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.

9/1/11 Ė Two evacuations, a funeral, and one family member with Lupus

Well, itís been quite a ride, and now that Iím home, Iíll try to summarize the past week.

Last Friday, I worked for a half-day and then went for the echocardiogram. They looked at my heart, my neck, my forehead and my eyes. I had no idea that was even possible. They looked and looked and could find nothing wrong with my heart or the blood flow to my brain. So thatís good.

We also went over my latest blood work. And I have to say that one of my complements, C3 or C4, I forget at this point, was actually normal, and thatís never happened before. So maybe this medication thing is getting things under control?

We decided to continue the taper off Prednisone. Two weeks on 4mg, and then two weeks on 3mg, and return to Rheumy at end of September.

Then I went home and got packed, so determined to get out of NYC before the city shuts itself down and Iím stuck here away from my family, and before Irene hits. It was a tough sell to Youba. He really just wanted to stay put until the storm passes and then head to RI on Monday, except that I know his work schedule, and he only has Friday and Saturday off, so thereís no way he could ride with me to RI on the Monday. I knew I only had this small window of opportunity for him to be able to accompany me to RI, and I have no way to get there on my own.

So, like any annoying wife would do, I pushed. I pushed for a Friday departure. He in no way wanted to drive, so we decided on the train. And reluctantly, he accompanied us to RI on Friday night, long before NYC shut down and long before Irene hit. This was our first evacuation.

We arrived in RI late Friday night without incident, but again, I was reminded of how I could not handle Sabou on my own in the train. It really took the two of us working together the best we could to keep her occupied and happy and not annoying anyone. She fell asleep by the end of the trip, which was a joy.

Saturday, we spent preparing my parentsí house for the storm as well as the neighborsí house. Youba was so helpful to my father, and I was so grateful he was there. The rest of the day was spent trying to figure out if we need to evacuate or not. My father wanted no part in evacuation, but I have this two-year old, and I donít want to make any unsafe decisions. Iíd rather be unnecessarily safe, then unnecessarily unsafe.

Well, they declared a mandatory evacuation of my parentsí beachside town by 6am Sunday, and I told them, we really need to evacuate. There will be road closures, and Iíd rather be in a community without road closures then stuck beachside isolated from everything, like food and water…

They listen to me, and we evacuate again to a town about 30 miles inland from the beach, to an old friend of my parents. Being with her was just perfect. We laughed, reminisced about my uncle and the old times. It was perfect for my Mom and my Dad, at this crazy time, grieving such an unexpected loss.

What was funny was that, of course, a huge tree fell in the yard next door to us, and we lost power, yes, this was in the house that we evacuated to. Well, that brought us all to much laughter, saying, well, maybe we should evacuate again to the beach.

It was around this time that we learned that NYC had completely shut down. No subways, no buses, no local train lines. There is no way to get in or out of the city. And I have never been so grateful to not be there.

Sunday we learned that Amtrak also was shut down through Monday. So, there was no way for Youba to think about getting to work on Sunday. We still had time to figure out Monday.

Sunday we also learn that power is out at the beach, but my Dad is so concerned about the possible flooding, that we decide to head back, not knowing if roads are opened or closed, or how many trees weíd have to drive around.

We made it back safely, no incident, and there was absolutely no flooding in the house, but still no power. Thatís OK, we had tons of candles, and can cook on the stove top.

Monday, they open the subways in NYC, but there are still no Amtrak or other train lines open. Youba decides to take a bus and we say goodbye to him Monday afternoon.

My first brother arrives Monday night for the wake and funeral, and two others arrive on Tuesday. Power is restored sometime on Monday or Tuesday, I canít remember now. I think Monday.

For my Mom, the trip back to the beach house is like her wake-up call. Irene was a fabulous distraction from the storm of grief about to overcome the family. Now Irene was passed and it was time to face the loss of her only sibling.

The wake was long. I canít stand for that long, so I just sat down a lot. Stood up to greet family members and family friends as necessary. Catching up with folks.

One of my motherís cousins has been keeping up with this blog and shared with me that her daughter also has Lupus, and she brought her over to me. So, she sat with me and shared her experiences over the past three years. Sjogrens, RA and Lupus. And sheís still working full-time, and raising her kids, and living her life. I was so inspired. And we figured out which side of the family this Lupus thing is coming from.

She stated that she doesnít have Lupus symptoms, never has. I guess since so many of the illnesses have such similar symptoms, and the same treatment (Prednisone and Plaquinel), it really doesnít matter which disease is causing which symptoms.

So, as I head to neurology, she is heading to urology, and our lists of doctors keep growing.

Well, we have decided since she doesnít live far, to get together, do a Bronx Zoo trip with the kids and keep in touch on a regular basis. What a wonderful gift to find a family member who understands.

Wednesday was the funeral, followed by a reception and saying goodbye to my brothers who were all heading back to NY. I was in no way ready to leave. I just didnít want to leave RI. My mom said itís because I donít have a backyard in the Bronx. I donít know, but I just didnít want to ever leave.

But Thursday, reality hits, and itís time to go home. My sister, who has been in Florida this whole time, has requested that Mom and Dad stay with her for the Labor Day. Itís a brilliant plan and will get my Mom and Dad out of town for a few days, and itís a great reason for them to drive me and Sabou home. Thank goodness, because I really donít have a plan B.

So, we drive home and now life is slowly getting back to normal. Tomorrow I go to work and the baby goes to day care.

All of this has been a great distraction from my upcoming neurology appointment. I keep having these thoughts that they wonít find anything wrong with my brain, and that I just need to learn to live with these weird and unpredictable symptoms in my eyes and head for the rest of my life. Weíll see…

9/2/11 - Back to Work and Back to Pain

Today I woke up with this back pain that I havenít felt in a long time. It stayed with me all day.

People at work could not understand why Iíd bother coming back on a Friday, right before a long weekend, but Iíve got this neurology appointment on Tuesday morning, and just felt it important to touch base before missing yet more work, and who knows how many more days off for testing Iíll need after that.

But the body was just no good today: the back pain, sometimes shooting from the shoulder, the head feeling like itís not quite screwed on right, and the legs, just hanging in there.

My director came over to check on me, I said, ďIím fine.Ē He said, ďYouíre in pain, arenít you?Ē I couldnít deny, ďYes, itís my back, but Iím OK.Ē He said, ďThatís why youíre sitting a bit sideways.Ē I hadnít noticed. So you think youíre being subtle, and then youíre just not.

I kept thinking about the fact that when I got home from work, my parents would be gone. They left for my sisterís in the morning, after I had already left for work. I miss them, I miss leaning on them for support. I hope I have the strength I need to be a good parent.

At home, the back pain continued, and it was hard to find a comfortable way to sit or relax on the couch. It was also next to impossible to pick things up off the floor when Sabou dropped them. So, a lot of things are back on the floor, even though Youba was so gracious to clean the whole house before my parents and I came home yesterday.

This weekend is the West Indian Festival in Brooklyn, complete with Kiddie Karnival and everything. Weeks ago, I planned with a friend to bring Sabou. But, Iím telling you, with the way that I am feeling today, there is no way that I can even imagine getting on that LONG subway ride to Brooklyn, to be in those crowds, that noise, under that sun. I called her and cancelled right away. She told me that was a good decision because it turns out that the festival is 30 minutes further into Brooklyn than her neighborhood, and Iíd need to take two subways. Argh. Not this time. Just not this time.

And there is a family brunch in Poughkeepsie on Sunday, that my sister has set up since my Mom and Dad will be there for the weekend. She asked if Iíd like to come. Now, liking to come and actually being able to come are two completely different questions. With the way that I am feeling, I simply responded that I prefer to say no right off the bat, because to say yes and then have to figure out all the transportation craziness is just too complicated right now, and would just lead to another disappointment. She said she understood.

I am actually looking forward to just staying home this weekend, and doing nothing. Maybe getting to the mall with Youba so he can get his school supplies for the semester, and so I can finally face Geek Squad. But thatís it. Weíll see how long that lasts.

Iím hoping that the head weirdness sticks around until Tuesday, so the neurologist can see it firsthand, but you know, with Lupus, you just never know.

9/3/11 Ė Vulnerability

Thereís something Iíve been thinking about but have been unable to find the right word for. Now, I think I have it: Vulnerability.

It all started during the hurricane. I was lying in bed, with my daughter in the pack and play next to me. Now, historically, I have always loved storms. Love their energy, their power, the whole feeling associated with them. I grew up with parents who refused to evacuate during hurricanes and would take me down to the beach to watch the boats sink and to demonstrate for me the power of God, nature, the universe, everything.

But this one just felt different. I donít know if itís because Iím sick, with this completely unpredictable condition, or because I am a parent of a very young child, or a little of both, but I just felt fear. Fear that if something were to happen to the house, that I wouldnít be able to protect my daughter. Fear that I am not strong enough as a person to carry both of us through a disaster. Vulnerability.

I think this is part of the reason why, as soon as I heard this hurricane was coming, I just wanted to get out of NYC and do anything possible to get to my parents. Now, there definitely was a big piece of this which was related to just being there for my mom in her time of loss, but there was also this big piece of just feeling like I need my Mom. I canít do this alone. I canít protect my child on my own.

And of course, nothing happened. We were completely safe the entire time. But this moment of fear and vulnerability has just stayed with me and I continue to analyze it and try to figure it out.

9/4/11 Ė Feet donít fail me now

So, itís Labor Day Weekend, a three-day weekend, and weíve got nothing, absolutely nothing planned. But since Iíve been away for the past week, I donít really mind. The only thing I needed to accomplish on Saturday was to get to the pharmacy, and I was able to pick up three medications at the same time. Joy.

Today, still nothing planned. There was an opportunity to attend a brunch about an hour and a half north of the city, but really why? And to what end? Youba would have to do the driving, both ways, and still find the energy to get to work tonight.

And Iíve been having this annoying thing in my feet and lower legs. Itís like they are tight, and achy and in pain, and though they donít look swollen to me, when I put on my sneakers, they are just completely uncomfortable, feeling tight. There have also been these ongoing headaches and fatigue. I think I took two naps today.

Luckily a friend came to visit, and thatís always a joy, the best way to go really. We never really do anything but hang out, eat, watch TV, talk and play with the baby. But itís a joy to have someone to hang out with.

Just one more day to get through until I finally get to see a neurologist. No idea what it will be like or what he will find, but information will be very welcome.

Oh wait, how could I forget? Youba and I went to Geek Squad, and they fixed all of our computers. I finally dealt with it, and everything worked out. I think it helped that the baby fell asleep in the car, so I didnít have to deal with her antics in the store, and that Youba was able to sit in the car with her while she slept. But, I did it, and now all of our computers are up and running. It only took over a month, but such is life with Lupus.

9/5/11 Ė Day at Home

Another day spent entirely at home, playing with the baby in the living room. I did take her out to do laundry, for a second until she started putting the clean laundry back into the washers that other people needed. Short lived, but cute nonetheless.

9/6/11 Ė Neurology and Therapy

So, today was my first neurology appointment. I have been to several with former clients, so I knew what to expect. He asked a lot of questions, and we went over all my symptoms. He checked me over, my eyes, my balance, my feet, etc. He, like everyone including me, canít get a handle on all my different symptoms, but has referred me for the MRI of my brain, which will take place this Friday.

A very nice thing he did was to schedule my follow-up appointment on a Saturday, so I wonít be missing more work. Thank goodness.

And I went back to therapy today. We discussed the earthquake, the hurricane, the two evacuations, the wake and the funeral, the feelings of vulnerability. Dag, it has been a busy two weeks. I told him that I am not ready to go into that sad space, and am thinking to stay with the anger and frustration, which is easier a little longer. He was completely OK with that. I think with so much of everything going on, we just do the best we can.

9/11/11 Ė Getting out of NYC - again

So, hereís a recap of the past few days. Friday morning was the morning of the MRI. So, while I was already nervous about the day, my little girl had her own freak out attack. She didnít agree with the diaper I had chosen for her, and let out this rage and anger like none other. Now, she does hit, and we have been working on that. This time was no different. As soon as she began to hit me, I picked her up to put her in timeout, like we always do, but when she got that close to my face, she attacked like a cat. Grabbing and pulling my hair, squeezing and scratching any part of my face she could. I have never been attacked by a human being before in my life. The whole scene just made me cry. I got her into timeout, closed the door and went to sit on my bed and cry. I just cried and cried. It was like I got to that sad place that my therapist has been telling me about and it all just came to a head: grief, loss, fear, mourning, low self-esteem, vulnerability, like all of it.

She was crying too in the other room. When she had calmed down a little, and all I could hear was, ďMama. MamaĒ coming from the other room, I went and got her. She just sat in my lap, hugging me so tightly, clinging like she has never done before and I just cried into her shoulder, telling her not to hit Mommy, not to hurt Mommy. But, my entire self was just broken.

So, now weíve got this MRI at noon, this terror threat that Obama announced, that has sent NYC into a frenzy of police checkpoints, etc, and this tiny adorable girl who is attacking my face. Needless to say, I did NOT want to go to work today. I did not want to show my scratched up face at work, and I was still a little nervous about having to go to the MRI all alone.

As is my usual reaction to such things, I just wanted to run away. I had this reaction, the same reaction I had to Irene, this incredible feeling of just having to get out of NYC as soon as possible, of vulnerability. Like I canít handle this alone Ė this MRI, this child. Alone. I need help. I need to get out of my apartment up to where I can be with my family and their kids where Sabou can play freely and I donít have to worry about her safety, and where I can discuss with my siblings and in-laws all of these feelings of total inadequacy in parenting, and where I donít have to be alone with these crazy Lupus things, like MRIs of brains, etc.

So, somehow I make it through work, and only one staff member asked me if I had a cat. I tried not to lose it again, and said, ďNo, I have a daughter who has a little anger problem.Ē And I walked away to hide myself behind my computer.

I also made it through the MRI, alone, which wasnít that bad. Just that the technician called the mask they put over your face so your head wonít move his ďHannibal Mask,Ē which is a terrible inference for me as I am still freaked out by scenes in those movies. And then being inside that big thing, where even though I knew I was breathing, and I could feel air all around me, it still felt like I couldnít breathe, but I did, and it was fine. I finished that and went back to work.

And I reached out. I sent an email to all five siblings, blaming my need to get out of the city on the 9/11/11 terror threats. While that may have been a piece of it, it sure did not paint the whole story. But who could say no to that?

One brother needed a babysitter desperately on Saturday, so this would work out perfectly. I got home from work, finalized plans with my brother, quickly packed a tiny bag for both Sabou and I, because I decided to attempt the train on my own, itís only an hour ride, and I know I canít handle more than a backpack with the stroller, and got ourselves on the 7:00pm train out of Harlem towards beautiful Beacon, NY, in the mountains, near the Hudson River, and where two of my brothers live right across the street from a beautiful park that is NOT surrounded by busy NYC streets, and where Sabou can run and play to her heartís content.

What an awesome weekend. We stayed from Friday to Sunday and Sabou got to play outside, roll in the grass, get dirty, climb on playground things, ride bikes, try her hand at a scooter, swing in the swings, and play play play with her cousins. And I got to take my nephew to his soccer game and out to lunch, to talk and catch up and visit with two of my brothers and their families, and not feel so all alone in my parenting travails. We went out for brunch and to a flea market. Everyone wants me to move out of the City. I do too, a lot sometimes, but my job depends upon a NYC address, residency requirement, and of course, thatís where my husband lives. :)

Yes, my husband, you may be wondering why I felt this need not to be alone when I live with my amazing husband. Except that school is back in session, and we will very rarely see each other from now until May when he graduates. While Friday and Saturday are his days off of work, they are also his major study and go to the library days. During the week, because of our different schedules, several days go by that our paths just donít cross. This all means that I am alone a lot with my child, and while millions of other mothers do a fantastic job of single parenting, I am not that strong, and I need a lot of support. I wish it werenít like that, but it is, and I do the best I can. I feel like there are natural mothers in this world, and then there are people like me, just trying to do the best I can on each given day. And may I add that the total unpredictability of Lupus does nothing to help my situation, and only makes my lack of confidence in my abilities even less.

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 16, 2011

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