Beyond the Absurd: Life with Lupus

by Mary Kay Diakite, LMSW

Mary Kay Diakite, LMSW continues her work on HIV/AIDS helping agencies service clients, as well as improve programs and set policy as a government worker. Prior to this, she ran a family case management program for African immigrants living with HIV/AIDS in New York City. Mary Kay taught for five years as Adjunct Professor at both Rutgers and Monmouth University Schools of Social Work. For the last eleven years, sheís been working with refugees, immigrants, asylum seekers, survivors of torture and detainees. She has run school-based programs for traumatized refugee and immigrant children in three public school districts. After 9/11, she was recruited to work with traumatized Arab, Muslim and South Asian communities. She conducts psychological evaluations on survivors of torture who are seeking asylum and being detained at the Elizabeth Detention Center. A former Peace Corps Volunteer, she served in Mali, West Africa from 1996 to 1998. She also spent three summers conducting cross border conflict resolution workshops in the Democratic Republic of Congo and in Rwanda. She is fluent in both French and Bambara.

Editorís Note: Mary Kay Diakite (pronounced Jak-e-tay),and I met when we read our own poetry at the Burchfield-Penney Art Center in Buffalo, New York, in 1992. Last year, Mary Kay also contributed to PeaceOfMind an article on reconciliation with the people of Iraq.

3/11/12 Ė Donít bring 2-year-olds to meetings

Today I kept Sabou close to home for the majority of the day, but we needed to get to a meeting where there was going to be a babysitter. I was hopeful, need to learn to stop that.

We get to the parking lot to get the car and the poor attendant canít get it down. Itís on this lift so they can fit more cars into the lot and make more money, and no matter what he does, he canít get the lift to work. So, here I am all proud of myself, out of the house, going to a meeting and we may not be able to get in our car. Hysterical. Sometimes I am humored by the randomness of life in NYC.

But this guy is determined, and is not giving up. After about 20 minutes, he finally gets the car down and we are able to head out.

Well, we are like 20 minutes late to the meeting, and like no one is there at the moment. Sabou and I are the only ones who came. She is all over the place touching stuff, causing her toddler trouble, and thereís nothing I can do. We stay for dinner and what a fiasco. Sheís all over the place, spilling things, not wanting to sit down, wanting just to throw things out, (she loves putting things in the garbage). And they witness my girl in all her glory. Itís so uncomfortable for me. I feel like somehow they are privy to my complete lack of skill as a parent, and I hate that feeling. And again, all I can think about is getting home into the privacy of my parenting fiascos.

We do get a lot accomplished at the meeting, despite everything, and Sabou and I just stayed home for the rest of the evening.

3/12/12 Ė Blurry Eyes

Had more eye issues at work, itís really every morning now for the most part and then the blurriness goes away around lunch time. I canít remember the last time I went to see the Ophthalmologist, but maybe itís just time for a check-up.

So, even though I wasnít feeling physically great today, the eyes, the random pains, etc. one thing I did notice was this incredible happy feeling. It was like the old Mary Kay, who I remember so well, who was cheerful, silly, giddy, and just always enjoying life showed up to say hello. Like, it didnít matter what was going on, it was all OK with me. I think people at work who have never met the me pre-diagnosis, were a little confused. Some of my favorite quotes, ďWhat did you have for lunch?Ē And, yes, I did have an amazing Indian buffet complete with kheer for dessert, but upon further analysis, I think I found out why.

This morning, before work, Sabou was just not waking up, and I didnít have the heart to make her. So I let her sleep. She was still sleeping when Youba came home. I told him I really need to go to work. He walked into another room, and I left the apartment quickly and headed off to the subway. So, this one morning, where I was responsible only for me; only had to get myself ready for the day, and no parenting was involved, no struggles and no tantrums before 7:30am, and I am this new woman. It felt so good. It made me wish for more opportunities to share the parenting, and to get this giddy side of me back.

3/13/12 Ė Lupus Walk 2012

Today as we were leaving for day care, I noticed that it was raining, so I pulled out Sabouís rain coat. You never saw such a happy girl. She said, ďMama, rain?Ē I said yes. She ran into her room and grabbed her Dora umbrella, came back into the living room and said, ďMama, rain, umbrella.Ē She is putting all these concepts together now and I am impressed by her every day.

So, Iím into all of my online support groups tonight and I find out that May is Lupus awareness month and that there is going to be a Lupus walk in NYC. I immediately sign up. For the past few years Iíve been participating in the AIDS Walk NYC, but this year, as my first year with Lupus, I feel drawn to this cause, for personal reasons. Iím hoping to do some fundraising, and get people to come down and walk with me. Iíll probably need the help. :)

Hereís my homepage for anyone interested:

http://donate.lupus.org/site/TR/Walk/General?px=2136257&pg=personal&fr_id=1464

Please, join my team and walk with me, or just donate if you can.

3/14/12 Ė Sabou says, ďKnow your status!Ē

Yes, so after getting all excited about walking in the Lupus Walk, I get up today and I can barely walk. You gotta love the irony. On top of that, I have to travel to Brooklyn for work today, and I donít know Brooklyn at all. I think I got out at the wrong subway stop, call it Lupus fog, and then just kept asking people on the street where to go. Well, wherever I had to go was just far from wherever I was. OMG, I just walked slowly, I didnít really have another choice, and was very thankful that Sabou was cooperative this morning and that I was very early, because it took an extra 20 some odd minutes to make that walk.

The whole time Iím thinking and laughing at myself, really? You think youíre going to do the Lupus walk? Look at you, you canít even walk. And really, who knows? I never know on a daily basis if Iíll be able to walk normally or not. But you gotta try. You just got to do something.

Then it was off to give a presentation. Iím traveling with a few co-workers who can walk a lot faster than me. Iím getting used to that, but it is disheartening. The presentation seems to go fine and then weíre hanging out afterwards, just standing there, and I canít really stand. Itís really uncomfortable, but also feels uncomfortable to sit down when everyone else in the conversation is standing, so I just take it, and canít wait to sit down in the subway for the ride home.

Today after work, when I picked up Sabou, it was a very gorgeous day and still light out. It just didnít seem fair to bring Sabou straight from one living room to another, so I agreed to walk with her for a little while. We headed down the street to the commercial block and found ourselves at Micky Dees getting a happy meal for her.

On the way home, we passed many posters of many kinds so common in my neighborhood. Political posters for the Dominican presidential elections, random events happening in the neighborhood, and a PSA about getting an HIV test. This is the poster that Sabou is attracted to. She stops next to it and starts pointing to it saying, ďMama, picture.Ē She is not budging until I take a picture of her next to it. It was completely cracking me up because she doesnít even know that it is my work while she is at day care all day. I took some adorable photos and couldnít wait to share them at work the next day.

3/15/12 Ė Soup

At work, I had a lovely time showing folks in our testing unit the photos of Sabou next to the PSA. She is the hit at the office.

Lately, Iíve made it a goal of mine to get Sabou to walk directly home after day care, to avoid the public tantrums and the long walks up hill when she just wants to wander. Itís beginning to work. Iíve even been successful with enticing her to go check the mail in order to use the elevator instead of walking up the five flights of stairs, which is just not easy for me after a long day at work.

Today it worked. When we were safely home, in private, where she can tantrum all she wants, she kept repeating one word, one simple word, ďsoupĒ. Yes, my girl loves soup.

Now, I donít have a lot of food in the house, and I am trying to avoid going with her anywhere outside at this point, and I have absolutely no cooking skills. But, I suddenly become inspired to cook soup, something I have never ever done nor thought about.

I throw pasta and water into the pot and let it boil. I find some beef bouillon cubes and throw them and all the frozen veggies I can find in the freezer: green beans and broccoli. Throw some of Youbaís random spices in, and voila, we got soup. Am I here to tell you it was awesome, no. But I can tell you that Sabou loved it and asked for a second bowl. Dinner complete, homemade from Mom, and no trip to store was necessary. A true accomplishment.

Through the whole cooking adventure, my parents were on Skype laughing hysterically, watching it all take place, as they, more than anyone, know my lack of skill in the kitchen. They were great cheerleaders, and I think enjoyed the entertainment.

3/16/12 Ė FOOT!

So, itís been an odd week of weird aches and pains randomly moving around the body but none so severe and none staying around for very long. Then thereís today. Iím like fine all day, and working happily at my desk and I get up to go to the printer and think nothing of it.

I stand up and take one step on my left foot and OMG! Like this intense pain. I canít even put pressure on it. What is going on? I limp over to the printer, try to shake it off. Yeah, right, shake off Lupus. Ha, just thinking about that is making me laugh right now.

And there you go. I canít walk. My thoughts immediately wander to my hour long commute home on the three subways, how will I be able to do it?

Now, Iíve got a meeting to go to, in a room on the other side of the building, and I canít walk. This will be interesting. We go slow. My employees have gotten acclimated to my weird random unpredictable symptoms I guess. The big question always from them always is, ďare you OK?Ē I still donít know the proper response to that. These things just happen.

By the end of the meeting, I was walking, hesitantly, but nowhere near the pain from before. By the time I left the office, the pain was completely gone, thank goodness.

Uneventful ride home, and completely determined to get Sabou direct from day care to home with no side trip, and to get Sabou to the elevator to avoid the stairs. Success. Thank you Sabou.

Again, we stayed in and finished off the soup from yesterday, and played on the floor doing puzzles.

Long phone call with my Mom. It seems that after witnessing my trials with cooking, running with Sabou to the bathroom everytime she yelled either ďpee peeĒ or ďpoopĒ and just trying to keep up with all of it, and the housework, and being exhausted from a full day at work, my Mom has decided that I need help. Hey, at least the list is growing.

Sheís thinking I need help from 6am-8am every morning, and then 6pm-8pm every night. The validation was lovely. The feeling of lameness, like why canít I handle this was overwhelming. We checked out websites together over the phone. Do you know how expensive a service like that is? I do now. Probably not happening. She wants to think that because I have Lupus I should be entitled to these types of custodial services. Yes, I have Lupus, but I also work a full-time job, as does my husband, and we have private insurance. You have to be truly disabled to get services like that through insurance. Whatever I get, most likely I will be paying out of pocket for.

Then I just got hopeful, like it seems like thatís when being married is a plus. The other spouse is able to pitch in as well. And maybe, just maybe, Iíll get this added support I need once Youba is done with school. Hey, you never know.

3/17/12 Ė First Lupus Seminar

Itís St Patrickís Day and a bunch of my family members are marching in the NYC parade. Even thinking about being near the parade just exhausts me. I canít even stand the thought of the crowds, the alcohol, the rowdiness, etc. And Iíve got different plans anyway.

You may remember that back in October I was scheduled to speak at my very first Lupus event, and then it randomly snowed. So, they rescheduled for January, and then it randomly snowed. Well, today, today was the day. Youba is on Spring break, so heís watching Sabou all day so I can attend this event. I left before either of them woke up. I gave no specific time of when Iíd be back. This was my day. My first ever; my first attempt at bridging who I was, a conference presenter traveling the globe presenting my work, and who I am now, a Lupus Warrior trying to make the best of it.

The only thing I brought with me was the first entry in this blog Ė that initial trip to the initial Rheumatologist. The experience that has inspired me to be a better patient, to not accept bad docs, and to be my best advocate, like I have been for others for so long. After reading that, I figured the words would come. They always have in the past. And I felt like a babbling mess, starting something, not remembering where I was going, surprised at what I was saying, which felt different than what I thought I would say. And there you go, it is what it is. It was my first time, and there will probably be more.

But the other presenters were like amazing. There was a psychologist who is living with Lupus. I just wanted to ask her if she is taking new patients, but I didnít. I have her card, and I can ask her privately. This feeling like I want to cry every day, these feelings of overwhelming everything, well, I just need help with it, and to think that thereís a psychologist out there who is living with Lupus and can help on an even greater level, just inspires me.

Then there were two presenters about healthy eating. These are always difficult for me. I love the food I love. But one of the presenters is in remission from Lupus. She believes itís from changing her diet. I always get skeptical. For real. But there she was, someone who started her Lupus journey with kidney failure, to someone in remission, who has created a whole new career for herself Ė health counseling. She offered all of us at the seminar a free consultation. That terrifies me. I know sheís not going to have any good news for me about what Iím eating now compared to what I need to be eating, but there you go. Maybe once Iím in therapy again, Iíll change my world view.

The thing that annoyed me, and it always does, was that both presenters spoke like it is easy to find these organic foods in any old neighborhood, and itís not. I live in a low income neighborhood in the South Bronx. We donít even have big chain grocery stores. Heck, we donít even have C-town. We sure donít have organic quinoa anywhere around. But what we do have is Micky Dees, Dunkin, Dominos and Subway. Itís not easy to get to the Trader Joes or the Whole Foods Store that are springing up in Manhattan and Brooklyn, and who knows, maybe Queens? But for those of us in areas where not even super market chains, banks, big chain pharmacies, are interested in setting up shop, do you really think weíre going to find a health food store popping up any time soon?

And yes, there are these little fruit stands on our corners, with fruits and vegetables. Believe me, Iíve shopped at them, and the quality of the food is simply despicable. We bought corn on the cob on one of my parentsí visits and when we hulled it, it was all brown. Yes, brown, this is what they are selling my neighborhood farmerís markets. I think that people who have never lived in a forgotten neighborhood, or who do not have little children, forget that eating well and healthy and having access to good food, organic food and the like, are privileges and not a right in this country. It depends on where you are and who you are, the types of food that youíll find in your neighborhood. And with my two-year old, I really canít drag myself down to the Trader Joes or Whole Foods in Manhattan for the really expensive organic foods, because she wonít be able to handle the long subway ride and then the store. And then how do I get the groceries home?

I was so happy when one of the presenters opened up and asked her what she recommends to a Lupus patient who has no energy for cooking and the only thing available to her in her neighborhood is fast food, so thatís what she eats. She needs to give her children something, and this is the easiest way to go when sheís not well enough to cook. She brought us back to reality, and for that I was grateful.

So, yes, organic foods and healthy food are great. We all agree, but if we know this, then why donít we make this food accessible to everybody? One of the presenters actually explained why. Iíll never forget. Because one of the participants asked her, if this food that they are selling us in our food stores, are not good for us, why are they selling it? She responded. ďWeíve got the federal government whose job it is to protect us, who is the same entity responsible for making sure the food that our farmers are growing, that our manufacturers are making, get sold.Ē And therein lies the problem. A conflict of interest. Profit will always win over protection.

I spoke after this presenter, can you imagine? Miss completely not in remission, junk food junkie, etc. Feeling a little shamed? Yes, but I went up there anyway, and gave my little schpiel about finding the right doctor and not staying with a bad one, with a little plug for my dream of integrated health care for Lupus patients, and whatever else came out. Most of the other speakers had been diagnosed for some time. I think that also makes a difference. Iím so new and not quite through all the psychological stages that the psychologist took us through, and I felt it and I think it showed.

Then a young woman, who is in my FB groups was the next presenter, and built on my theme by talking about how to become your best health advocate. She was organized, on point, and I was so impressed. It was so cool to meet her, the first person Iíve met since joining the on-line groups. And sheís not far away, so we can do more meet-ups in Manhattan in the future.

Then an amazing woman got up and just told her story and let the tears flow. She was awesome. Just let it all out in a group where we had all been there at some time. Just amazing.

Then a young woman, an artist, stood up and gave a spoken word performance of her Lupus story. Talk about inspiring. She had been sitting next to me in the audience, and then to see her in her glory up in front of the group, it was just amazing. She is running a half-marathon tomorrow. Can you believe? She brought up exercise, another weak point of mine. I mean I canít even walk stairs without huffing and puffing. Embarrassing, but there she is, completely in shape, running a half-marathon, and living with Lupus.

Then they brought a Rheumatologist in to answer any Lupus medical questions and the seminar was over. My first one, I will definitely go to more. It made me feel sad, overwhelmed, and inspired and hopeful all at the same time.

And then I just hung out with my on-line Lupus buddy. We wandered down to Union Square to a true farmers market, got ourselves some healthy burritos: brown rice please. And just sat and talked and shared. It was so cool. She is amazing, she really is, and I hope we can see each other again soon.

3/18/12 Ė Erin Go Bragh

Wow, today was an awesome day. There was a St. Patrickís Day parade in a small town near where my brothers live, not too far for me to drive to. I invited a co-worker and Youba was able to come! It was great. There were no tantrums from Sabou at all, all day. I think that having Mommy and Daddy together really helps her behavior. Having other people around, such as my friend, also seems to act as a deterrent to her otherwise difficult behaviors.

Well, the weather channel said clouds, so I did NOT bring my Coolibar 30 SPF hat. Big mistake. It was hot and sunny like you canít imagine, especially for mid-March. I had a little cap on, but was definitely feeling the sun on the back of my neck. Plus the driving made my legs feel weak, and I had trouble walking to the parade viewing section.

But, as we learn as we go through this disease, we learn how to take care of ourselves. I got myself some food and water. I found places to sit on buildings that stick out at the bottom. That sounds weird, but I donít know how else to describe it. I also found places in the shade, like the driveway between two buildings where I could take a break from being in the sun. And it worked. My energy came back, my legs stopped feeling weak. I even pretended to march with Sabou up and down the driveway to the beat of the bag pipes and drums going down the street. Sheíd follow me and we had our own little parade.

So, no, I didnít see the whole parade, but you know what, I had an awesome time, mostly just knowing that Sabou was outside and playing and having fun. She was all decked out in her green, and sometimes her silly green headband of a Leprechaun hat complete with long orange braids coming down the sides. So cute.

The parade was followed by an invitation to a family St. Patricks Day party not far from the parade. Well, getting back to the car, OMG. Youba was pushing the stroller with all our stuff in it, mostly the heavy sweaters and jackets we thought weíd need never thinking itíd get up so high into the 70s. And he was far ahead of us. Iíve got this tired girl who is refusing to walk. So, I have to carry, yes CARRY her back to the car, which is very far from the parade and mostly uphill, of course. Now remember those weak legs from the first walk? Well that walk was downhill. Freaking out? Yes. Breathing heavy? Yes. Determined to get there? Totally.

At times I did put her down and entice her to run, but she never did for too long. I huffed and I puffed and we made it back to the car. And it was totally worth it. Nicest party ever.

There were kids, lots of kids everywhere, lots of swings and slides and things to play in, like play houses. Sabou was in her glory, and I got another reminder of the importance of backyards. She had such a good time playing with these kids sheíd never seen before.

The funniest thing was the kids starting calling her Dora. They told me that she told them that her name was Dora, which I highly doubt. These were all Irish American kids, (so is she) but she was the only one who looked a little different, shall we say.

Well, I told them her name is not Dora. Her name is Sabou. One girl said, and I quote, ďSabou? Thatís a weird name. You must have made it up, right?Ē

I breathed in deep and replied, ďItís a beautiful name. It comes from her Daddyís country.Ē

She said, ďOh. Sabou.Ē And all the kids starting practicing saying her name. Sabou. Sabou. Sabou.

And this little interaction, this tiny little conversation, made me so grateful for where I live. In the Bronx, no one questions my girlís name, my girlís looks, our marriage. We just fit in (well Youba and Sabou much more than me. Iím the neighborhood Gringa). But their comfort is so much more important to me than mine. And again, Iím here questioning, where is the best place to raise my family? What is the best environment for Sabou?

I know I complain about NYC and Bronx like all the time. I also know I probably wonít stop. But, I was thinking that yes, itís great to have the backyard, and yes, itís great to have the exposure she has living in such a diverse urban community. Now, I want her to have both. So, maybe instead I need to get myself a vacation home! Yes, a girl has to dream. Keep the cheap apartment in the city, and find a small place with a driveway and a yard, and a dishwasher, and a washer dryer, and all the things I donít have in the Bronx, so we can go there like I donít know, weekends? And she can play outside, etc. etc. Sheíll have access to both worlds. I have no idea how to afford this, but doesnít it just sound fun?

We got home about 6pm and just crashed for the rest of the night.

3/19/12 Ė Cornrows and Pizza Party

Today I got a text from Dogomani wondering why I hadnít called yesterday. She was planning on coming over to do Sabouís hair. I totally forgot and was too exhausted after the parade and party. So, I told her Iíd be home by 6 if sheíd like to bring the kids and Iíll get a pizza.

They did come and again, my apartment was filled with laughter and joy and kids voices. As soon as Sabou saw Dogomani, she kept pointing to her hair. She gave her a big hug. It was so cute. The kids all ate pizza, and then went to play in Sabouís messy room so Sabou could get her hair done. Well, their first reaction to the room, ďThis is messy.Ē Instead of being all embarrassed, I simply said, ďWould you like to clean it?Ē not knowing what would happen. They had so much fun going through Sabouís toys, lining up the books, moving things around, playing with the stuff as they found it. OMG it was adorable. And very difficult for Sabou who is not used to other kids having full access to her room. But she did very well.

She also did much better letting Dogomani braid her hair. She got her first cornrows and was the happiest little girl ever. The kids had so much fun playing; they kept asking when Sabou was coming to their house for a sleepover. OMG Ė like the most perfect idea ever! And Dogomani is so happy to do it. And Iím getting a new kitchen floor installed on Saturday, and the new housekeeper starting on Sunday, so itís just perfect!

Yes, Sabouís first sleepover! Dogomani will call first thing on Saturday morning, and Iíll need her to bring Sabou back by 1pm on Sunday, so we can get to the St Patricks Day parade on Long Island by 3pm. I am going to have a very restful weekend. Maybe Iíll get to make the Irish Soda Bread after all!

And then, yes, again, I start to see the good parts of living in the Bronx. I am slowly building a community of support. Even one of the parents from day care, one of Sabouís close friends, keeps trying to figure out with me how and when to do a play date. If you stay in a place, you can build a support network, it just takes time. These past few days have made me question my reasons to escape. I love that Sabou has access to families who speak Spanish and Bambara here. I donít know what is best and when I donít know what is best, I just stay put.

3/20/12 Ė Documentary

So, I may or may not have mentioned sometime last year, that I was applying to be a model for a Lupus calendar that a NYC artist was doing to raise awareness about Lupus. Well, I never heard back, and just figured they didnít like my photos, and let it go. I sent some great photos from my wedding, pre-diagnosis, and one photo of me post-diagnosis when the hair was thinning. Maybe that wasnít the way to go?

Anyway, surprise of all surprises, I heard from her today, asking me to come to an interview for a documentary that she is now working on. I was so excited, because see, itís Spring Break for Youba, so he doesnít have class this week, so he is available to pick up Sabou from daycare! If she had scheduled this any other week, there is probably no way I could have participated. Life sometimes just works out.

And I got to hang out with the woman where the meeting was held on Saturday. She has a 12-year-old, and gave me some pointers on how to handle Sabou when sheís hitting me. Hopefully Iíll find the strength to have more effective responses.

3/21/12 Ė Heavy Arms and Interview

When I woke up this morning, my hands were tingling something fierce and my arms felt like they weighed about 1000 pounds each. They were like limp and hard to move. My parents called and it was hard to hold the phone to my ear. So weird. No pain, absolutely no pain, but the weirdest sensation lately.

And here I am getting ready to do an interview for the world to see to learn about how well people with Lupus can do in life, and here I am here unable to lift my arms. Oh well, I just keep going.

Then as with all my weird morning symptoms, like the blurry eyes, over time, it just goes away. Thank goodness.

Work just seemed too long today because I was SO looking forward to the documentary interview event. I headed right there after work. What an amazing experience.

When I walked into the room, there was a large mass of Mary Kay make-up waiting for me, a make-up artist to make me look beautiful, after the wonderful complimentary massage. I felt so honored, spoiled and special at the same time.

The massage therapist was great and asked me about specific complaints. This was my first massage post-diagnosis, and the question was so much more meaningful this time around. I told her about the ongoing left shoulder thatís just a part of my life now, the right back/hip area, sciatica, and of course, the weird hand tingling and heavy arms.

She did a great job. When she did my arms, the tingling started again. She told me to track it and make sure to mention it to my doctor the next time I see him. Ten minutes later when I stood up, my arms felt so light, I felt free, like really free. It was a joy. Then off to make-up by a Mary Kay lady. You know I had to play that up, for real. And the funny thing that just today at work, we were talking about facials and other treatments and I was bragging about the two free facials Iíve gotten in my life from Mary Kay consultants just for having the name Mary Kay. They both said, please come to my party, I have to give Mary Kay a Mary Kay facial. And here I am just hours later, getting a Mary Kay make-over. I just love this stuff. I love and have always loved my name.

Then it was off for my individual interview. I think the artist was shocked that Iím not even diagnosed a year yet. I told her whatever came into my mind, but the question that got me the most was ďSo how does Lupus affect your everyday life, like with parenting for instance?Ē

I just looked at her and said, ďOh now youíre going to make me cry.Ē And I told her all the frustrations of trying to parent a toddler when you feel weak and tired and just hurt. I told her the stories of when my hands didnít work and I couldnít change her diapers, pick her up, or even pick up her bottle. I showed her how I used to have to carry things on my wrists when the hands wouldnít work and how my daughter started carrying things that way too. I told her how one of my daughterís first words was ďOuchĒ and sheíd be rubbing her shoulder like I was. It was so sad remembering all of this.

At some point she asked me what good has come from Lupus. I went completely blank. For me, there has been no good news. I donít know how many times I said that in the interview. There is no cure, so few doctors understand it, the medications are horrible, and thereís nothing you can do about it. No prevention against organ involvement later in life. No good news.

Yeah, and Iím supposed to be inspiring people to see how great you can still live your life even with a Lupus diagnosis. Oops, I guess I forgot the goal of the program.

Then, she did an amazing thing, and got a group of us together. There were four of us there at the time. A 19-year-old who was diagnosed at age 9; a 27-year-old who was diagnosed at 22; and a 62-year-old who was diagnosed in the 90s, but feels sheís had it her whole life. These women were so amazing, and I was so humbled by them.

Theyíre in school. I dropped out. Theyíre happy and hopeful. I just pretty much accept that thereís not much for me so I concentrate on my daughter. It was just incredible to be in that group of women who have been living with Lupus for SO much longer than I have. OMG. I needed this day really bad.

Somewhere in the interview we get talking about support groups and on-line support groups, and when we are dead center in the middle of this discussion, the door opens, and I cannot make this up, the woman who I met last Saturday at the Lupus seminar, who is from my on-line Lupus community, walks in the door. It was a great live example of what happens in the virtual world and how you find friends you would have never met otherwise. Just amazing. Yes, I needed this night.

And, it turns out, that one of the ladies lives right near me and has a daughter, so we are already planning play dates. And another one attends a support group much closer to me that kids are invited to, and many kids attend. Sheís getting me that information, and slowly support systems grow and develop and hope is fostered. Sabou means Hope, by the way. And NYC continues its newly acquired ability to impress me.

And tomorrow itís off to Dermatology for the thing on my back I just try not to think about.


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.

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

Last edited by Tyler Schuster.   Page last modified on March 28, 2012

Legal Information |  Designed and built by Emergency Digital. | Hosted by Steadfast Networks