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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.
9/25/11 Ė Always an Adventure
So, knowing that Youba would again be headed to school on Saturday, I made myself and Sabou a little plan for the day. A co-worker had told me about a kid-friendly diner she had gone to that was quite loud and she thought it would be perfect for a rambunctious toddler. So, I Googled it and found the easiest one to get to Ė one right near Union Square. Now, Iím happy about that because in Union Square, one can also find a Babies R Us, and a Childrenís Place, and itís not far from the Party City that we went to when we were buying stuff for her party back in August, and maybe, just maybe they have Halloween costumes. So, off we went.
We landed in Union Square, and the first thing I notice is that the NYPD are like everywhere. Their cars are lining the roads, surrounding Union Square. I take note, but not that much, and we head north towards the diner. It was easy to find and everything my co-worker said that it would be: loud, lots of high-chairs, and very welcoming staff to kids in general. Perfect. She took her time eating, as she always does, and when she was finally full, we headed towards the childrenís shops.
Walking back towards Union Square, I notice again the NYPD like everywhere, but I am a mom on a mission to find an appropriate Halloween costume that wonít make my little girl look like a slut. Have you seen whatís out there?
Now, Childrenís Place may not have costumes, but they do have great clearance sales, so she ended up with a new outfit and a winter one-piece pajama. Off to Babies R Us. Iím not giving up. Well, Babies R Us was completely lame, and off we went again.
Now, we are walking directly through the park and all of the police. You know how they swarm together, standing in large groups, like a gang? Well, there they were. Sirens were blaring everywhere, more cars arriving, more cops congregating, Iím like, what is going on? I notice a bandstand where they seem to be getting ready to play some music, and some people hanging around waiting, but I see no sign of big crowds anywhere. I find it all very bizarre and head up 14th Street, towards 6th Avenue.
As I get closer, there seems to be a slightly large group of people chanting slogans, but itís hard to make out. There are some signs ďend the fed; occupy Wall Street; justice for Troy Davis,Ē but itís all very small and quiet and I still donít get why the cops are like everywhere. Like what are they afraid of?
On the way I take note of the Halloween Costumes stores that have sprouted everywhere as NYC plans for its big huge famous Halloween parade. And we check out Party City and a few others. We have decided on Curious George. Very Very cute. Now, no one had it in stock in her size of course, but we are on a good track. And Iím feeling like a pretty successful Mom.
So, we head back to Union Square, and I have to say that on the entire walk up 14th Street and back, there were more sirens blaring, more blocked off streets by the traffic, and more NYPD vehicles trying to get to Union Square. I still have no idea whatís going on.
When we get back to Union Square, I see that the folks are still hanging around waiting for the music to begin, so Sabou and I settle in for a bit to see whatís up. The music starts and itís an 80s tune. ďHush Hush now, Keep it down now, Voices carryĒ ďI said shut up. Shut up. Why canít you keep it downĒ ďVoices Carry.Ē Now, Iíve never thought of that song as a protest song, but there you go.
Then I notice a little street fair going on across from Union Square. So I check that out, still trying to figure out what the police are up to. Itís your average NYC street fair with lots of pashmina, funnel cakes, gyros, jewelry and the like. One stall grabbed my notice because it was CORE (Congress of Racial Equality). So, I stopped by. They had no brochures at all, couldnít be specific about their services, just a bulleted list of things on their banner. And they were offering little Sabou a stuffed animal Eagle named Eddie. I have never heard of Eddie, and all they were seeking was a donation. I remember CORE from the Civil Rights Movement, and in the wake of the execution of Troy Davis, I figure that is one issue worth donating to, so I give them a few dollars, and they give Sabou another stuffed animal Eagle, a bunch of stickers, and two coloring books, all about gun safety. Weird, but I accept.
We head back to Union Square and the swarms of cops are still there. The Free Palestine folks have shown up. They are there every Sunday from 3–5 anyway, and there was like four of them holding up their banner. With the recent request at the UN for a separate state, could that be the impetus? Still no idea as we head back.
I ask one person whatís going on and why there are so many police everywhere. He lets me know that there had been a protest earlier in the day against the execution of Troy Davis, but that he canít stay to chat, and he literally ran away.
And we stop for ice cream at a Mr. Softee and you never saw a happier girl.
When we got home, I scanned the internet for news of what went on in Union Square. There was nothing to be found on the big networks, and nothing to be found on CNN except in the I-report. It turns out that there had been a march in the streets, and about 80 people were arrested for things like disorderly conduct, resisting arrest, blocking traffic, obstructing a police vehicle, etc. I got intrigued and kept looking. Not on news websites, for sure this will not be mentioned, for it is not a Tea Party protest, but on Youtube and various alternative media spots, and local NYC spots. And what I found was completely unsettling. People had recorded on their phones and camcorders videos of police brutality: Handcuffs that were too tight and discoloring peopleís hands. People beaten to the ground, dragged across sidewalks, blood dripping from them as they went. Women being mace sprayed and herded up like cattle, all on Youtube for the world to see. They recorded the march, the chants. ďthe whole world is watchingĒ as they recorded the police activity. It was unbelievable, and we were so close to it and I had no idea. Thank goodness for lunch in a diner and a little girl who takes her time eating.
When I got my fill of that, I was checking out the stuffed animals and the coloring books, and they all state that they are provided by the National Rifle Association. Now Iím confused. Why is CORE giving out stuffed animals funded by the NRA? So thatís my next Google. It seems that the longtime chairman of CORE is a member of the NRA. The CORE website is mostly ďunder constructionĒ with nothing updated since 2008, including the annual reports and 990s. Very interesting. So, while I gave to a good cause Ė racial equality Ė in the wake of Troy Davis - I am not at this point sure exactly what they will be doing with the money, and if any of it is gun-related.
I know none of this is Lupus related, but maybe I got so caught up in the weirdness of the day I forgot about the aches and pains of everyday life. I guess the Lupus thing to add is that I didnít wake up for the day until about 11:30, and ended up taking another hour nap by the end of the day.
So, that was Saturday. On Sunday, we had a nice day planned with a former student of mine, a playground date. It was very nice and wonderful to watch Sabou have a blast on the playground and to hear all the updates on my studentís life and goals for the future. She remembers who I was prior to diagnosis, and it was a nice reminder of the difference I have made in peopleís lives.
Now my job is slowly telling people about my decision to drop out of the PhD program. I called my one student contact at Rutgers and she was so happy for me. She is close to finishing and I really hope she does. I hope they all do. I just donít know what I would do with the degree at this point, or why. Iím satisfied with the work I am doing, with getting to all my doctor appointments, and taking care of my little girl.
Tomorrow is Rheumatology. Iím hoping for more tapers off the Prednisone, permission to use my Allegra for these awful sinuses, and the next appointment with the Ophthalmologist.
And the beat goes on.
9/27/11 Ė Rheumatology Update
So, yesterday was the appointment with the Rheumatologist. He is glad that I am feeling better, and that my brain is completely normal. We decided to continue the taper off Prednisone, so I started 2mg today and will keep with that for the next three weeks, then I will alternate 1mg 2mg 1mg 2mg for a while and see how that goes. Iím feeling good, no terrible symptoms to speak of, and he didnít even order blood work this time. Why these little things make me feel so proud, I donít know.
And today, I facilitated a three-hour long training on a new computer data reporting system. Something I have never done before, you know, teach computers, but all I can say is that it felt so good and so natural to be up in front of that class. I had a great time. It was like seeing a glimpse of my former self, the little professor who still lives inside me. It was awesome.
But, I have to admit that by the end of the day, I was in pain. It was the right knee, right hip and back. I was even limping after work towards the subway. A former co-worker of mine, who I saw at a meeting, noticed my limp and asked if Iíd rather take the elevator. My answer, ďOh, donít worry about me. Iím just a mess.Ē And I trudged down those stairs, and limped towards the subway. I no longer feel guilty about taking subway seats. Sometimes, most times, I just need them.
So, hereís my hope. I hope that these little annoying pains that are showing themselves are only here because I stood for too long, and that tomorrow they will be gone so I can continue the taper. If not, well, letís just not go there.
The other medication change that we are going to try, depending of course on the success of the Prednisone taper, is to switch from the Plaquinel (hydroxochloroquine) to an anti-malarial that works in Mali called Mefloquine, the one I used all through Peace Corps, and every other time Iíve been to Africa since Peace Corps. If it works as well as the Plaquinel, then in the future, down the road, whenever I feel ready, then I can probably travel to Mali. The doctor explained that I would not want to stay on Mefloquine indefinitely, like I am the Plaquinel because itís just too expensive. My doctor seems pretty confident that Iíd be ready to go this year, but you know what, I am not sure that I am ready. I am still dealing with this lack of ability to trust my body. Iím not sure I will ever get it back.
Iíve got a wonderful support at work who is also dealing MRIs of brains, psychological changes due to unpredictable illnesses and symptoms, and somehow we sit right next to each other, and we compare notes and experiences. It is wonderful. I am so blessed.
I have one more presentation this week, but only 45 minutes, and I am really looking forward to it; another chance to experience the old me. I have to really soak in these moments and enjoy them for all they are.
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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