, and helping me cope. I shared with him my upcoming health problems on top of this shocking news, and he was so supportive. I feel so blessed at this job. I really do. When I got back to my desk, my staff had left a kind note on a box of tissues for me. So cute.

When I got home, I told Youba what happened and he was as shocked as I was. He remembered all the photos we took with my uncle and Siaka, when Siaka came to stay with us for the wedding last year. We went on a lovely boat ride around Newport, RI and all the yachts, and Siaka got to drive the boat. Weíre also figuring out when and how to tell Siaka so heís not shocked if he comes back to visit next summer.

When I got home I also pulled out my calendar to see what I would be missing at work, and if there was anything I really couldnít miss, and it turns out that Iím facilitating a training on the Wednesday, which will probably be the day of the funeral. I immediately got on the phone with colleagues and friends that I have worked closely with over the years, and found someone who was willing to facilitate the training for me that day. Just amazing. I mean, I just missed the Atlanta presentation in May, and didnít want to leave this same colleague with no presenter again this time. So amazing that it will work out.

Life moves fast and you just need to keep on going, somehow. Who knows what tomorrow will bring.

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 September 02, 2011

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