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.

5/14/12 Ė Life and Death in Bamako

Lupus Awareness Fact #14: People with lupus are usually encouraged to engage in appropriate daily exercise in order to maintain muscle and bone strength. Care should be taken, however, to balance exercise with rest.

By the way, I consider chasing my daughter around ďappropriate daily exercise.Ē I also think this Lupus fact was written by someone who doesnít have Lupus.

We hear from Bamako that Sanogo is showing no signs of stepping down from power. Not sure how the Mali people feel about this, but doesnít seem hopeful for elections to take place as the 40 days of the interim president comes to a close on May 22nd.

We heard from Bamako today that my husbandís uncle had passed away. His Mom will stay with family for a little while now before heading back to Sikasso. I just feel for Youba who is in the midst of his final exams before graduation next week. Ala ka hine na. Ala ka yaafa dían ma.

5/15/12 Ė Stomach Pain

Lupus Awareness Fact #15: Systemic lupus is the most common type of lupus. Systemic lupus can affect any organ system of the body, including the heart, kidneys, lungs, blood, joints, and skin.

So, Iím having this fine day at work, no bad symptoms to report, and itís getting close to the end of the day. Iím taking tomorrow off to take Sabou and her friend to the zoo, so Iím really trying to get stuff done at the end of the day to make the return to work that much easier on Thursday.

Well, Iím working on a document when it hits, yes, itís that extreme pain in my stomach again, except this time Iím not in the safety of my home, nor sprawled out on my comfortable bed. Iím sitting at my cubicle trying to concentrate.

Do you have any idea what itís like to try to concentrate with this incredible sharp pain emanating from your tummy? OMG Ė I was like losing it, and trying to stay calm and look normal for the people in my surrounding cubicles, and I was like dying inside. Still trying to knock out this document, and I just kept making mistakes and sending out the wrong one, only to have to try to fix it again. ARGH Ė and I just want to go home, or do I? That entails three subway rides, in this amount of pain, I canít even imagine. All I know is that I need to get out of here and get home.

I finally fix the document and send out the right version, and just pack up and leave, walking as best I could with this pain in my abdomen. The subway was quite an adventure and I made sure to get seats whenever possible. Now, Iím thinking how do I take care of Sabou? But, luckily, by the time I got home, the pain had subsided, thank goodness it didnít last the many many hours that the last one did. And we just took it slow this evening, didnít go anywhere.

Itís really the unpredictability and randomness of Lupus that pisses me off the most.

5/16/12 Ė Bronx Zoo and PhD Party

Lupus Awareness Fact #16: Discoid lupus (the most common form of skin lupus) accounts for approximately 10 percent of all cases of lupus and occurs in 20 percent of those with systemic lupus.

So today was our big adventure. I took the day off work and invited Sabouís favorite friend from day care and her Mom to the Bronx Zoo. Itís free on Wednesdays, and my nephew has a class field trip there, and specifically wanted to see Sabou while he was in the Bronx. So cute, I just had to comply.

Well, my friend is from the Bronx, so she knows the buses, and while I was ready to take a cab, she knew a much cheaper way to get there. I was psyched to learn a bit more about the buses in Bronx.

Now, we are traveling with two rambunctious toddler girls who are so excited to have each other to play with all day today. Needless to say there was much laughter, and screaming and crying and the like. And, yes, we did miss our bus stop. Now, I am not so familiar with the Bronx, so I just figured we werenít there yet. But Rockaya, she knows, and she looks around, canít believe how far weíve gone, and we jump out at the next stop.

Meanwhile, my brother and his son keep texting us, asking us where we are. You know, class trips are very time limited, so we really couldnít say if weíd be able to meet up with him at this point.

Finally, another bus ride later, we make it to the zoo. We enter in the Asia section and the first thing we see are the Camel Rides! I am so excited. I havenít done the camel ride since, I donít know, elementary school? So I get three tickets, for me and the two little girls, and what fun we had. The girls were not even afraid. They loved it, and so did I.

I text my brother, heís of course in Africa, and weíre in Asia. Not Iím really not sure if weíll catch up. But, it turns out that in Asia, there are extra fees for the activities. Our whole idea was the free part of the zoo. So, we leave Asia and end up in Africa anyway. We find my brother and nephew, and that was amazing. I really donít know how it happened, except thanks to texting.

What intrigued me was Sabouís response to the Congo village. They have structures that look like the houses we can see in Mali. She kept trying to go inside, like knocking on the doors. It was adorable. I hope that somewhere in there she does remember Mali and all the special times she had there with Daddy. We make a point to show her the photos periodically so sheíll remember her family and the fun times she had.

At one point, the girls found a small patch of green grass, outside the reptile exhibit, and this is what called to them the most all day. Yes, you can tell a kid is growing up in an urban environment when the best part of the trip to the zoo has nothing to do with animals and everything to do with rolling and playing in green grass. We just sat down on the grass and let them play. It was awesome.

Later on, the girls had the chance to chase peacocks. This was a blast as well. All in all they had a great day. We took a different way home, one bus and one subway and that seemed to be a lot easier. Will remember that the next time we hit the zoo.

But Sabouís day is not over. Next is a party, a PhD party for a friend of mine who started her program the same time I did, but she actually successfully completed, unlike myself. I was excited to go to the party, but wary of how well Sabou would do having just had a big day already.

The first thing I notice when we walk in is the dissertation, the 200 some odd pages that my friend has written and defended successfully. I look at it, and there is this little twinge of, I was supposed to do that. I was supposed to finish too. But you know what, no I wasnít. My friend keeps reminding me that Sabou is my PhD. Sheís never had a child of her own, so Sabou is for both of us. Iíll never have a PhD, so hers is for me as well.

As for Sabou, well, what can I say, the girl is awesome! She basically closed the door to the living room behind me saying, ďGo away.Ē I complied, not knowing what to expect, and went and hung out and reconnected with former colleagues and had a great time. No word from Sabou, no noise or crying anywhere. My friends kept telling me to relax, everyone is taking care of her, and there are no tears and nothing has broken. I trust their judgment, their kids are much older than mine, and relax into conversation.

Slowly over time, people start coming up to me and saying things like, ďis she always this good?Ē My answer, ďSure, when sheís not with me.Ē At some point, she did start to ask for mommy and they brought her over to me. I got to hear all her adventures playing with the other little boy at the party, and sharing dinner with people. She is an amazing kid and I just love her.

The only awkward part of the party was in the reconnection with former colleagues who are all still very involved in international social work. They ask what I am doing, and I answer that Iím a government bureaucrat. Everyone is like shocked. I explain a little of my job and how much I am enjoying it. But people still find it hard to believe. It made me feel this twinge of who I was, compared to who I am. But, I am in a very different place now, with parenthood and Lupus and really, the job I have is just perfect for me at this time in my life. And while there are these moments of oh, I could still be doing things in Africa, or with refugees, itís like, you know what, I am completely satisfied with where life has brought me, full circle and using all my skills and experiences together in one job, a desk job, and that works. I can still live vicariously through my friends and the amazing work and experiences that they are having.

5/17/12 Ė More Parties to Prepare For

Lupus Awareness Fact #17: Drug-induced lupus is a lupus-like disease caused by taking specific prescription drugs. The symptoms usually disappear after these medications are stopped.

Please note the word ďusually,Ē Iíve now met folks in my on-line support group where the ďusually disappearĒ does not apply.

My folks arrived today in order to celebrate at Youbaís party that I have scheduled for tomorrow night. He just wanted a small party, so we invited my family and two of his friends. I canít wait for the fun to start. Itís wonderful to have my parents with us again. I miss them so when they leave.

5/18/12 Ė Youbaís Graduation Party

Lupus Awareness Fact #18: Women with lupus are at increased risk for loss of bone mass (osteoporosis) and are nearly five times more likely to experience a fracture.

It was very hard to concentrate at work today. The only thing on my mind was getting home and getting ready for the party. I had it catered so that would be easy, and they are delivering the food. My dad made the cheese cake and brought drinks. We are ready to go.

Everyone had a great time. Sabou got to reconnect with Bryce, who she traveled in Mali with, and of course her friend Laya. It was great to have family as well, all celebrating Youbaís accomplishments.

5/19/12 Ė Lupus Walk

Lupus Awareness Fact #19: Blood disorders such as anemia (a low number of circulating red blood cells) are common in lupus, affecting about half of all people with active disease.

After this fantastic party, my Dad, my sister, Sabou and I had to wake up early to get to the Lupus Walk. Itís a long subway ride and one never knows how that will go. Well, itís NYC, so nothing is ever easy.

The subway stopped running at the stop before the stop that we needed to get out at. No subways were going any further. What? What are we supposed to do? The only thing we could think of was to get a cab. An unexpected expense, but with a two-year old, and my dad who is a-fib, I didnít see any other way.

We make it to South Street Seaport and it is a sea of people, and hard to figure out how we are going to find the other members of my team. But, it just works out. Andi and Laya find us, and my Peace Corps buddy, whose sister also has Lupus, we just find each other.

Then the chaos started. No, this walk is not organized. I had a bad feeling at the beginning, even when I first went on the website, when the only links that worked were for donations. There was no information about the walk itself, the route, the number of miles, etc. It made me question what is this? How legitimate is this? So, I sent the organization many emails and never received any response from them. So, I attended a Lupus seminar put on by the organization and asked the staff directly about the route of the walk and the length etc. I was told, ďJust show up and weíll tell you where to go.Ē Really? Like so different from AIDS Walk and other big walks Iíve been on. But, this is my first time, so weíll just go with it.

Well, the Seaport was fine. It was obvious that we were all there for a Lupus Walk, but once we started walking and left the seaport, that was a completely different issue. See, nothing had been closed off. We were competing for limited sidewalk space, due to construction, with joggers, dog walkers, bicyclists, and tourists. I could hear people mutter under their breath as they went by, ďdamn Lupus dayĒ and other such NYC style comments. It was a completely haphazard mess and we just melted into the NYC landscape, losing sight of a way to raise Lupus awareness, for sure. I was so disappointed, and really hope that there are other organizations who are a bit more organized.

We walked to the Staten Island Ferry, and when it became clear that we really werenít part of a cohesive walk, and to prevent going too far and then having the girls start tantrumming, we stopped for ice cream at an ice cream truck and turned around and headed back to the Seaport where my dad was waiting. He walked about 20 steps and had had it. No surprise there.

Iím glad I did it. I think next year, Iíll be more picky about which Lupus Walk I do, if there even is a choice.

It was great to have the party leftovers when we got home, and to just take it easy, because tomorrow is another big day.

5/20/12 Ė Youba Graduation

Lupus Awareness Fact #20: People with lupus should eat a nutritious, well-balanced, and varied diet that contains plenty of fruits and vegetables, whole grains, and moderate amounts of fish and lean meats. Lifestyle adjustments should always include quitting smoking, as tobacco products can cause flares of lupus symptoms.

This fact makes me laugh, I mean it is relevant to everyone, not just people with Lupus.

So, we get up really early and head out to Long Island. It turns out that there are two commencement ceremonies Ė are you kidding? At the big one, they just call out the type of degree and whole groups of people stand up. ďAssociates of Applied ScienceĒ ďBachelors of ScienceĒ. Iím really excited, thinking we are getting out of here really soon. But no, once that commencement was over and done, they tell the graduates to move towards their respective departments for their school specific graduation. Oh no!

See, Iím worried because Sabou is already a wreck. She canít sit still. I mean at one point, she just stood up and ran down the aisle towards the graduates. Are you kidding me? I couldnít yell and scream like I do on crowded Bronx streets when she runs away, because itís a commencement ceremony. I have no idea what I am going to do, and Iím not fast enough to catch her. So, I pull the mean face/point the finger look and it stops her in her tracks. Complete silence, and only gestures. And I grab her and get her out of that tent as quickly as possible. And itís a huge rural campus with lots of open land. I am spending all of my time chasing her around the campus in the hot sun. I am not sure how any of this is going to go down. Itís exhausting and frustrating, but because she is so LOUD, I have to keep her out of the tents. Yes, I had my Coolibar cover up and hat, but still, I just never know what the sun will do to me.

The second ceremony was even more amusing. There were three other kids playing with the things that were holding the tent up. She loved playing with the kids and it did keep her occupied while my Dad waited patiently for Youbaís name to be called, but in the back of my mind, I just kept wondering, when is the tent coming down?

Finally itís over. My dad got some photos of Youba and we were on our way to Cheesecake Factory to celebrate with friends who live on Long Island. A lovely way to end the day. After lunch, the kids got to play on a merry-go-round and a train. Oh the joys of suburban malls. While it was completely exhausting, and I missed pretty much all of the ceremonies, I am so happy for Youba to be done.


5/21/12

Lupus Awareness Fact #21: More than 80 percent of people with systemic lupus will experience some type of nervous system complication, ranging from mild confusion or memory loss to strokes, seizures, and vision problems.

My Dad is still visiting with us, and itís been wonderful having him here. I keep telling him to stay longer, and to stay as long as he wants. But, you know, he does have a life in Rhode Island. We can just enjoy him while heís here, because tomorrow he is heading home.

I made sure Sabou said good bye to him, as she will most likely not see him tomorrow. She took it as another nite-nite I am sure. The cutest thing that theyíve been playing together is arguing about whose bed it is. Pops keeps saying itís his bed, and she keeps saying itís her bed. See, Sabouís bed becomes the guest bed when people come to stay. Thatís why she has a queen size bed. Then we take the crib mattress and place it at the foot of our bed so she has her own place to sleep when guests are staying over. Yes, I would love to have a three bedroom, believe me, but, with weird NYC housing laws, in our apartment complex, a family of three is not allowed to have three bedrooms. Annoying! So, until we move to a bigger place, Sabou and Pops can have this running joke about whose bed it is. So cute.

5/22/12 Ė Bye Bye Pop Pop Pops

Lupus Awareness Fact #22: The malar, or ďbutterflyĒ rash on the face is present in about one-third of those with systemic lupus. This flat, reddish rash across the bridge of the nose and cheeks, is often the only visible symptom of this form of lupus.

Today when Sabou and I got home, me from work and her from day care, she looked all over the apartment for Pop Pop Pops. I told her he had to go home. She didnít like that response and just kept looking for him. Dear Pops, please come back soon.

5/23/12 - Massage

Lupus Awareness Fact #23: As many as 40 percent of all people with lupus, and as many as two-thirds of all children with lupus, will develop kidney complications that require treatment.

So, today, I couldnít wait for work to finish because Iíve got my first massage scheduled. Yes, I am totally taking advantage of the reduced rate on massage for people living with Lupus. And I canít wait!

I was able to locate a massage therapist who is participating in the program and whose office is right on the subway line that I take to get home from work. YAY! Sheís just amazing and I canít wait to see the difference this makes.

The coolest part of getting a massage is when they ask you where youíre having the most issues. See, before diagnosis, I didnít really have any issues, and just wanted to feel the relaxation of getting a massage. Now I can tell her exactly where and what the pain is like and where to concentrate and where my body screams with pain, like all of it.

So, I told her about my left shoulder, the ongoing daily pain in my life, the weird stuff at the bottom of my feet lately, the usual prospects, knees, hands, hips, lower back, and then I told her all the craziness with my stomach, what I call the ring of pain and all the horrible pains Iíve had there.

She spent a lot of time on my stomach because of this. And really wants to do more. She said it feels like the diaphragm is really tight. She mentioned a particular chakra, which I donít remember right now. I guess I can ask her next time. Yes, there will be a next time. The mantra that entered my mind as she was working on me was ďI deserve this. I deserve this.Ē And you know what, I do, and Iíll be back in two weeks.

5/24/12 - Curves

Lupus Awareness Fact #24: Only 10 percent of people with lupus will have a close relative who has lupus or may develop lupus, and only five percent of children born to a mother with lupus will develop the disease.

I think the statistic changes when all auto-immune disorders are included in the mix.

Todayís big adventure was my fitness assessment at Curves. Yes, I am going back to the gym. Curves is the place I went to in Buffalo all those years ago, as well as in New Jersey. Now with Youba graduating, and his hypothesis that my Lupus would be cured if I would just work out, Iíve decided itís time. Curves is comfortable, at your own speed, and circle circuit, and no men allowed.

Well, at the fitness assessment she asked me why Iím joining now. I said, because my husband graduated and now he can pick my girl up from day care. She was shocked by my response. I think she was expecting I want to lose 40 pounds or something, but reluctantly she wrote it down.

She asked me if I thought I was obese. I said no, not at all. I kind of like my size. I donít go up, I donít go down, this is just my size. She said that I am obese. And you know what, it makes me mad, and Iím sure that, according to her numbers, and the western worldís view of how anorexic women are supposed to look healthy, and you know what, I am not. OK, I donít like my Prednisone belly at all, but really? Obese? And thatís not even why Iím joining the gym. The massage therapist said something to me about getting my muscles stronger to counteract the joint weakness, or something. I canít remember, I was so relaxed, but it sounded really profound when she said it.

I told her I am not here to lose weight, per se, though it may happen. I am here to get my muscles stronger and feel stronger to counteract any Lupus craziness that comes my way.

I am probably not her typical client at Curves. But let me tell you how good it felt to get back on those machines. I know the machines, I know the circuit, I know Curves. It was very comfortable. I knew not to push myself on this first day, but you know what, I did it! I really did it!

She helped me with the stretches at the end of the workout and I looked at her and said, ďThis time last year, there were days I could barely walk. Just look at me now.Ē Maybe over time sheíll start to get it.

5/25/12 Ė Trains, Tractors and Chickens

Lupus Awareness Fact #25: About 40 percent of people who were originally diagnosed with cutaneous lupus, which affects only the skin, will go on to develop systemic lupus that can affect any organ in the body.

Today was a very exciting day. It was our family trip to Rochester, a train ride complete with Andi and Laya and YOUBA! I am so excited to see how we do, to see if this is possible, and worth doing again and again and again.

Iím not going to sugarcoat it for you, seven hours on a train with two toddlers is not easy, but with Andi there and Youba awake some of the time, it wasnít that bad. The girls even made another friend along the way. We did it.

Once in Rochester, it was amazing to see how quickly Sabou got comfortable in Rini and Ericís house. I mean, but then, who doesnít? Their house and way to be is just amazing.

We figured out that we had not visited them in two years. Two years! Time flies and Iím so glad we made the trip. Having the chance to catch up with old friends, like 25 years old, like back to college days, is such a gift.

The other amazing thing that happened today was that Youba relaxed. Like he really relaxed and fell asleep on a lounge chair on the deck overlooking the seven acres of land, the swimming pool, the tractor and the chickens. I havenít seen him look that relaxed since our trip to Mali when we got to his Momís house in Sikasso. It was a joy to see. Now he looks like a graduate!

And Sabou had her own adventures Ė she chased chickens, drove a tractor and swam in the pool. She calls it her ďbig shower outside.Ē It was an amazing day, finished up with a Turkey dinner. Thank you, Eric.

We got big news from Smitty, and it was such a reminder of how important these friends are to me. Iíve not found the type of friendships that I found in college since, and I am grateful for them every day, even if we donít see each other, or keep in touch often (except by FB), there are bonds that are always present between us.

5/26/12 Ė Friends, Swimming, BBQ and Rooster

Lupus Awareness Fact #26: Neonatal lupus is a rare condition that affects infants of women who have lupus. With proper testing, physicians can identify most at-risk mothers, and the infant can be successfully treated before or at birth.

Another amazing day, and more relaxed napping by Youba. Another friend arrived from Buffalo, and I really donít think we had all been together like this since my wedding now almost two years ago. Just amazing. And the weather complied so it was more fun in the pool.

I think one of the nicest things was the quiet. There were no noises to speak of, no police sirens, no ambulances, no loud music or screaming from the street, nothing, except for the cock-a-doodle-doo by the rooster, and what was so nice about that is that the sound is so familiar, it brought Youba and me back to Mali. A lovely lovely weekend.

5/27/12 Ė Train ride home

Lupus Awareness Fact #27: Lupus is not contagious and cannot be ďgivenĒ to another person. Lupus is not like or related to HIV/AIDS or any other infectious disease.

I don’t really like this factoid because it reminds me of why Lupus is not on anyone’s radar, not a public health concern, and why we don’t get near the amount of funding and services that HIV does.

And today was our big train trip back to NYC. This time without Sabouís friend Laya to play with. She must have asked for Laya about a million times today. It was a long ride, and at times difficult to keep her satisfied, but we did our best. This time the Amtrak workers helped a lot, one in particular who just kept playing with and amusing her as he walked through our car throughout the trip. And the guys sitting behind us kept her fed with popcorn, her favorite thing ever. So, I guess the secret to long train rides is to sit next to really nice people, and sit in cars where nice Amtrak workers are stationed.

The neat thing that happened today, were the comments from passengers about what a happy kid she is, so free and playful, and how nice it is to see that joy emanating from her. It made me feel good as a Mom to know that at least some people appreciate her for who she is, and donít only see the loud annoying should be sitting down kid.

5/28/12 Ė Swimming at Matt Matts

Lupus Awareness Fact #28: With current methods of therapy, 80 to 90 percent of people with non-organ threatening lupus can look forward to a normal lifespan.

What this factoid is NOT telling you, is that even though we live as long as normals do, our quality of life is nowhere near what normals experience. So, we invisibly and silently sufffer in pain, our bodies attacking ourselves, for as long as others live with no such pain to speak of. I consider it Hard Time.

Yesterday, while we were on the train, my brother, who just installed a swimming pool in his backyard, was having the first pool party of the summer. A few of my siblings were there. We just couldnít make it, so we decided to go up today instead. What a joy.

The pool is great, and now Sabou has access to a Ďbig shower outsideí any time she wants this summer. Other siblings, who were at the party and just loved it, also came over for a swim, so she got to see some cousins and play with them in the pool. It was a fantastic day. My brother has stocked up on BBQ items and said that he installed this pool for this very reason, so that people could feel comfortable just coming over, relaxing, taking a dip, eating good food, and having a great summer. Heís the best.

The only Lupus thing to speak of is the damn sun. Luckily Sabou canít stay in the pool too long before she starts shivering, so Iím never in the pool for very long, and as soon as I get out, I completely cover myself with towels, Coolibar hat, and the like. But Iím telling you, I just felt like I was deep frying, like my face was in a deep fryer, even though Iím completely covered. I hate that feeling, and I donít know how else to explain it. Itís very uncomfortable, and makes me just feel irritated and scared for any effects the sun may do to my skin.

So, around 4pm, when I couldnít take it anymore, and I was imagining the horrible Memorial Day traffic back to the Bronx, I started packing up to go home, with a little girl who wanted no part of leaving. This is the part that sucks. She is not limited by sun access or anything. And yet, her time is always limited because of me.

But I also knew she was probably completely exhausted and would just fall asleep in the car, which she did. Happy to report that there was barely any traffic going home, I have no idea why, except that somehow I must have picked the absolute right time to leave.

Now I wait to see what Lupus has in store for me after three days of swimming under a hot sun…

5/29/12 Ė New GYN

Lupus Awareness Fact #29: Advancing technology and better understanding of the disease have improved pregnancy outcomes. Today, 80 percent of women with inactive lupus can have successful pregnancies.

Please note the word “inactive.” My Rheumy has told me over and over again that it’s too risky for me to have another child.

Today I am going to a new GYN, because I did not appreciate at all the quality of service with my last one, who didnít seem to know nor care about Lupus at all. And since there are only two GYNs who take my health insurance in NYC, my fingers are really crossed on this one.

Well, she was great, easy to talk to, and very open. I feel very lucky, and Iím off for my Mammo next week.

5/30/12 Ė Park Fun

Lupus Awareness Fact #30: Most people with lupus are able to continue to work. However, some people may require modifications to their work environment and schedules, such as flexible work hours, job-sharing, and telecommuting.

Let me define ‘most’ for you. I have attended support groups both in the Bronx and in Manhattan. I have only met one other person in my short tenure of Lupus diagnosis who is still working full time. Most suffer as they try to make their unpredictable amounts of pain and weird symptoms fit into what Social Security deems acceptable for disability. It is a very arduous process, usually unsuccessful, because hey, you know, we donít look sick, and sometimes we donít have symptoms, and itís one process I hope I never have to go through. I am grateful every day I am able to work.

Today after work, it was so nice out that I just had to get Sabou to the park again. So glad I did. There were even more West African ladies to meet this time. And more fun speaking Bambara. The ladies were so impressed with my Bambara that they all really encouraged me to be the one to speak Bambara to Sabou even though my husband wonít. I will try, but Iíd much rather her listen to real Bambara and not my Americanized version.

The ladies told me that they would bring me some ngomies (Malian pancakes) on Friday, along with some lemuruji (ginger drink). OMG, I hope they really do. I really would love to taste them right now, and give some to Sabou so she can remember Mali. It was an awesome day at the park, and only the beginning of whatís to come. I am loving my community and living here. Iím enjoying the chance for a bit of my Peace Corps experience that I can now share with my daughter. Itís cool to see Peace Corps get integrated into my life here in the middle of the Bronx, with my family. unpredictable amounts of pain and weird symptoms fit into what Social Security deems acceptable for disability. It is a very arduous process, usually unsuccessful, because hey, you know, we don’t look sick, and sometimes we don’t have symptoms, and it’s one process I hope I never have to go through. I am grateful every day I am able to work. unpredictable amounts of pain and weird symptoms fit into what Social Security deems acceptable for disability. It is a very arduous process, usually unsuccessful, because hey, you know, we don’t look sick, and sometimes we don’t have symptoms, and it’s one process I hope I never have to go through. I am grateful every day I am able to work.

5/31/12 Ė Second Workout

Lupus Awareness Fact #31: Today people with lupus are leading healthier lives and living longer than at any time in history, thanks to researchers who continue to discover more about the underlying science of the immune system.

If this is what Lupus is like now, I don’t even want to imagine what it used to be like. Our choices for medications are steroids, anti-malaria, chemotherapy, and now an infusion called Benlysta.

Today itís been one week since I went to Curves, and I was determined to get there again. So I packed my gym bag and went to work. It felt so normal to return to the gym and get back to working out. I think I was able to do more this time, and even walked up the three flights to get to the gym. I am proud every time I am able to work out. My goal now is to make it there more than once a week this week and see how I do.

After that, I went to a store across the street that sells SPF treated clothing. While I didnít like what I saw, and since I just ordered some from Coolibar, I checked out what else they had and left with a shirt and pants for me. Yes, me, not Sabou, who is much easier to shop for. And maybe, now that Iíll be Curves in mid-town Manhattan periodically now, I can do this, just add to my own wardrobe a little at a time. Weíll see.

This is my last installment. I feel like Iíve pretty much chronicled what itís like in the first year of getting diagnosed with a chronic illness. Now, Lupus has been pretty much integrated into my everyday life. There are everyday aches and pains, limited mobility, good days and bad days, and we just roll with it.

Itís been fun, and I hope educational for folks.


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/
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Last edited by Tyler Schuster.   Page last modified on June 18, 2012

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