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.
9/12/11 Ė hmmmmm…
So, here I am already to start to write about something that I really wanted to write about today, and I totally canít remember what it was. I bet it was really good too. If I remember, Iíll come back.
9/13/11 Ė I remember!
OK, so I did remember what I wanted to share from yesterday. I forgot to wear my hat to work and I had a lunch date planned at a restaurant pretty far from the office. By the time I did that walk both ways, my whole neck and face felt like it was burning and the left side became extremely itchy. Donít worry; I made sure not to forget my hat today.
Also, Iíd like to share how much better I feel today. I had a great therapy session, mostly about Sabouís crazy attack on Friday. The therapist just looked at me and said, ďThat seems pretty normal for a two-year old.Ē Now, the word normal in regards to that experience never ever occurred to me. He went on to discuss developmental things that I know on an intellectual level, but not when Iím in the throes of an all-out physical attack to my face by this adorable little girl. I donít know, but for some reason just hearing the word normal made me immediately feel better.
I noticed that when I got home from the session, I was able to be so cheerful and playful with Sabou and both of us laughed a lot.
I also realized today that I have not had an aura, dizziness, or the world turning to the right since August 11th. Thatís over a month now. For some reason it feels like a great accomplishment, and makes me wonder if the Prednisone was somehow connected, since Iím down to like 3mg now.
It also makes me a little more sure that they wonít find anything in the MRI, and Iíll just have to learn to face the annoying unpredictable symptoms whenever and however they pop up.
9/14/11 Ė Self Management
So, a few interesting things happened today. I am in the process of being trained to facilitate a self-management program for people newly diagnosed with HIV as part of my job. Now, being newly diagnosed myself, with a different kind of immunological disorder, Lupus, I found myself needing the workshop as much as the participants. Because we were getting trained together, I was able to be a participant and share experiences with them. It was amazing speaking about worry of disease progression, managing symptoms, having a multitude of doctors and doctor appointments, medications, etc. It was like being in a group of people who totally get it. It inspired me even more to figure out how to offer this level of support, guidance and knowledge, skills, etc. to people living with Lupus. This training lasts for two more days so maybe Iíll have even better ideas at the end of it all.
Next, I got a phone call from my neurologist. When I saw his number in my phone, my heart sank a little. You know, they only call to give you bad news, right? And Iíve been so sure since day one that they wonít find anything in my MRI.
Well, even though I was nervous, I called back, and all he wants to do is reschedule our appointment. Phew on one hand, not so good on the other, because we specifically chose the date so I wouldnít have to miss more work. Sigh. So, he was willing to give me an evening appointment next week. Now, I know they never give results over the phone, but just the fact that he is not in a rush to see me, and is willing to wait until next week makes me pretty confident that I am in the clear on this one, which is what Iíve been thinking for a while anyway. What that will mean for me in my future if the symptoms come back, I donít know. I think I just need to take this whole thing in stride and learn how to expect the completely unexpected and unpredictable every day. Sigh.
Oh man, newsflash. As I write this, I am realizing that the time he gave me is during my monthly Lupus support group. And there you have it, the Lupus Brain. And so it goes.
9/15/11 Ė Self Management Part Two
So, today was day two of the HIV Self-Management Program and we got even more into depth, and as the day wore on, I realized more and more how different the experiences of HIV and Lupus are. Now Iím really confused as to how one would create this model for Lupies.
The crux of the workshop is how choices you make can improve your health: safer sex; reduction in use of drugs and alcohol, which are both forms of HIV transmission. Also, by adhering to your meds you will physically feel better and keep your immune system healthy and strong.
So, Lupus is not contracted through either sexual contact or drugs. Lupus is genetic (I guess) and just shows up unannounced. You can take all the meds you want, but none of them ever guarantee that you will feel better, or that Lupus wonít decide to attack your organ systems anyway.
I also donít need a healthier immune system. Mine is working overtime. It doesnít care what itís attacking, something good that I need or something bad that itís supposed to attack. I need immune-suppressants.
They talked a lot about control. Things you have control over in your life. I was sitting there like, control over what? I have no control over which body part will decide not to work on any given day. I have no control over what Lupus decides to do to me next.
They talked a lot about the importance of doctors. Yet there are so few doctors who truly understand Lupus, and there are doctors who just tell their patients that itís all in their heads. Itís incredibly difficult to find good knowledgeable doctors who take Lupus seriously.
They talked about the possibility of living a long healthy life. Now, Iím pretty sure that Lupus wonít reduce my years on this earth, but I know damn sure that those years wonít be pretty no matter what I do. I feel like Lupus is not a death sentence, itís a life sentence, and itís Hard Time at that.
They talked about the difference between Fatalism and Optimism. And Iím just thinking how can I be much else than Fatalistic with this incredibly unpredictable disease who is willing to go anywhere in my body at any time and do whatever it wants? I also am not convinced that fatalism and optimism are direct opposites. I think one can be optimistic about the future living within the fatalistic belief that all is going as planned, a plan much larger than myself.
I have a lot more to think about as to whether this model translates at all. I mean, they do have a health journal, which is just awesome, and could easily be adapted. The items of building trusting relationships, having someone to vent to, the importance of strong patient provider relationship, self-assertiveness, I mean, yes, of course, these pieces would fit. Iím just going to keep thinking and thinking on it…
9/16/11 Ė Could I be back?
I had this experience today that I havenít had in what feels like a long time. Iím sitting in a meeting, with PhDs, and researchers, and community leaders and the like, and suddenly, I am having ideas, I am able to answer questions, I have input into the meeting, and they took my ideas seriously, and even thanked me for my input. It was like I was answering questions and offering up ideas that I didnít know I had, like my old self, who I used to be. Then when people came in late, I jumped up to open the door for them, make sure they had a chair, etc. Did you hear me? I jumped up, like there was no hesitancy at all, it was just what was the normal thing to do. I was shocking myself, and trying not to show it at the meeting. I missed my brain. I missed my body. I really did. I had absolutely no idea that they might come back.
Now, I am very careful not to expect that this will become normal for me, but whenever I get a gift of a day like this, I will consciously remember to enjoy it, soak it in and really be grateful.
Now, the irony of the timing of this is quite incredible really. Because just the night before, I took a huge step, I decided not to continue my PhD program, and wrote such a letter to my dissertation chair and my doctoral chair. They have not responded yet, but since receiving notice from the university that I have not paid for fall, Lupus brain, I must have forgotten, that now there is a fee on top of my already high bill, and itís just too much to pay for something that I really donít feel that I can finish.
Then, as soon as I sent the email, I listen to a voicemail from a friend offering me help with research, because she needs a research project for her own graduate program. Itís just ironic, but I think timing is everything, and thereís a reason that I didnít listen to voicemail until the email was already sent.
But I will tell you that my stress level is greatly decreased since sending off this email, like itís one huge massive thing off my plate that I no longer need to worry about. And since my job is as close to a PhD level job than Iím ever going to get, I still feel successful. I couldnít do this job without all the skills and knowledge and experiences that I had in my doctoral program. And itís all good.
Today I graduated from the Peer Facilitation program and afterwards had a long conversation with one of the trainers about adapting it. He wants to adapt it for aging, and I told him I want to adapt it for Lupus. My next plan with this is to brainstorm the idea with the lead facilitator of the Manhattan support group I attend, and see if thereís any interest at all. And who knows the future.
Then, after work, an amazing thing happened. Youba, who I havenít seen like all week, was home and willing to watch Sabou so I could go shopping at the mall. Yes, I went shopping all alone and bought stuff for me, tried stuff on, and splurged on me. Yes, the little girl got one cute pajama, but thatís so different for me, usually she gets everything and I get nothing, tonight was about me! It was sooo fun.
Now, tomorrow Youba needs to go to school like all day, and I need something to do. Iíll go crazy alone in the house with her all day, and all of my siblings have other things going on this weekend, so itís on me. Iím thinking the Childrenís Museum, or Youba suggested Central Park if itís not too cold. And weíll see…
9/17/11 Ė Awesome Day
So, knowing that Youba would be gone all day and that Fall has arrived here in NYC, and thus itís a little bit cold, I checked out the website for the Childrenís Museum of Manhattan. And, it just so happens that they have a Curious George exhibit! I looked no further and off Sabou and I went on our adventure.
First, I have to say that Sabou was awesome today. She was fun, she played well with others, and she barely cried. That changes everything.
We went to the museum and found out that today is Curious Georgeís birthday! There were related events all day Ė make a birthday hat, do a mural, and create a birthday cake collage. And one entire floor was dedicated to the one the only Curious George. Oh my God, the little girl was in heaven.
The other thing that I noticed is that she is able to do so many more things on her own now, so I donít have to be right by her side all the time, and she was able to climb things, explore things, and just have fun on her own. I think we both loved that.
But it doesnít end there. The second floor was completely dedicated to Dora, who is Sabouís next best friend after Curious George. Like this museum was made for her! She had a blast, and she was sharing with kids and taking turns. I was so proud.
After about two and a half hours in that museum, she was getting tired and started to have enough. There was a little girl that she started pushing, and I immediately got her out of that situation and we left the museum right away.
I decided that since I was on the Upper West Side, which never happens, Iíd take her to my favorite restaurant. Borgrum, a Turkish Mediterranean place, with brick oven pizza. She was so well behaved in the restaurant, I couldnít believe it. Didnít spill anything, ate like three slices of pizza, and didnít cry. She even asked for bread when the waiter was walking by. So cute.
After this wonderful lunch, we headed to Central Park to the playground that she loved when we were there with my friend a few weeks ago. What a joy to be in a playground that is completely safe, not surrounded by streets, but completely fenced off and surrounded by park land. She ran around, swung, climbed, slid, like everything. She only cried for a few moments getting back into the stroller.
Then, since it is the Upper West Side, I decided to splurge. I mean sheís being so good, and thereís this kiddie hair salon right there. I couldnít resist. Iím also so glad we went. Sabou was so good in the chair. The hairstylist put on a Dora video, placed Sabou in a fire engine, and Sabou let her spray comb and cut. It was so cute. She got a certificate for her first haircut, and they saved the hair for me.
What made me feel the best was when the hair stylist said that Iím doing a good job, and she was pleased with the products that Iím using. Wow, I question myself with her and her hair all the time. She said that just the little trim that Sabou got today should help with the daily tangles.
It was a totally successful day, and we both passed out by 8:00pm. Yes, my legs and feet are aching like no oneís business, but for a day like this, I just donít care. Loving Sabou big time today. Maybe it does get easier as she gets more independent. Weíll see if this trend continues.
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/
Back to top
Back to Beyond the Absurd: Life with Lupus