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.

1/9/12 – Decided to Stay Home

I was still not feeling better at all and decided to stay home, understanding that the doctor note only lasted until last Friday, and that if I was getting worse then I should buy the stronger medicine, because neither idea, returning to work nor trying stronger medicine seemed to make sense to me. I wasn’t getting worse, I just wasn’t getting better. Also, my doctor was scheduled to come back from vacation tomorrow, and I really wanted to see what he had to say instead of the other doctor.

It was another day in bed, coughing every time I talk or, even worse, if I laugh. I have completely settled in to a sedentary life in the apartment and am still amazed that I feel no cabin fever. I really can’t do anything else anyway, and the couch is very inviting.

I call the doctor and find out that he’s completely booked for Tuesday, but I’m able to get an appointment for Wednesday. I grab it.

1/10/12 – Another day of rest

It was yet another day at home on the couch. At least today I had to drag myself out of the house to get to therapy. I mean, there are only two sessions left before I ‘graduate’ since Youba will be returning to school soon. It was too much. I should have stayed home. As soon as I go outside, I just start coughing. So, I didn’t stay too long, not much to say without coughing anyway, and just went home for more sleep.

1/11/12 – Back to the Doctor

It was great to see my doctor. We looked at my x-ray from last week again, and he stated that he wasn’t sure if it was pneumonia or not, but that it didn’t look good. He didn’t agree with any of the medications that the other doctor had prescribed, which I was relieved about, since these medications were making me shake anyway. He prescribed Augmentin, which had worked quite well back in October and told me to stay home until Tuesday of next week to make sure whatever it is gets fully cleared out. I am completely relieved mostly because I know that this med is covered by my insurance, and I know that it works. So good to see him.

I share with him that I’m speaking at my first Lupus event on the 21st, and his initial reaction was, “Well, then we have to get you better.” Then he asked what I’ll be talking about. I thought about it and said, “What it takes to finally find a good rheumatologist and why it’s so important.” He just turned his head and smiled. I looked at him and said, “They’re not all good, you know.” He said, “I know. Now, let’s get you better.”

Since I knew I’d be home now, I called the furniture store and told them they could deliver the mattress at any time. They are coming tomorrow.

It’s good he told me to go home because I ended up taking like a three hour nap after that short excursion to the doctor. I’m still coughing every time I go outside and every time I talk or laugh, which are two of my favorite things to do.

I called Youba this morning to give me the latest updates on my health and to see how they are doing. Sabou was not home at the time. She was on a motorcycle ride with his youngest brother Issa. My girl really knows how to live. Last year, she and Issa got along famously. He’s the one who taught her to say ‘Sshhhh’ while putting her finger to her mouth. He was using it as an intervention to get her to stop crying, but she thought it was a game and did it every time she saw him. She has continued to do it all year, which is just adorable.

Well, one year later, she now knows his name, and every time he comes home on that motorcycle, she yells, “Issa, bye bye. Issa, bye bye” meaning that she wants him to take her on the motorcycle. Her idea usually works and she gets to go. She gets whatever she wants. I am sure that the family just absolutely adores her.

Youba also lets me know that he finally got some pictures of her with the bunnies and will send them when he can.

1/12/12 – D-D-D-D-D-DORA!

The mattress arrived in the morning, and this was kind of exciting actually. The guys did all the work, I just had to open the door for them, and suddenly, within five minutes, all the old garbage mattresses were gone, and only this new gorgeous mattress remained. I took all my energy, made the bed, complete with all the Dora paraphernalia that I could find for Sabou, and fell asleep for hours.

My idea about this incredible influx of Dora is that she will be coming home soon, from complete independence and freedom, bunnies, tricycles, motorcycle rides, pigeons, chickens, donkeys, goats and sheep. She’ll be used to cousins all around her to play with, the ability to play outside. I keep thinking that her transition is going to be difficult, back to life in a small apartment, in freezing cold winter, with a lot of time alone with Mommy in the living room. I need to do something that will give her happiness upon her arrival. Hopefully the new bedroom will do the trick.

Then I remember that I was afraid of a difficult transition last year too, and there wasn’t any. So, we’ll see. My parents are also worried, and they just miss her, so they have requested to be here when she comes home and to stay with her for up to a week, so she can acclimate before returning to day care. I am thankful for their help.

Between naps, I worked slowly to bring all of her toys out of the living room and in to her own room, where she will finally have a place to stay. It was a lot to do today, and there were a lot of naps.

I have to say though, by the end of the day, I could feel healing. I started to feel better. Yes, still coughing whenever I talk or laugh, but the coughs aren’t as deep or as harsh, and I feel my brain coming back and out of the fog.

I even participated in a work webinar today. Luckily I didn’t have to present, because I’m still hoarse, but it felt good to be back involved. I got a little overzealous and considered returning to work on Friday. When I brought this option up to co-workers, the consensus was that it was better to rest up and get better in order to avoid another bout of sickness down the road. I am going to take their advice. It’s what the doctor ordered anyway.

I emailed the home organizer to see if she would be available over the weekend, and the only day she is free is Monday. This is perfect because Monday is a holiday for me. So, if all goes well, and my body keeps healing, I’ll be taking on the apartment on Monday.

1/14/12 – Living Room and Scrambling Eggs

Yesterday, Youba’s co-worker arrived in Bamako and they got safely settled in to our house in Moribabougou right outside of Bamako. Today, Youba sent the most adorable photos of him and Sabou playing on the new living room set. Yes, it has arrived all the way from Mauritania and it looks gorgeous. These were the first photos with Youba in them, since now his coworker is available to take pictures. He looks so happy and like such a proud daddy in these photos. I begin to miss him even more. When I look at these photos, I feel loved, along with a pang of sadness, wondering if the Lupus will ever be controlled enough for me to return to Mali. Will I ever get to see my living room in person?

He also sent the most adorable series of photos of Sabou cooking eggs for the family with Tanti Mariam and cousin Papa. She looks so serious in the photos, really concentrating. I keep wondering what to do when she comes home. I am so afraid to have her near the stove, afraid she’ll get burned, and yet, here she is, showing her cooking skills, cooking outside on charcoal, and looking like she’s loving it.

Sometimes it makes me feel a little sad, because I keep thinking that she is so much happier in Mali, and surrounded by so many people who love her and can show her things that I can’t. And then sometimes, I am just happy for her in ways that I don’t know if people in the States can understand. I mean, she is lucky enough to have so many aunties (Tantis) to take of her, to help raise her, to teach her and guide her in Mali. She is completely surrounded by love. In the States, she’s got me, alone, most of the time, so she is limited to experiencing what we can in the Bronx, with a Mom who’s not always feeling physically well. She’s in a much better place, a happier place, complete with pets, and bikes and cousins who she can interact with on a daily basis. In the States we create such incredibly busy hectic lives, that it’s almost impossible to see friends and family on a regular basis. So she ends up being alone in the Bronx with Mommy, while Daddy goes to work and school and cousins live at least an hour away. I think this is partly why I really don’t feel like they are far away. Especially Sabou. Because I know where she is, the people she’s with, I mean they’re our family, and what kinds of activities, laundry and the like, that she’s doing, that she just feels close to me.

It’s been interesting to experience this missing of Youba and not so much Sabou. I look at the photos where you can tell that this girl is having the time of her life. She is in a great place, surrounded by family and animals and fun. I look at these first photos of Youba and I see the man I fell in love with on Yahoo! Personals those years ago, and I just can’t wait to see him again. I mean, yes, I miss Sabou, her cute hugs, her smile and laughter. But it’s not this painful, pitiful, oh whoa is me, missing where I am just miserable. I look at her and know the joy that she is experiencing and I only feel happy for her and grateful that Youba was willing to take her on this amazing journey. I have decided to make a photo book for her that she will have always.

1/15/12 – Send Money – the Tourism has begun

So for the first time in his life, Youba called me to ask for money. He has figured out some fun touristy things to do with his friend and Sabou, but it means renting cars and hotels. They’ll be going to Siby, a very touristy place with a waterfall, and to Kadiolo, a city in the south near the border with Cote d’Ivoire. The irony is that I never really did much tourism in Mali when I lived there, so I’ve actually never been to either of these places. When Sabou comes home, she will have seen parts of Mali that I haven’t, and that makes her my hero even more.

He said that today they spent some time in the Artisinat – the touristy market downtown Bamako where you can get very cool souvenirs and artwork. Then they went to the National Parc du Mali, which is brand new, and is like parks we have in the States, where people go, chill out, sit on benches, play sports, hike, and they even have playgrounds. He said that Sabou absolutely loved the playground. I’m sure it was like a little piece of home for her.

Now, I’ve never sent money overseas, but he reassured me that I just need to go to this tiny little storefront kiosk near our grocery store and tell them that I need to send money to “Youba in Sikasso”. OMG – it was just like Peace Corps all over again. Just a first name and a village name is enough of an address to get to someone. I didn’t know it was the same for bank accounts. This was awesome. And it was amazing to me to see how immigrants find their way in a city as big as NYC, and find a way to get money back home immediately. The man knew who Youba was, and sent the money, no problem, just like my experience in Mali in Peace Corps all those years ago. Another man working there was Malian, and we got to talking in Bambara, and it turns out his village is not far from my Peace Corps village. So, I got my little piece of the Malian adventure right here in my own neighborhood. It was nice to go outside, even for this little bit, but once again, as soon as I got outside, the coughing started again. Time to just go home.

1/16/2012 – Home Organizer!

So, the home organizer arrived; she did an assessment with me of the house and gave me some ideas, and then we got to work. All those boxes from my former life, prior to diagnosis: PhD school, dissertation, corporate trainings, university teachings – gone, completely gone from my house. She said something I will hold on to for a long time. She said, “When you fill up your house with the past, you make no room for the future to come in.” It’s so true. I mean, I am never going back to finishing the dissertation, or doing all day corporate trainings, or teaching. It was good to let it go, clear a place in my apartment to allow whatever is next for me, within my new context of Lupus to just show up. I welcome it. And in a way it already has, as I continue my group leader role on Lupus on-line support groups and the like.

After about four hours straight of work, my body had just had it. It stopped working. We weren’t quite through with other things I had hoped for, like the clutter on the window sills, and stuff, but you know what, I just needed to sit down. I told her I couldn’t do anymore. She completely understood. It was an amazing experience.

When she left, we had a closet where we could actually hang up coats. I am down to ONE file box of stuff I wasn’t ready to get rid of, and Youba’s stuff has been consolidated into three boxes. He can go through it at his leisure and decide what needs to stay and what needs to go.

The experience was so refreshing and gave me such hope, that now I am determined to bring her to take on the hardest room in the apartment – our kitchen. My next day off, that sounds really funny to say, since I’ve only worked one day since 2012 began, will be President’s Day, and as long as day care is open, that should work.

As the day wore on, between naps, I proceeded to clear the clutter and take care of a few things she had recommended. I kept the momentum going even after she left, and that in itself is amazing.

The other thing that is happening simultaneously with all of this, is that I am getting back into my Feng Shui with a Peace Corps buddy of mine. We are doing a nine-week program together, a workbook called Feng Shui and Money, which I strongly recommend to anyone. It completely transformed my life the first time I did it. And we plan to check in with each other’s progress on a weekly basis. I am excited. It’s perfect timing with the Home Organizer.

1/17/2012 – Back to Work and Can’t Stay Awake

Wow, what a transition. The first thing I noticed when I got to work today was that there are no couches. My entire existence over the past two weeks has taken place on a couch with the ability to nap whenever I want for as long as I need. As I looked around this open cubicle environment, I realized, nope, no couches. And I settled into my desk and the 100s of emails.

One thing that happened today at work was that people were so glad to see me, glad to have me back, and thankful that I’m OK. They were worried. They care. I really like my job and the people I work with.

By the afternoon, it was extremely difficult to stay focused, and at times to stay awake. I was just grateful to go home at the end of the day, knowing that I still had a full week of work to get myself transitioned before the family arrives home.

On my way home, I did have my last therapy session. It was a short one, not much to say, everything has been going quite smoothly since they left. We knew it would. I told him I’m not in crisis and that I’ll be fine. He offered me the opportunity to call and set up an appointment if I ever need one, he’s still open to working with me. It’s nice to have that option, and we said our goodbyes.

I also went to the Container Store to pick up a shoe tree, inexpensive and strongly recommended by the home organizer. I think Sabou is going to love hanging the shoes on it and making it turn around.

1/18/2012 – Still Can’t Stay Awake

Well, the transition continues, and it’s still difficult to finish the whole day without feeling completely wiped out. I kept fighting off sleep in a late afternoon meeting, wondering if people thought I had developed tics, just trying to keep moving in order to stay awake. Not an effective way to go, by the way.

And I need to find some semblance of energy because tonight is my big night on the town, Broadway that is, with a friend. I get to TKTS and get tickets to Anything Goes. I couldn’t think of anything more traditional Broadway than that. It was great to see my friend, hang out before the show, and then to enjoy the amazing hysterics of Anything Goes, I mean, even the song lyrics were hysterical. We just laughed and laughed. It was an awesome night. Yes, I am making up for the two weeks in bed, and trying to have some fun before they come home.

What I need to say right here right now is that I am completely hooked on Broadway now. I want to find a way to go to shows, maybe like twice a year or something. It was that good. :)

1/19/2012 – Still Can’t Stay Awake

All I can think is that the pneumonia/severe bronchitis has completely wiped me of all my energy. Same issue in another late afternoon meeting. I have to get this under control, for real.

One thing I’ve noticed is how amazingly easy it is to keep a clean home when I am the only one in it. I have continued to take small steps towards organizing the apartment, like window sills and trinkets, placement of tables, etc. It’s reminding me of when I studied Feng Shui and how powerful that was in my life. I have no idea how to keep this up when the family arrives home.

And today it was out for Indonesian food with a friend I used to work with. It was wonderful to catch up with her. It turns out that she has a family member who died of Lupus, so she has a deep understanding of what I’m going through. You just never know. We had a fabulous time, and I really hope we can do it again, with or without Sabou.

1/20/2012 – Stayed Awake All Day!

Yes, so my transition to full time work is complete, and I was able to stay awake even through a late afternoon meeting. I left work feeling very proud of myself. Yes, it is the small stuff.

1/21/2012 – Plans Change, Flights get Cancelled

Youba called from the Bamako airport to let me know that the airport was completely empty and closed. He asked that I call the airline to see what’s going on. He was having a hard time getting through.

It turns out that the flight had been cancelled, they had been moved to the flight on the next day, and never contacted Youba to let him know. All is well, and they are now leaving on Sunday night with a scheduled arrival of Monday morning.

What I was amazed with was my reaction to this information. It was complete understanding, that there is no reason to ask why, that in Mali, yes, airports close without you knowing. I know. Every time I tried to fly to Timbuktu, I’d show up at the airport and there would be no plane. I was at complete ease with the information, and happy that Sabou was having the Mali experience that I remember from Peace Corps. You learn to just take these things in stride.

1/22/2012 – Parents Arrive

Now, my parents had already decided to be here when they get home, and I will always be eternally grateful to them. There was a birthday party at my brother’s house that I wasn’t expecting to go to because of the arrival of Sabou and Youba, but with the change of plans, I was able to go. I took a bus right to their small town, and my parents picked me up and drove me home afterwards, since they were planning on staying anyway.

My mom is very smart, and instinctively she knew that Sabou was going to need time to adjust to being home and she offered to stay all week so that Sabou could be used to being home before returning to day care. She was so right.

And the fact that I have to work on Monday and have a doctor appointment afterwards, I was so grateful that they would be there to greet them when they arrived. My mom kept asking me to cancel the doctor appointment, or not go to work, but I reminded her that I was just getting over the lung issue and needed to see the doctor. I also have already used up any and all sick/personal time I had accrued. She didn’t quite understand, feeling like my number one priority should be my daughter. And I simply explained that in order for me to be here for her, I need to be taking care of myself and getting to all of my doctor appointments. I think we have the same goal, just different ways of getting there.

1/23/2012 – They’re Back!

My mom called me around lunch time to let me know that they were back, and that Sabou seemed a bit confused. She was looking all over the apartment for me. “Mama? Mama?” I almost cried. I just wanted to be home with her at that moment, but I need to keep focused on getting through the day, the important meetings, and the all important doctor appointment.

Good report from the doctor. I am all better and he doesn’t want to see me for two months. That’s the longest time ever since diagnosis, I think! I’m somehow quite proud of myself, as silly as that may seem.

When I got home, Sabou was completely groggy, jetlagged, and just waking up from a nap. She looked like she wanted to run to me, but just didn’t have the energy. She came across the room to the front door slowly, like a zombie, rubbing her eyes the whole time, and into my arms. That’s pretty much where she stayed the rest of the evening. I love those moments in parenting. She looks just gorgeous sporting her beautiful braids and newly pierced ears. Beautiful girl. Beautiful Sabou.

1/24/12 – Adjusting to Being Home

Sabou is definitely confused. She keeps asking for Bryce, who is the co-worker of Youba who traveled with them in Mali. I have to keep reminding her that Bryce is not here, only Mommy, Daddy and Nana are. I think she’ll figure it out in time. Poor kid.

And she is also behaving like an angel. Just sitting in my lap, hugging me, kissing me, brushing my hair. This is not the kid I know. Where is my little mischievous child?

1/25/12 – Gratefulness

Every day that I have been working while my Mom has been here, food is on the dinner table when I get home from work. Sabou has been fed, cleaned, dishes washed and the place is even picked up a bit, I mean, remember, there is a toddler wandering around. I can’t tell you what an amazing feeling that is, how loved I feel, and how grateful I am to my Mom. I would love her, and kind of need her, to move in with me, but with our small Bronx apartment, that just isn’t a possibility. Here’s to you Mom.

1/26/12 – The Girl Definitely Speaks and Understands Bambara

Today Sabou did a poop in her diaper, and instead of yelling her usual, “Mommy, POOP!” Instead this time she just kept repeating, “Bo ke. Bo ke. Bo ke.” I couldn’t believe it, and I am so grateful that I know Bambara. For real. When it came time to flush the poop down the toilet, she pointed her finger at it, in true Mali Muso fashion and yelled at it, “A MAYNE! A MAYNE! A MAYNE!” And that word means BAD. She amazes me every day!

1/27/12 – Checking in on Linguistic Abilities and Train Fiasco

Today my Mom and I and Sabou were hanging out on the couch, Sabou was brushing my hair as she loves to do, all the while speaking complete gibberish. So, my Mom and I decide to do a little experiment. When she was talking, I began responding in French to her gibberish. Well, her gibberish completely changed tone and intonation, and even though it was gibberish, you would swear that it was in French. That she was trying to speak in French. We did this for about five minutes I think, and it was absolutely the cutest most amazing thing I’ve experienced lately. Then we really got inspired, wondering what would happen if I responded to her in Bambara. So, we tried. And, yup, there she was, speaking a completely different gibberish with all the tones and intonations of Bambara. She truly is an amazing girl. Oh, so you wonder what she does with English? Well that’s completely different again. Basically she just repeats whatever the last word you said was. It’s a great way to get agreement, you know, just end every sentence with OK. Or at least pretend you got agreement. So, you’re going to bed now, OK. “OK.” Like that. Oh, don’t we all wish it were that easy.

After that fun and excitement, it was time to drive Nana to the Amtrak station so he could go home. I wish, I really wish she didn’t have to, but there you go, c’est la vie. We eat pizza and head on our way, hanging out at the station with Sabou until Mom is ready to get on the track. Sabou and I head home, into the stand still traffic on Route 95. Well, somewhere in those moments of not moving, with car in park, I check my phone. Like 4 voice messages. It turns out that my Dad had tried to call me because he had heard that the train was delayed by like two hours. We had no idea. Not my Mom nor I had ever thought to call Amtrak. A huge No No. There are also messages from my brother, who always comes and bails me out of bad situations, you know like Lupus ridiculousness. I immediately get off the highway at the next exit, as we kept inching along, and turned around to head back to the station. The phone rings again, I can only imagine it’s bad news, so I pull off the highway and into a mall parking lot and listen. Two more voice messages, one from my Dad, and another one from my brother. I don’t listen and just immediately call my brother back. He tells me that my mother is in a cab on her way back to my apartment. OMG, now I’m freaking out. There’s no one at my apartment. I’m stuck in traffic. She will be too. And she’ll arrive to have to stand outside on the street in the cold in my neighborhood. I’m freaking out. Then another call chimes in and it’s my Dad. I just lose it on him, yelling, not out of anger, just out of utter frustration and anxiety. I just want to be together with my Mom, I don’t want her to alone at the station or on the street near my apartment. I’m just losing it. Then another call chimes in and it’s not a number I know. I answer anyway, I know my Mom doesn’t have a cell phone, and maybe it’s a pay phone? Do those still exist? Yes, it’s my Mom. She is in a cab, but they’ve only just left the station. The cabby let her use his phone. I think this cabby deserves an award. I told her to turn around, I’m on my way. She got away with just giving him $5, and I got her at the station. I have never been so happy to see my Mom. Now I didn’t care how long it would take in the traffic to get home, at least we were together, and safe. And I got her for one more day. Score!

I told her there was no way I was bringing her to the train again on Saturday, and that we would drive to New Haven. Now, I haven’t driven more than 45 minutes to an hour since my cognitive problems and dizziness attack last summer, but it seems a better option than the train at this point, and my Mom can drive if I can’t, and I can stop at all the rest stops on the way home if I need to.

1/28/12 – Pushing the Gender Boundary

So today, we drove to New Haven so my Dad could pick up my Mom and drive her back home. I was pretty good driving and made it all the way to like Exit 20 or something, like about an hour, and I handed the wheel to my Mom. I am convinced that New Haven is really not half-way and that my father had to drive further than I did. We parked in our designated spot, next to a park, next to the Sound, and Sabou got to explore the grass, the sand, the water, the shells, the rocks. Outside time, that she must miss so much. I’m so glad I was able to give her a little.

On the way home, I drove to almost the NY border and stopped off for lunch with Sabou at Friendly’s. It was a great way to break up the trip and make sure that the girl was fed so she could sleep in the car. I was fine the whole ride home. I keep thinking that I can do more than I think I can, but then I get scared that something bad will happen, and that it’s just safer not to try.

Each day that Sabou has been home so far, she has surprised me with some new vocabulary word that she picked up in Mali, be it in French or Bambara. Today we were driving in my car, and she’s all snug in her car seat, and she starts saying, “Mama, i ni sogoma.” Like perfectly. That’s Bambara for good morning. I was so surprised. So I answered with the proper female response, “Nse.” Well that didn’t fly at all. She must have repeated the male response over and over again like for five minutes. “N’BA. N’BA. N’BA!” I just love a girl who challenges gender roles. You go Sabou!

1/29/12 – Mama, Outside. Mama, Car. Mama, Sam.

Now I know that Sabou has adjusted. She’s acting out again, and ending up in time outs. This is the girl I remember.

Today, instead of asking for Bryce, she asked to go outside, take the car and go see Sam, her favorite cousin. So we did. We did a little shopping at the mall, for her big Broadway debut in February: pink glittery shoes with a bow should do the trick, and the rest of the day was spent visiting two of my brothers’ families. And LOTS of outside play, tricycles, scooters, slides, jungle gyms, cars, you name it and my girl got to do it. Hey, it’s not Mali, but it’s something. And I am determined to find ways that she can have outdoor activity play time, I think at least every weekend. At this age, that’s what she should be doing, and what’s best for her, I think? That and of course it’s so much fun.

1/30/12 – PAIN!

Work went pretty well today, except for this annoying pain that I felt growing and the ever so slightly increasing cough that was returning. Really? Like, do I need to take more time off? Are you kidding?

Well, tonight, hit the nail on the head. My entire body was in intense pain, the coughing increased, and it was very painful to breathe, with pain shooting in the front and in the back. Are you kidding? We’ll see how I feel tomorrow. I can’t take much more of this.

1/31/12 – MORE PAIN!

Today I could barely walk, I had to take it really slow. Every single tiny nook and cranny of my body was aching and screaming with pain. From my head to my toes. I made it through work though, with the coughing, the headaches, the achy body and just moved real slow.

When I got home from work, I needed to go to the pharmacy, which means that Sabou also needed to go to the pharmacy. I had no idea how I was going to pull that off because I could barely walk on my own, and I knew at some point, she was going to ask, or need to be carried. We do what we have to do, but I swear, I am really close to giving up.

The only sentence going through my brain was, like a mantra, “Someone needs to realize that I can’t do this and that I need someone to move in with me and help out.” That’s the sentence that carried us home. As I see it in print for the first time, I think I realize who the SOMEONE is. It’s me. I need to realize it, that I need help, and that I can’t do this alone. I have absolutely no idea how to find someone to move in with me to help out on the occasions when I need it. I have absolutely no idea who to ask. Plus, my apartment is way too small for the three of us who already live here, and there is no way to comfortably fit one more adult person. I am sending this need to the universe in the hopes that first I get to live in a bigger place and second that someone very helpful shows up and wants to offer their service to us. I know I’m dreaming, but a girl has to dream, right?

Youba has been awesome. He saw my problems walking, heard my problems breathing, and just held me with all the love he has for me, gently and kindly. I can’t ask for a more amazing husband. Thank you Youba.

2/1/12 – The FLU – Are you kidding me?

So I woke up this morning with absolutely no pain. Just the sore throat. I took some Ibuprofin and used my inhaler before I went to sleep, and I guess I felt it must be a miracle and I am fine again.

Um, not so. All day I was coughing every time I spoke, and while the pain was much decreased, it surely was not gone and I still was stuck just walking slowly.

After work, I took a chance and went to the doctor. He was able to see me. Have I ever told you how much I love my Rheumatologist? He is just always there for me. Anyway, he listens to me. My voice is back to being hoarse again, hears out all of my symptoms, and checks me out, and says that it’s the flu. And I took the flu shot. He said that the flu shot doesn’t necessarily stop you from getting the flu, but that if you get it, it won’t be that bad. Well, here I am to show for it, I guess. He gave me another two days off work. Really? How do I manage that? Is that a good idea? Is it a good idea to go to work? He gave me the option. I think it will completely depend on how I feel when I wake up tomorrow, which is a complete crapshoot is all I know.

He asked if I get colds a lot. Um, no, not since this Lupus thing hit, I guess, or is it this fake winter we’re having. I have no idea. I remember being a healthy active person. I really do, and it wasn’t long ago. Sigh, and the beat goes

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 Tyler Schuster.   Page last modified on February 07, 2012

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