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.

2/27/12 Ė Medication Fiasco

So, my parents left today, and wouldnít you know it, I get home from work, all ready to take my medicine, and Iím having trouble getting the pill bottle open, and whoop, there it is, all of my pills have fallen into the wet sink. ARGH!

Itís the Plaquenil. Itís my relief from who knows what kind of pain itís hiding from me so well. I just filled this three-month prescription at the end of January. Thereís like 100 pills on my floor, in my sink, and Iím freaking out, which interests Sabou in helping me, and that really freaks me out, I donít want her anywhere NEAR this medicine. No idea what effect it would have on her. OMG!

I am desperate, and I pick up every single one of those wet pills and place them back into the pill bottle. Pathetic I know, but what else could I do?

I immediately call my pharmacy and tell them what happened. They inform me that my insurance company wonít cover it and Iíll need to pay. One hundred and eighty pills, can you imagine? They said like $532. I was like OMG!

And I could easily go on another rant about why having health insurance companies decide our health care is a horrible idea, but no, instead, letís focus on what CVS was willing to do for me. They found a way to bring down the cost to $130, but they werenít sure if that amount would come up at the register. I planned to bring the credit card I never use, just in case.


So, for some bizarre reason, Sabou got up and got dressed quite easily this morning, and we were ready to go way ahead of time. So, I was able to hit the pharmacy first thing before heading to my first meeting of the day.

I brought the mangled mess of pills with me so they could see that I wasnít some pain pill freak, even though my pills arenít Opioids. The pharmacist had the best response when he saw it, ďThat sucks.Ē

He felt really bad. He looked into partial refills, but when he realized how recently I had filled this one, that was no longer an option. Then he did something he didnít have to do. He gave me a CVS discount, like a serious one. Instead of the $130 that the woman had offered me the night before, he got it down to $85. I couldnít believe it and havenít felt that much gratitude in a long time.

This experience really got me thinking about my relationship to my medications. I am not an addict, I donít think, but really how far from it am I? The thought of not having my pills, and having no idea what kind of pain Iíd be in without them, how far from that are the thoughts of an addict? And no, I donít abuse them, that would be way too scary with these kinds of drugs, and I take them as prescribed, but the thought of life without them is terrifying. Donít know where to go with this thought process, but it is an eye-opening experience to find out how completely reliant you are on pills for your wellbeing.

And today was also a planned night out. Yes, the girl and I are going out for pizza with a bunch of former colleagues, from a job I left in 2006. I was so excited, one to be going out at all, and two, to get together with people who knew me and remembered me and who I was prior to diagnosis. For many of them, it would be their first introduction to Sabou as well.

Where to start, the memory problems, or the train wreck of tantrums?

It was wonderful to see people, get caught up on where they are now in their lives, whatís going on, how big their kids/grandkids have gotten. That was wonderful. It was the reminiscing that reminded me of my Lupus. They were mentioning people who I couldnít even remember. And this was a job I loved; I absolutely loved and believed in the work. And there you have it, gone. So disheartening.

And on to Sabou, well, she was great to a point, and then, well she was a toddler in all her glory. Spinning around, falling down, screaming, yelling, running away, tantrum after tantrum. So, yes, they really did get their introduction to my girl. All of her.

Someone asked me, ďIt is rewarding though, right?Ē referring to parenting. I was really taken aback by the question, and realized, that um, actually, no itís not. Maybe it will be when sheís older. I mean there are moments that are amazing, donít get me wrong, but then and there, in the throes of it all, well, rewarding is really not the word I would use.

I mean itís a struggle to get her dressed every day. Every day. And thatís just the very beginning of the day.

I hope this changes for me. I really do. She is so amazing, and our problems are as much me as they are her. I question my parenting every day, and on bad days wish she were given a better parent, which is a lot of why my mind wanders to schools in Mali all the time, where she could grow up in a much healthier and safer environment, surrounded by women who really know how to parent.

Itís just exhausting and itís not fair to her, is how I feel. I do the best I can, but itís not much, and I want to be able to give her so much more.

Lately it all just makes me want to cry. My priorities are all skewed, yes, I want to be home with her, but no I donít have the energy.

She needs me. She needs so much more than me.

And I get so tired of everything being such hard work.

2/29/12 Ė Discoid?

So, Sabouís been on this ointment for these horrible looking brown spots on her thighs for almost two weeks now. The pediatrician thought it might be a fungus. Well, the ointment is not working. The spots just arenít going away. She told me to give it 14 days on this medicine before moving to the other one she prescribed, Hydrocortisone. Yup, thatís what I took for my discoid rash.

It will be 14 days this Saturday, and then I will start with the other cream. And the thoughts keep running through my mind. Could this be discoid? Could this be sign of things to come? I do not wish Lupus on anybody, and especially not my beautiful little girl with all the energy in the world. Fingers are totally crossed that it isnít. Not her. Please not her.

3/1/12 Ė Tantrums

Sabou has a new hobby, since sheís been bringing her toy stroller to day care every day. When I pick her up, she likes to go for a walk around the block before heading home. Hey, itís the least I can do. Sheís stuck in that tiny living room with who knows how many kids all day long. So, we go. The first day, it really was just one block, and that was fine. The next day, it was about three blocks, downhill of course, but no tantrums until we were walking by Dunkiní Donuts and she really wanted to go inside. Luckily thereís a bus stop right there, so I was able to distract her by taking a bus. Well, the ride was so short, she was really upset when we got off, and threw another tantrum on the sidewalk.

Well, today, the three blocks was not sufficient for her, and she wanted to continue to walk downhill. I know my limitations. The further we walk downhill, the further Iím going to have walk uphill, most likely with her in my arms, as sheís more likely to throw another tantrum.

I had to put my foot down. I cannot walk with her any further downhill. She threw herself on the sidewalk. Yup, just like that. My new daily occurrence with her. I let her stay there, until she calmed down enough to let me pick her up, and we walk, with her on one arm, and balancing her little stroller in the other arm. We are walking towards that same bus stop, my lifesaver, as there is absolutely no way I will be able to carry her screaming like this and balancing the stroller in the other arm up the now four blocks home.

Luckily a bus arrives and I am able to distract her again, and we take that bus all the way up the hill. She has yet another tantrum when she realizes where we are, back on our own street, and sheís thrown herself down on the sidewalk again.

Well, this time she did it in front of her neighbors. People who know her. One lady came up, looked at her and said, ďOh no she didnít!Ē And proceeded to point at her and yell at her, ďGet up, now!Ē I felt so validated. She shared with me how her son would do this all the time, and sometimes sheíd just want to leave him there. I totally understood.

When she gave up because there was no way Sabou was moving for her, and Sabou had calmed down enough to be picked up again, there we were, walking with her on one arm and balancing the stroller with the other.

At these moments, I just want to be inside, inside my house, with the door closed. There is no privacy in a city. There are people everywhere you turn, witnessing, judging, gawking. It can be unsettling, especially with a rambunctious toddler.

We get home and I am just exhausted again. I leave her be, and concentrate on getting dinner for the two of us, which she ate just fine. The rest of the evening, she didnít cause any trouble, just wanted to sit and color, which was awesome, and the only fight we had, was of course getting a clean diaper on, her ointment, and pajamas.

I really wish this whole experience werenít so exhausting, but thatís not going to change. I have no idea how other parents do it with a smile on their face.

About the rash: I got some good advice on one of my on-line support groups, that maybe she doesnít need a pediatrician, maybe she needs a dermatologist. Iíll start the Hydrocortisone on Saturday, give it the seven days, and see where weíre at. My rheumatology appointment is on Monday, and I can ask him for a good Dermatologist for my baby.

3/2/12 Ė Not feeling quite right.

I was doing pretty good all day, but then it happened. Doesnít it always happen? All of a sudden, in some undecipherable way, I just donít feel right, and Iím heading into an important meeting.

It was weird and I donít really know how to describe it, but I just kind of wasnít completely there. It was noticeable and people remarked. Probably because while looking directly at one participant I said, ďso is so-and-so coming to the meeting?Ē That was closely followed by people at the meeting asking me if Iím ok. What is the answer to that question? Am I ok? No comment.

3/3/12 Ė Learning to get taken care of

Today was a big day. My first appointment with the housekeeper, since custodial services are not in my future, even though I found out that they are available to HIV patients, and Sabou is getting her hair braided. Learning to get taken care of.

Well, the braids, thatís a whole process, but she did much better. The housekeeper, I donít know what to say. She spent 2.5 hours in my tiny bathroom. Now, mind you, it really needed it. I just canít scrub anymore, it hurts my arms. But really?

Then she wanted to know what I wanted done next. I was scared to say anything, thinking sheíd be there like all day and expect like $300 that I wasnít ready to pay, so I told her that would be all.

Dogomani, the woman who came to braid Sabouís hair, cousin of one of Youbaís close friends, who calls me sister-in-law, felt so bad that the woman was taking so long in the bathroom, that she then proceeded to do my dishes. Another weakness of mine. Iíve dropped so many glasses that Youba has forbid me from buying glass. Our fine glassware now consists of Go Diego Go.

Dogomani kept saying, ďYou need help.Ē Truer words were never spoken. She is determined to find me a housekeeper who will be thorough but not so slow and much more affordable. Iím not giving up, but there are weird issues that come up.

Like, Iím sitting there, one woman is brushing my daughterís hair, while the other one is cleaning my bathroom, and on some level I just felt completely lame. Like, why am I not able to do this for myself? And itís easy to get down on myself, but you know what, itís just not worth it. A good friend of mine is teaching me to accept the help from the universe, especially now that I need it.

Sabou and I stayed home the rest of the day. After holding her down and dealing with her hours of fussing through the hair braiding process, I was just exhausted.

PS: The bathroom looks awesome!

3/4/12 Ė Cleaning on my own

So, since the rest of the house was not touched, and still looked as bad as before the housekeeper came, I made myself a goal. I decided that I would completely clean Sabouís bedroom before the end of the day. Now mind you, with Sabou around, as I am never ever alone, this could easily become an all day process. She usually likes to undo everything right after I do it.

Well, we did it, and not only that, I threw out tons of her random plastic crap, oh, I mean toys. I have come to the conclusion that plastic has a way to reproduce itself. I swear, I never buy her toys, and yet, there they all were, taking over her bedroom.

All thatís left are the books, the puzzles, the balls, and the cars, her kitchen set, her drawing stuff, and her grocery cart and stroller. I feel like I have such a better handle on it. For now.

But then, I couldnít stop. I took on the living/office/dining room, since itís just one not so big room. The place looked awesome when we were done. A complete accomplishment and lots of body pain to show for it.

I have no idea what tomorrow will be like.

So while the Lupus is not bad, itís the emotional roller coaster that is driving me batty. I go through these bouts of intense anger and then sadness on almost a daily basis now. Mostly I think itís related to parenting, and feeling insufficient as a parent, and lacking the support that I need.

At one point during the day, I was channel surfing and came across a gymnastics meet. Immediately, I sat down to watch. It brought back so many memories of my 10 years as a competitive gymnast, and all the things I used to be able to do. Brought feelings of loss. And then they went to commercial, and there they were, showing the gymnastics summer sleep-away camp that I attended one year. That just brought the whole thing even more home for me. Look at who I was and look at who I am now.

Add to that the fact that within the past two weeks, Iíve been invited to both Congo and Nigeria, and while in a heartbeat in the past, I would have jumped at the chance, now it is simply not an option. Not with health and parenting.

Itís been a hard go lately, and Iím hoping for relief soon.

3/5/12 Ė Rheumatology

I think Sabou is getting sick. She was up all night coughing, sniffling, sneezing. Geez, I sound like a Nyquil commercial. Poor thing. No fever though, thank goodness.

I didnít have the heart to wake her up this morning, and just let her sleep. She did wake up once Youba got home from work, and was quite cooperative. I ended up not being late for work. A good revelation in terms of time in the morning.

Another weird moment at work. Yes, the body is a little slow and painful today, but mostly because of all the cleaning, Iím assuming. But into the afternoon, and same like Friday, I feel like Iím only half there. Like woozy, like out of it, like weak, like stuff.

I actually rested my head on my co-workerís desk and he was like, why donít you go home? But I couldnít go home. I had two of my most favorite things to do planned today: a trip to my doctor and to my pharmacy.

I love my doctor. Have I said that lately? He is just awesome. We talked about Low Dose Naltraxone, which I donít think Iíve even mentioned here yet. It is the drug that is used on heroine addicts, which has been found to be effective in treating everything from HIV to Parkinsons to MS to Crohns Disease and yes, to Lupus. Itís taken in a much lower dose than whatís used to help addiction, and at nighttime before bed and works while you sleep. Nearly no known side effects. This completely intrigues me and doesnít scare me at all like the Benlysta does.

Iíve shared the information at work, and now with my doctor. He is open to it, and sees it as a possible option for his pregnant Lupus patients. Very exciting. Iíll go back in six weeks, and see if itís worth trying.

He also gave me a referral for a dermatologist. I refuse to return to my old one. We found a new something on my back, and it needs to be checked out. Iíll also bring up Sabouís rash as well. Sheís not seeming to respond to the hydrocortisone either.

And we are back on tapering off the Prednisone. Iím down to 2.5mg for another month and then will try 2mg at the beginning of April. Taper take three, I think.

Well, I didnít get home from the doctor and pharmacy until quarter to nine, and then it was right to bed with Sabou. And for the first time since diagnosis, I did not take my nighttime meds. Completely forgot. At least itís the Plaquenil and not the Prednisone. Iíve decided to wait until morning and then take the morning dose. Not sure what the right thing to do is. Have no idea what, if anything, this will do to my body.

3/6/12 Ė Tantrums

Today was OK at work. My eyes werenít working too good, my energy level was very low, and I just pushed through.

We had an emergency drill and I learned that all of us who are on the Ďconfidential special needs listí (since I work on the 21st floor and canít handle that many stairs), are supposed to be assigned a buddy to make sure we get to our special location Ė the freight elevator. No one ever mentioned this to me before and I am on the prowl for a buddy to watch over me in times of emergency.

Somewhere during the course of the day a friend sent me a link to an event happening in my neighborhood. I immediately thought, hmmm, that could be possible, and even fun, and get me out of the house, etc.

So, when I get to day care, I say to Sabou, ďBus. Weíre going on a bus.Ē She always gets so excited to go somewhere. We quickly go home and pack up her needed items and head to the bus. All is going well.

Along the ride she starts getting infatuated with pizza, and wonít stop saying, ďMommy, pizza?Ē incessantly on the bus. I know thereís a pizza place not far from the event so Iím like, why not, get the girl a slice. What a total mistake.

She was a complete wreck in the pizzeria. Can anyone say, remember last week? Will I ever learn? She must have punched me in the face about 25 times in that pizzeria, on the sidewalk when I finally literally carried her out of there, and the whole way as we crossed the busy street, since there was no way she would have been safe walking it by herself, refusing to hold my hand.

I took it. I just took it until we were across the street and I knew she was safe. I put her down. She collapsed on the sidewalk, and just sat there. Large groups of young people kept passing us making comments like, ďWhoís the father?Ē I guess because she doesnít look like me? ďIs she dead?Ē Yeah, that was a nice one to hear.

But over time, the girl did finally calm down. I attempted to get her to stand up and walk towards the bus stop. At this point all I really want to do is get home. She immediately starts in again, punching me in the face. And down she goes again.

I am losing my mind. I really am. I am totally not cut out for this.

At some point, she got OK with walking and slowly we made our way to the bus stop and finally headed home. No, never made it to the event.

All I can say is that I feel trapped. Completely trapped. If I donít want to deal with these horrible outbursts in public, then I just need to stay home. Where I just feel trapped.

Her antics continued at home. All I could do was call friends and cry. I had absolutely nothing left.

There are so many factors right now. My health, my upcoming trip to the dermatologist, my lack of support and always just feeling alone. On the one hand, Iím in this parenting thing for the most part alone while Youba is in school, and on the other hand, never getting the alone time I need because I am never alone and Sabou needs or wants something from me all the time, and my complete lack of skill as a parent, lack of patience, lack of whatever it takes that everyone else seems to have when it comes to parenting.

I canít stand being punched in the face. I canít stand it happening in public. No one has ever treated me like this before, and I really have no response. I read what parenting manuals say to do, and I just donít have the strength to do anything but cry. Itís an awful feeling.

3/7/12 Ė No hitting at all today

So yes, getting dressed was another adventure today. She was completely against it. Again, I took care of myself, took my meds, ate my breakfast, and checked in on her periodically. No, nothing. So, I took it upon myself to get her dressed, and we were back into the struggle. Struggling and squirming and yelling. And success. Itís a pattern. She totally struggles to get dressed, and then as soon as she does get dressed, sheís completely calm. ďMommy, backpack.Ē And just like that we are off to day care.

I am beginning to wonder if she is testing me, making sure that I will take care of her, get things done for her even if she is fighting it, feeling out if she can trust me or something, because I swear, once we are done, and sheís dressed, sheís completely fine. Or just worn out from the struggle, I have no idea.

After work, I was determined NOT to bring her anywhere but straight home. And she complied. We did the stairs as she prefers, I just go slowly, and luckily sheís so little, she does too. Inside the house, we kept it calm. I got dinner ready, she played in the living room. We did dishes together. She even pooped in the potty. That was very exciting. We played on the floor together doing puzzles. I was amazed at how many of the words she knows now. We match pictures with words. I tell her the word and she gives me the puzzle piece with that picture on it. She really is smart.

There was a little pushback from her about going to bed, but no hitting. She absolutely did not hit me once.

Another thing I noticed today. She started stringing a LOT more words together. Usually when she tells me about what happened at day care she only mentions one kid, and then gibberish and then either she says the word ĎSabouí or Ďshareí or something to complete the sentence. Tonight she sat there and mentioned like three or four kidsí names in a row and told me that they were playing but that one girl was quiet.

It immediately brought me back to her infant years and what I and my sister used to call Ďwonder weeksí. These were the weeks that they could just drive you crazy, but then you find out that they were just growing or learning something new or something amazing was happening in their developmental process.

So, now, and here, I am deciding to think about yesterdayís tantrum not being about me at all, but about her brain function and frustration at lack of communication, and today being able to start to figure out how to get all these words and thoughts together. She is amazing.

As for Lupus, itís becoming a daily occurrence in the morning that my eyes just donít work so good. They warm up by the afternoon, but itís definitely annoying. Then, Iím sitting there typing at my computer when suddenly my right hand is like in intense pain. I just stop typing for a little while. It subsided. Once again, just Lupus coming out and saying hello. I also find that, in the back of my mind, I am preoccupied with the upcoming visit to the dermatologist.

3/8/12 Ė Laughed Today

Today was a day I wasnít feeling all that good. Random weird pains that would come and go, difficulty walking at times, but nothing outrageous, just the new normal.

And then I laughed. It was with my bossís boss. Something silly hit us very funny and we both just started roaring, like uncontrollably. I got the feeling that I havenít laughed that hard in a long time. It was amazing. And Iíd like to report that I havenít felt any pain this evening at all. See, laughter really is the best medicine.

3/9/12 Ė Road Trip

Today I had to take the day off and head to the university where I was on faculty for five years, staff for three years, and a student for about six years. This same university did not have me in their computer anywhere, and I needed to come down to fill out an I-9. Yes, welcome to bureaucracy.

So, I get the girl off to day care and head to the train station to wait for the hour-long train ride to begin. Luckily it was not a long wait at all this time, unlike last time. Then it was down the many flights of stairs from the train to the street, and the several blocks walk up to the department. Needless to say, when I got to the building I was huffing and puffing like crazy. Feeling like a failure for being on the campus that I didnít graduate from, thank you Lupus, and barely able to breathe from a slight walk. Feeling useless already.

Who is the only person in the building? My former dissertation advisor. Can you say awkward? Only in my experience, not in hers. She was genuinely glad to see me, even though huffing and puffing, I kept trying to tell her Iím fine. I ask about other students, to make sure theyíre graduating. Itís not an easy process even if youíre well. She was completely supportive of me. Told me Iím not a failure, and that life has sent me down a different path on my journey and that is all. Always so encouraging to me. Always on my side, just like I remember her. The only one feeling awkward in the room was me, and thatís my issue, not hers, not the schoolís. The nicest thing she said was that if my circumstances ever change, she hopes Iíd consider coming back to teach part-time. :)

Then itís off to payroll. Down the stairs, and my legs are still a bit shaky and weak from the walk, but here we go. I remember some of the people in the room, and the head of payroll is shocked to see me. As I sit down with the I-9 lady she comes over, ďYouíre not here to do an I-9 are you?Ē ďWhy, yes I am. I got an email.Ē Well, they looked and looked for me in the system, and nothing, itís like I was never there. Very strange. But there you go, thatís why I came, so I could finally get paid for that very last training I did last December.

So, itís time to check out my ID. ďWhat? You came all the way from the Bronx?Ē ďYes, AND I had to take off work, AND I have Lupus.Ē (I couldnít resist the guilt factor here.) Her response was so priceless I just have to repeat it. ďLupus, is that where you get flares? Youíre not going to flare in my office, are you?Ē And there I am breathing heavily, feeling weak, and I assure her, ďNo, I wonít flare in your office.Ē

And like that, my journey is complete. Itís off to an amazing lunch with a friend I always try to see when Iím down there. She is ready to graduate, has a job lined up, and I am so happy for her. She is so great to me all the time, she drives me up as far as she can, we hang out at a mall buying hair product for Sabou and eating ice cream, and I have a much shorter commute home. Good friends are really all that matter in the world if you ask me. And the three trains were there waiting for me, each one. Easiest commute home ever.

Bizarreness exists, because just this morning I got another email from a college in NYC asking me again to come and teach as an adjunct. Another request I need to say no too. It strikes me odd when my old world and my new reality collide. Itís not a comfortable fit. I feel like there are people who remember the old MK, who will not understand this new version, and thereís nothing I can really do about that.

3/10/12 Ė Dinosaurs and Doctors and Cousins

Today was a busy day. First it was off to meet a friend I used to work with some time ago and her family (three kids). We decided on the Museum of Natural History to see the dinosaurs. Donít get there at opening time. Thatís when they let all the bus loads of people in at the same time, and with a stroller and toddler, well, needless to say, it was a little hectic at times.

We went right to the fourth floor to see the dinos. Sabou must have been yelled at by security about 10 times before the other family even showed up. Sheís a tactile girl, needs to really touch the exhibits, which is fine for the exhibits that youíre allowed to touch, but not really for the others.

We meet up with my friends and their kids and keep wandering around the dinos. It was great to catch up, to watch the kids try to interact, not an easy feat at their age. I am still amazed at how well my friends handle three kids when I have such a hard time with my one.

Then a work question came up, something we would have discussed at length all those years ago. And my life has moved on so far from what I used to do, what I used to be so passionate about, and at first I really didnít even understand the question or what she needed. Very embarrassing this Lupus fog, this memory thing that gets you when you least expect it. And I was silent, trying to capture something in the recesses in my mind. Itís a bit disturbing if you let it be so. But the conversation moved on, back to the kids, to the present, ďNo donít touch that. Share. Be nice. Stop hitting.Ē Etc., you know the drill.

She said something to me that I am still contemplating, when I asked her how she is able to handle three and I canít even get a handle on one. She said, ďThe first one was breaking me, but then I had this moment, and I completely surrendered to him, realized that from here on, he is in control, and since then, even the twins have been much easier to deal with.Ē

I am writing this and I still have no idea what it means, or what I need to do to make that happen for me and Sabou. But I canít get that thought out of my mind.

Then itís off to the pediatrician. I had called to find out if I should continue the medicine since the rash, while improved, has not gone away, and Iíve done the proper time period for each listed on the prescription. Their answer, yes, and please come tomorrow.

So, we leave the dinos and head uptown. At the doctor, I am proud to say that for the first time ever, Sabou did not have a freak attack. She even let the nurse put the thermometer in her mouth so we didnít have to have the screaming crying fit of the temp under her arm or in her butt. Wow, big girl!

So word is we continue both medications until it is gone or until four weeks. No longer.

When we get home, sheís in complete tantrum, and I just hold her on the couch until she falls asleep. We both fall asleep for three hours. Wow, an amazing nap that we probably both needed.

Once awake, a visit from Dogomani and her kids, which was absolutely wonderful. There was joy and laughter in my home. The kids were playing, eating, laughing and really enjoying each other. These are the moments that I love. Youba was home too and had brought ice cream! A huge treat for the kids. I need more playmates for Sabou in my apartment to spread their joy to our home. I told Dogomani that she and the kids can come anytime they like. I love when they come. She said the kids also love coming. Sabou did not want them to leave and put her jacket and shoes on when she saw them getting ready to leave. ďBye Bye Mommy.Ē We walked them to the front door and there were many many tears as they finally left. The boy wanted to stay with me and Sabou wanted to go with them. Weíre going to plan a sleepover for Sabou to stay at their apartment. I hope they come back soon.

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 March 14, 2012

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