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, she’s 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.

Editor’s 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.

2/14/12 – Happy Valentine’s Day and Fighting with Sabou

Lately, Sabou does not want to get up in the morning, and when I see her sleeping there so peacefully, I really don’t want to wake her up either. On the weekends, I let her sleep as long as she wants, which is usually like until 8am. That just won’t fly during the week with my hour long commute to work. It’s mornings like this that make it so hard to go to work, no matter how much I love my job, and I do. But there are these moments of completely understanding why Moms stay home. But no, need to let that thought go, because time is ticking and I really do need to get to work.

So, I think I’ll make her happy by giving her the Valentine’s gift right away. It worked, she did wake up, she liked the little stuffed animal puppy, and then it was right back down to sleep. No, this can’t be happening. I try everything. She really needs to get up and she needs to get dressed.

Getting dressed was not an option. She screamed and squirmed and pushed off everything I put near her. But I was a Mom with a mission, to get to work at a reasonable hour, and it just wasn’t happening, so I went in with all I had.

We must have fought and argued with each other for about 15 minutes straight, and I felt a bit accomplished because somehow there she was sitting quietly on the couch completely dressed and looking absolutely exhausted. We both were. I just sat down on the couch next to her, and she rested her head on me. We were both completely worn out and exhausted. I apologized to her for being angry and let her know that I don’t like to be like that way with her, and that we need to work together and she needs to listen to me. No idea what all she understood. But we sat there in each other’s arms for about 5 to 10 minutes, neither one moving. Now it’s a mere 7:30am, I’m feeling like I already had a full day of work, and my day had not yet begun. Got to work exhausted and just did the best I could.

2/15/12 – Again? Are you kidding me?

So, this morning when Sabou woke up, it was beginning to look like the same antics were going to begin again. I couldn’t believe it, and didn’t have the strength to fight her like I did yesterday. I immediately called Youba, told him what was going on, and that I couldn’t fight it today, and asked him to pick her up from day care because I have no idea what time I’ll get to work so I may have to stay late to make up the time. He agreed, thank goodness.

Every time Sabou started up I would say to her, “Do you remember yesterday? I don’t want to do what happened yesterday. Do you?” I’m not saying that this much talking to a two-year old works, I have no idea what works. I have no idea what to do on a daily basis, but she was much calmer, and we did end up getting dressed in a reasonable amount of time, with very little stress.

One thing I’ve noticed, that I don’t think I’ve mentioned here at all, is that Sabou is biting her fingernails. I mean really biting them until there is almost nothing left, and it hurts. Oh my goodness. I feel like it’s my fault and my moods and lack of parenting skills that are already having an impact on her. She is completely stressed out and doesn’t have the words yet to tell me why. I am definitely bringing this up to the pediatrician tomorrow.

2/18/12 – Pediatrician and Surprise Visits

Today was Sabou’s 30-month assessment. She passed with flying colors. Much better than how she did at the 18-month assessment. What progress she has made. I showed the pediatrician her nails, or lack thereof, and told her that I think I’m her stress. She explained that kids even that young feel stress like we do. They think about things and things bother them. That she’s seen it before even in someone as young as Sabou. She prescribed a cream for a skin issue she’s having. I’m really hoping it’s not the beginning of discoid (fingers crossed) and we were off to the pharmacy. Well, the little girl can only be good for so long. And when she started to go off the sidewalk into the parking lot where the cars were, I just freaked out. Yes, as I said, I’m her stress. I have been in so many car accidents in my day, and I know that this is my issue, but it is just terrifying to see her in car lanes, even when there are no cars, and she needs to learn to stay on the sidewalk, I mean we live in the Bronx for goodness sake, not the countryside. When she wouldn’t listen, I lost it again. I just want her safe, and I know I must have overreacted when a stranger looked at me, arguing with her on the sidewalk, her lying down on the pavement screaming at me, and me yelling at her to stay on the sidewalk. He chuckled, looked at us and said, “She takes after you, you know. You’re acting just like her.”

I just wanted to break down and cry. I just wanted to be somewhere alone, where no one could see us and comment on us. I also knew deep down that he was right, and that I really am her main cause of stress as she is for me. It was a long frustrating walk to the bus, and we finally made it home.

I was completely done, overwhelmed, frustrated with Sabou, with this whole parenting thing, with poop in the diaper, on the floor, on the toilet seat. Always alone on Saturdays, when Youba is at school. And the doorbell that I just got fixed, rings.

I run to the door to see who it is. Sabou is there right with me, pants off, poop still not completely cleaned off, and it’s Jehovahs Witnesses. It was like a breath of fresh air. I am not kidding. I told them my girl just pooped, and to give me a few minutes. If there was anything I needed at this moment, it was the company of very calm women, who are good with God.

I think they were shocked that I actually came back to the door and invited them in to my mess of an apartment. Sabou was dressed now, happy for the guests, I’m sure we both were, and we sat down on the couch.

They were so calm, so understanding, and so deliberate. It may sound crazy, and no I’m not a born again, but an intervention, any intervention, by any person would have helped my situation. They gave me a book, asked me to go down the table of contents. I near cried when I saw, “How to Make Your Family Life Happy.” So, we slowly work through two paragraphs. Simple paragraphs, easy questions, clearly defined in the paragraphs. I mean, these women are deliberate. It’s OK. I needed them or anyone at that moment to get me out of the space that I was in, that I was putting Sabou in. Seriously, divine intervention.

They left, said they’d be back in two weeks. I have no idea if they’ll really come back. I have no idea if I’ll be here to greet them, but I am so thankful that they came just at that moment.

Then, within five minutes of when they left, the doorbell rang AGAIN. OK, I haven’t had a working doorbell since I moved into this apartment 2.5 years ago. I just got inspired to get it replaced while working through my Feng Shui workbook. And here, literally days after it’s installed, it’s already calling people to my door.

This time, it’s Bryce, Youba’s co-worker who traveled to Mali and explored the country with Youba and Sabou. He was in the area, thought Youba’d be home from school by now, and just wanted to stop in.

Again, another welcome surprise guest. We talked about Mali, his impressions, and he played with Sabou. They drew pictures together. It was so cute. He didn’t stay long, probably because Youba wasn’t home, but again, so welcome was the diversion.

Then it was time to get ready for my date. Yes, my valentine’s date with Youba. I called a babysitter, Melissa, who has helped me out before and me and Youba had dinner plans in Manhattan in a restaurant overlooking Central Park.

Well, I got all dolled up, looking fabulous, or as fabulous as I can with my limited fancy dancy wardrobe, and we headed out.

OK, first of all, the restaurant did not REALLY overlook Central Park. Columbus Circle, maybe, if you were lucky to get a window table and it was on the third floor of a MALL. OMG, so not the romantic place it marketed itself to be on the website. And the menu was completely different from the menu they marketed on the website. I felt totally taken. But there we were, eating so-so food, trying to talk amidst the loud crowded restaurant, but you know what, I was on a date! No baby around. Just us. That is progress, and I will not give up. I mean this is NYC; there are tons of good eats. I just need to find them.

I asked Youba if after dinner he wanted to walk through the park a little bit. His answer was really quite sweet. “We need to go check on Sabou.” While it may have been a party pooper, I appreciated his wanting to get home to Sabou. It’s not all the time I see this side of him. And we were home by 8pm. Yes, my wild night on the town on my three day weekend.

2/19/12 – A little down

Just to let you know that somehow I am going on like a month without joint pain. Crazy, I know. But another weird thing that is going on is that I feel sad. No, don’t worry, I’m not missing the pain.

It’s Sunday. Youba doesn’t have class, and even though he works tonight, there is always this irrational thought in my mind on Sundays that maybe he’ll stay home and hang out with us. It’s never true, but somehow I still hold on to that belief. And I’m always disappointed.

He either wants to go to school, if I am staying home with Sabou, or he wants to be able to study and cook in peace, if I take her somewhere. Now, Sabou already has cabin fever, and I’m getting that pissed off feeling again, like I’ll go crazy if I stay in this small apartment with her all day, and Youba has made it sound like he really wants us to go.
So, I call one of my brothers who lives within a reasonable distance, that I am willing to drive, and no problem, they say we can come up. Sabou slept in the car, which was a godsend, and made me just want to keep driving to keep her asleep. But, I didn’t. That has backfired on me and my body before.

When we got to the new house, the new surroundings, and she had had a little nap, we were both completely new people: nice, calm, and happy to be together. We chilled out in front of the TV until she started getting comfortable in the house, and then played outside in the yard, yes, they have one. She even explored the woods behind their house and fed their dog. No, this is not the Bronx. It inspired me to bring her to a playground. When my nieces came home, I asked if one of them would like to come to a playground with Sabou and me. Luckily one said yes!

So we went to the playground. There was a little balance beam there. Now, I was a competitive gymnast for 10 years, back in the day. My niece knew this, and asked if she could see some of my stuff, asked if I could do the monkey bars, all the stuff that in my youth I absolutely LOVED to do. I could barely even hang from the bars. I kept telling her, “My arms don’t work so good anymore.” I didn’t know what to say. She even pushed me on a swing, one of my total favorites at a playground, and I near thought I would puke, complete dizziness and nausea. That ride didn’t last long.

Anyway, there was this moment of, what is wrong with me? No, I don’t seem to have many symptoms anymore, and yes, I know my body is still strong on some level because I drag that two year old up and down subways stairs in a stroller, so what is this? Oh, maybe I’m just getting older?

And I had these passing thoughts, and who knows, maybe it is society talking in my head, or House, that maybe I don’t have Lupus, I mean “it’s never Lupus,” maybe I’m just out of shape, and lazy, and just need to get back to the gym.

I haven’t joined a gym or anything, figuring the workout I get with the stroller on the subway sufficed, and really there is no time in my day for much more. But, it is on my mind. How much of my problems are Lupus and how much are really just being out of shape? It may be the lack of symptoms causing the questioning, and all I have to do is remember back to last March-June and remember that oh yeah, really, it is Lupus. And I guess I just need to be grateful for this time without pain, and not hold it against myself.

When I got home, I was exhausted, from the drive, the playground, all of it. I asked Youba if he could go pick up the laundry. His reply, “I’m busy.” Wow, all that anger that had passed during the day came right back with a fury. The only response I could think of was to get out of that house really fast. I in no way wanted to respond to him in the way that I was feeling in front of Sabou. So I quickly put my jacket on got the shopping cart and left. When I left, he was lying comfortably on the love seat, feet elevated, and the laptop was on the desk away from him. He wasn’t even looking at it. I said to Sabou, “Don’t bother Daddy, he’s busy.” And I left.

For the rest of the evening, Sabou helped me put the clothes away, and sat with me cuddling on the couch. She found a Bible song book, and surprisingly I knew some of the songs: “This little light of mine”; “Go tell it on the mountain”; “Kum Ba Yah.” So as she turned the pages, I’d start singing. When I’d get to the phrase, “let it shine, let it shine, let it shine”, she’s chime in. “Shine. Shine. Shine.” It was sooo cute.

When she was done, she closed the book. On the back of it was a picture of a church. She pointed to it and said, “Mama, what’s that?” I responded, “church.” She replied, “church.” And then pointed to it again and said, “Pray.” I was shocked, completely shocked. This girl does not go to church, like ever. I brought her to an Easter Vigil when she was an infant, but that’s about it. I didn’t even know she knew that word. She amazes me every day.

2/20/12 – Home Organizer – Take two

So, today was the long awaited, yet dreaded day, the day we took on the kitchen. I hate my kitchen. I hate the mice. I hate the floor. I hate cooking. I hate all of it. I am ashamed of my kitchen, which is why I really needed this professional to come and help me through it, like she did my closets.

I asked day care weeks ago if they’d be open on Feb. 20th. They said, “Si”. Yes, no problem. So, I brought Sabou over this morning, after giving her as much time as she needed to get ready. We went over about 8:30. Nobody was there. The day care lady answered, but said that they were closed. I was like, OMG, what am I supposed to do? They didn’t tell me they’d be closed, and when I asked, they said they’d be open. She said, “Esta bien” and let Sabou stay. Thank goodness, I really didn’t have a plan B, and she so cannot be there when the home organizer shows up. For real. I tell day care that I’ll be back as early as I can.

I get home and tell Youba. He’s like, why did you leave her there? They probably won’t take good care of her. Why didn’t you bring her home? I asked him directly, “Oh, do you want to watch her?” And I received his usual response of silence. Instead of letting it stay silent, I responded, “Yeah, I didn’t think so.” And he proceeded to go to bed.

And I scrubbed that kitchen floor for a while, moved stuff out of there that hasn’t been moved since we moved in. I was too ashamed to let her see it like that.

We worked for four hours on that kitchen, each cabinet, the silverware drawer, everything, and all of it is now organized. It was very emotional for me, and I have no idea why. Is it because I feel so inadequate in the kitchen? I don’t cook. I hate to cook and now I have this child I need to feed appropriately three times a day. At least, I know what’s in the cabinets now. I can find everything. And all the extra stuff we didn’t need is now GONE. It’s so freeing. And yes, there is a next step: the housekeeper. I definitely need help maintaining what we’ve been able to accomplish. My plan is to call the housekeeper that the home organizer recommended who lives and works in the Bronx. Here is my dream: bathroom, kitchen, and floors, and I’ll be happy.

I picked up Sabou as soon as the home organizer left and graciously thanked them a million times while apologizing just as much. They did not look happy when I got there. I feel so bad, but I swear, they didn’t tell me.

Sabou was confused by the change, because her stove is now in her bedroom with her other toys. So I made a point to play with her in the bedroom with the stove so she could get used to it being there.

She also took a long bath, and I got to really wash, condition and brush her hair without her screaming. That was a great gift, and she really looked very cute with the curls all taken care of. No idea what will happen tomorrow morning, and I miss her braids so much. I’ve asked Youba to call his friend to see when she can come and do the braids again. Still no response there. I may need to find a plan B on the braids.

Then I asked Youba if he would like to go to the mall. He said no. So I asked if he would watch Sabou so I can go to the mall. And he said yes. I was thankful and tried not to seem so shocked. And I went for a bit to the mall, trying to remember all the ideas and recommendations that the home organizer had left me with, and it was hard to remember them all. Also, my body was completely worn out from the day, so it didn’t turn out to be a great trip to the mall, I didn’t find anything useful, and it hurt to walk, but I was out of the house and on my own for a little while, and that is always good. I picked up ice cream on the way home, and Sabou greatly enjoyed that.

2/21/12 – Unbelievable PAIN

Sabou was reluctant to get dressed again this morning. So, I tried something new. I am not going to fight with her every morning. I gave her the diaper and the clothes and told her to get dressed when she was ready. Well, she was in no way ready. She was happy in her Curious George pajamas. “More George!” And I left her be, and took care of myself, took my meds and sat down to my breakfast and prepared hers. When I was done, she was still not taking any steps dressing, although she was eating, I decided to go for the hair. I mean, this is always another avenue of conflict for us. But, surprisingly she did OK, and I was able to get through all the curls. Then I started to work on her favorite thing of all time, the DISHES! Well, she wanted to help so badly. I looked at her and said, put on your new diaper and your pants and you can help. She thought about it, and I said it again. She nodded yes, and walked over to the clothing with her pants down and changed her diaper. Before she put on her pants, I got her cream on her legs. Then she was standing there without a shirt on. She said, “Mama, shirt.” We walked over to her dresser and she OK’d the shirt for the day. No drama, absolutely no drama. It was like a new world opened up.

We did dishes together, brushed her teeth, and were ready to go about 15 minutes before we usually leave. I guess we can make progress if we don’t give up. And then it was off to work.

I am just sitting at my cubicle, reviewing proposals, at the end of a non-remarkable day, and it hits, like completely out of the blue, this incredibly intense pain across my abdomen, like what is this? It moves like a shooting line of pain up my back, just left of my spine, and feels like it’s in the heart. What is this? I just breathe through it very slowly. It comes and goes. It moves like a wave of pain. I keep working, trying not to make a scene, but it is really unbelievably painful. So I just give up, and log out of the computer, and slowly so slowly walk myself out of the building, wondering how I’m going to handle the three rush hour subways back home, especially if I can’t get a seat and am being thrown around while trying to hang on to a pole for dear life.

Walking is very difficult, it’s like I can’t completely stand up straight. I just take it very slowly, and rest on the sidewalk when I need to, though I would have much preferred to sit down.

At one point I leaned against a pole and called my sister, her cell phone and my parents’ cell phone. No one answered. Then I texted my sister about the pain and a hope that Mom and Dad could come to see me sooner than Thursday, because I don’t know what this is, nor how long it will last.

And I entered the subway. Luckily it was there waiting, and was nearly empty so I got a seat to Manhattan. When it came time to change the train, the express was just arriving and was so jam packed, I knew I wouldn’t have been able to handle it, so I just waited, not really caring how long it would take for the next one to show up, and just leaned up against a pole waiting.

Thank goodness, the local was right behind and next to empty. I just sat down and took that ride all the way home. By the time I got home, the pain had completely dissipated, and I immediately called my sister back and told her to disregard the text message. She had never received the text message anyway.

Just a lovely little hello from Lupus I guess.

Tonight, Sabou had a bit of a fit. She doesn’t like not to get her way. She has her way that she likes to do things. She doesn’t like the elevator, she likes the stairs. We live on the fifth floor. She also likes to stop at apartment 3D to say hi, on the way up. The family there is very accommodating, but I don’t want to tire them out. Tonight we went out again, to buy flowers. And again, she wanted to climb the stairs and knock on 3D. I can’t in good conscience put the family through that twice in like 20 minutes. Sabou threw a FIT, a screaming fit right there on the third floor. I grabbed her up, and all of our stuff – her stroller with the baby teddy in it, the two bouquets of flowers, and hobbled up the stairs, for the second time in about 20 minutes. I was feeling so weak. Well, the girl went ballistic on me, and it didn’t impact me at all like it used to. I was expecting it, didn’t take it personally, and just let her get it out. She screamed, she threw herself on the floor, she did all of the antics that toddlers are so good at, and I was completely unaffected and just let her have her space to get it out. After a while she did calm down and then just wanted to be hugged, which I did. I just hugged her. The rest of the evening was fine.

When Youba got home I described the pain for him, letting him know that whatever it was had left and asked him what he thought. He said I should join a gym. I said, “Really? When would I go? When would I be able to go?” He went silent. I didn’t let it stay there and said, “Maybe in May when you graduate, then I could think about it? Will you be here more often after graduation, here with us?” He responded, “Yes.”

I hope so, I really hope so. It would be wonderful to have that time to get back into therapy and who knows, find my way back to Curves, if my body can handle it. It does kind of scare me to think about exercise.

2/22/12 – Halloween in February – Adventures in Getting Dressed

This morning, again, we had the clothing dilemma. And every morning I find I need to get even more creative in order to avoid the screaming and fighting, etc. She totally did not approve of the clothing I chose for her today. She went to the closet and I had her pick what she wanted to wear. Hands down, she chose her Curious George Halloween Costume. I went with it. We took it down and I explained that before we put on the costume, she needs to have a new diaper. “OK Mama.” And the new diaper went on. Then I explained that we don’t wear Halloween costumes without clothing underneath, so the pants that I originally picked out went on. Then I said we need to have a new shirt on before we can put on the Halloween costume. She still didn’t want the shirt I picked out and instead wanted the extra large Curious George t-shirt that we had made to fit over the monkey costume so people would know that she was in fact Curious George and not just any old monkey. I went with it and put the huge t-shirt on her. She then climbed into the costume and I zippered her up and put the hood on. Immediately she looked at me and said, “I don’t like it.” Inside I was so happy with her response and off came the costume, and voila, a fully dressed little girl. She still wasn’t satisfied. Didn’t like the huge t-shirt. OK, so that came off as well. I asked her which shirt she wanted to wear? Lo and behold, she chose the original shirt I had chosen and there you have it, a fully dressed girl, without socks and shoes.

Periodically throughout the morning, I tried to entice her into the socks and shoes, but that just wasn’t happening. I can’t even remember how it finally did happen, oh wait, oh yeah, I was making it look like I was ready to leave, hat on, coat on, and I asked her to go get her baby stroller, the one she likes to bring to day care. She was thrilled with the request and immediately went and got it. When she came back with the stroller in hand looking all proud of herself, I explained that she needs socks and shoes if she wants to push the stroller outside. And there you have it, we did it.

Now, please don’t think that was the end of our morning together, because, of course, once outside the door of the apartment, she realized that she wanted to bring a huge bag of crayons to day care. On that I had to just lay down the law. Day care has enough crayons and they don’t need hers. She screamed, ranted, plopped herself down on the floor in the hall outside our apartment, and I pushed the stroller towards the elevator down the hall, figuring that she’d get tired of crying and being alone and come to the elevator at some point. The elevator opens, and it’s Youba coming home from work, looking at me like, why are you here with the toy stroller and where’s Sabou, etc. He then hears her down the hall and sees her sprawled out on the floor crying. He immediately picks her up, and begins to open the door of the apartment. I walk over. “Are you bringing her back into the apartment? Do you know how long it took me to get her out here?” No matter, Sabou was back inside, coat off, shoes off, and I just gave up. I lied down on the couch and took a half-hour nap. At least my first meeting this morning didn’t start until 10am, so I had a little leeway. Then when I woke up, she was a bit more receptive to leaving, put the shoes and socks back on and we left the apartment without a hitch, at 8:40am. Yes, this is my day before I even start work.

Late in the afternoon I realize that today’s the day I have a late meeting and need Youba to pick Sabou up from day care. I immediately call him to remind him and leave a message. I am not hopeful, but what else can I do. The meeting went on until 6pm. I have to say that through the last half-hour, the only thing going through my mind was that I really need to go home. It was very hard to concentrate.

I left right after the meeting and got home just before 7pm. Checked my apartment first, EMPTY! She’s still at day care. OMG, and after Monday, when I left her there on a day that they were closed. I feel like I’m losing my mind and can’t afford to lose this day care provider. I run across the street and pick her up. There are still lots of kids there. She’s already had dinner. Big relief for me.  And the big news of the day – she pooped in the potty at day care for the first time! She’s kind of been not interested in the potty at home lately, and as you can see, I have a lot of other stuff going on that I’m not pushing her. This was a huge success for her!

Then, as the fates would have it, I randomly get an email tonight from the organizers of the Lupus events that I’ll be speaking at in March, that there’s a seminar about the importance of fitness when you’re living with a chronic illness like Lupus or dealing with chronic pain. Can you believe? Just days after I had such thoughts and Youba made his comment about me joining a gym? There will be a personal trainer there to speak to people with Lupus about how to safely exercise.

I immediately call my parents, who are scheduled to arrive tomorrow afternoon anyway, and ask if they’d be willing to babysit so I can attend this seminar. My mom was completely supportive and if the crazy pain that showed up randomly Tuesday stays away, and if I’m not too exhausted from work, then I’ll be checking out that seminar tomorrow.

2/23/12 – The Return of Curious George

I woke up this morning completely wet from sweat, a night sweat? Or just dealing with the lack of control of my utilities? No idea, but I’m watching this.

Sabou was right on time with getting dressed this morning. She chose the blue outfit and purple socks. Yes, she is starting to get her colors. It was great and she was ready to go 15 minutes early. :)

After work, my parents arrived with gifts in hand for Sabou. Since Curious George did not survive the trip to Mali; Youba is not even sure he made it out of the cab on the way to the airport, my parents and sister had pitched in and bought her a new one.

Well, let me tell you, Sabou is not happy at all with him. She keeps scolding him, yelling at him, pointing the finger at him, putting him in time-out and sending him to bed. Then she checks on him because he is crying. She brings him over to me to hold because he is crying. She is really upset that he left and was gone for so long. OMG, it was hysterical and adorable at the same time. And yes, I see myself in her actions. Believe me I do.

It’s just wonderful having my parents here, and showing off the newly organized kitchen and apartment. They were quite impressed. Now, it’s time for the housekeeper for the maintenance of it. I’ve been way too busy at work to make that phone call yet.

As soon as I saw my parents, I knew that there was no way I was going to go to that Lupus Fitness seminar. I was just so happy and relieved to see them, and I didn’t want to leave. I’m sure there will be more such opportunities in the future, or at least I hope so.

2/24/12 – TGIF

What a relief not to have to worry about getting Sabou dressed and out the door at 7:40 this morning. Although, she would have been ready. She was very cooperative this morning, and maybe that’s because she got to stay home with Nana and Pops? I don’t know, but it was an easy morning for me to get to work.

At work, I don’t know, but maybe it’s just because my folks are in town and I know that they are having a fabulous time with Sabou, and that Youba is home, but it was so hard to stay present at work today. I was fine in the morning, helping to co-facilitate a meeting, but once that meeting ended, I was just toast. I wanted nothing else but to go home. It was a long day.

When I got home, it was raining and I was completely exhausted. The plans of food shopping with my Dad just died. I couldn’t imagine walking through the rain, pushing the shopping cart of stuff, just getting soaked. We gave up. Once the rain died down a little, we headed out to the new chicken place and ordered fish for everybody. Much easier to handle, and we can do the big food shop tomorrow in the daylight, when it is not raining. I just need to take things slow and easy, that’s all.

This weekend, I am looking forward to going shopping with my parents for the items that I want to get in order to keep moving forward with the Feng Shui, and with the recommendations from the home organizer. I think my parents will be very helpful in this realm. And then we’re off to Sesame Street Live on Sunday, which I am very excited about.

Still no horrible joint pains to speak of. My hands feel swollen and tight, but not too bad. It’s almost like they don’t have a lot of feeling in them, but they are still working, I mean, I’m typing, right? There are slight moments of pain, but nothing sticks around too long. Basically I think I’m doing pretty good, which is a relief, and knock on wood. Who knows how long these days will last.

Sabou’s rash is not going away at all. I’ll give this lotion one more week, to make the 14 days prescribed, and then move on to the other cream the doctor recommended if this one doesn’t work. No idea what it is, and really hoping it goes away.

2/25/12 – Gone Shopping

Today my big plan was to make use of my parents being here and go shopping. We started with errands like food shopping, picking up the dry cleaning, and stuff, and then went to the mall.
It was great to have them there to help me figure out what to buy to keep my home organization movement going, and for advice on things like vacuums, things I just never really think about.
For me, I thought we had a great day. Dad cooked an awesome chicken dinner, and we chilled out for the evening.

So different from my little excursion to the mall by myself when I just felt overwhelmed and confused by what I was even looking at. It’s the little things that mean so much.

2/26/12 – Madison Square Garden

So today was the big day. Sesame Street Live at Madison Square Garden. Yes, doesn’t it sound amazing. Well, nothing without glitches, right?
Well, add on to the order the fact that for some reason, my neck is in a lot of pain, and it won’t move. Oh, this is starting out well.

Then, it’s Sunday and I need to get my parents to church. I’ve got the girl dressed in her Sunday and Elmo best and we head out. What a nightmare. Sabou couldn’t take it. She assumed the entire pew was for her, and wouldn’t stay put. I think we lasted for about five minutes before the antics began, and then we hid in the back room where she proceeded to throw herself on the floor and scream. Lovely.

She also wouldn’t leave. I couldn’t get her into the stroller, she kept trying to run back to Nana and Pops in the church. Oh man. Somehow I finally got her out of that church and into her stroller and away from all the people who were trying to pray.
She screamed the whole way home, down the sidewalk, with all the lovely stares we get from people. I couldn’t wait to just get home.

All her squirming in the stroller worked, and she wiggled her way out of the straps. I really do need a new stroller. Luckily we were just one block from home at that point, so she was able to walk the rest of the way home. This greatly calmed her down, and all was well until we got to the front door.

That’s where she realized that we had left Nana and Pop Pop Pops behind in church, so it was time for more wailing and screaming and throwing herself on the floor. This is how we entered the door and greeted Youba.

He was like, what’s wrong? Oh, nothing. She crawled into his lap and fell asleep. She slept for a long time, actually, and I was wondering if we’d make it to Sesame Street Live at all.
So, with lunch packed and prepared, and a well rested Sabou, we headed for the subway. No problems with the transportation. We arrived at 34th Street just fine, and then couldn’t find the elevator. So, up the stairs we went. And there’s the Garden. We did it.
Um, no, we didn’t. It turns out that because of construction, the theater entrance is on 7th Avenue. Are you kidding? So, me, with my neck pain, and now leg pain from carrying the stroller, and my Dad with his a-fib issue, and my Mom, the healthiest of our bunch, started the slow walk to 7th Avenue. Dad noticed my limp, “Oh, you’re limping too?” We just took it slow.
Inside, you know, there’s still a long way to walk, and we are still not in the theatre. I really do question my so-called good ideas a lot. But the seats were perfect. I got two back rows and aisle seats for easy access for Sabou to leave at any point.
The show was cheesy but really cute. Only thing was, Sabou kept asking for Dora. I had to tell her that Dora doesn’t live at Sesame Street. We made it through the hour long show, somehow, with one fall, and one tantrum, so really not that bad.

The best thing that we did this day was to find a restaurant in Penn Station, near our subway, with a train theme. My Dad knew of it, and with Sabou’s love of trains, and association with Daddy and Choo-Choo, it was just the perfect place to wind down after our adventure.
Home again, and I am down for the count. I am so exhausted I can barely move. My Mom notices it right away, and gives me space to just rest on the couch. I love when they come. I hate that they’re leaving tomorrow.

The on-line support groups at 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:
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Last edited by patricia obletz. Based on work by Tyler Schuster.  Page last modified on March 08, 2012

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