Beyond the Absurd: Life with Lupus

by Mary Kay Diakite, LMSW

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

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

5/30/11 Ė Striving for a Sense of Normalcy

Saturday was a horrible day, and I would not have made it through without my brother. As I already shared, I broke down crying for the first time since diagnosis, and just knew I could not be alone. I asked for help from a family member for the first time since this craziness started. My brother even commented to me, ďIím glad you finally called and asked for help.Ē He lives just about an hour away, and came right away. He also informed my five other siblings as to what was going on. ďMary Kay is crying,Ē is what I imagine he said. He had no idea what he was walking into, and has no experience with babies (changing diapers, etc.). And none of that matters. It was like immediate relief, just knowing that somebody, anybody was coming down to be with me through this horrid pain, lack of movement, and active toddler who needs proper supervision. It was awesome. He bought us food, played with the baby, and just hung out all day until my husband got home from work. He allowed me to take a nap, which was totally awesome. The pain was everywhere Ė bottom of foot Ė knees, thighs, hips, thumbs, wrists, and shoulder pain like I have never experienced before. Like everywhere.

Over the course of the day, there were minor improvements in the pain, but it was very much still present. When my husband got home, I jumped in the shower, and just let my body feel the hot water, and let it soothe into the pain. That seemed to help, and by 5:30 or so, I was walking normally again. Since our original family plan was to hit the mall by 6:00pm, I asked him if he still wanted to go. He said no. Said it wasnít safe if I had to bring in a family member to help me out with the baby all day. And we stayed home. Both he and the baby fell asleep by 7:00pm, and by 7:00pm, my body is feeling good again. Now, cabin fever sets in, and I need to get out. So, where to go? A movie? Too far and too long. So, I decide to take myself out for a walk and get some ice cream, one of my favorite things to do. It felt so good to walk, to be out of the non-air conditioned Ė hot as hell Ė Bronx apartment. It was a beautiful evening and the streets were alive with Salsa music, dominoes, people laughing, dancing and everything. It felt like I had re-entered the world.

Come Sunday, I am still in pain. In all the same places, but not quite as intense. My husband was home all day, but sleeping and resting alone in the bedroom. He works the overnight shift and needs to make up sleep during the day. Not the ideal situation with Lupus and a toddler, but we do the best we can. A friend had already offered to come and be with me, which was awesome, and I think that helped me get through the day on my own, while hubby slept and I had to care for the baby.

She arrived about 4:30 and stayed well after my husband went to work and baby fell asleep. For the first time in a long time, we had time to hang out Ė just the two of us Ė like two adults without Nick Jr. on in the background. It was awesome. I think support is a huge thing with this illness. Iím thinking I need to do a LOT more outreach for support for the weekends. Working full time is much easier than parenting two days a week. Iím not alone, thereís air conditioning, thereís lot of nice people around me who help me when I need. When Iím at home, in the hot apartment, itís just me and the baby fending for ourselves. Sigh.

Come Monday, today, and my legs are fine, no pain. My hands, wrists and fingers are fine, no pain. Itís just the left shoulder which expanded to include the left part of the back Ė for the first time, and OUCH is all I can say about that. So, I took it slow. It was hard to keep my eyes open, but since my husband was sleeping, I needed to watch the baby, again.

There have been quite a few revelations this weekend. 1. I need an air-conditioner and soon. If my whole summer is going to take place in this living room, then it needs to be a lot cooler for both me and the baby. 2. My friend told me about counter-top dishwashers. Because itís a small kitchen in a small Bronx apartment, a regular dishwasher is not an option. But, this, this could work! See, there are more days than not that I am unable to hold the dishes and really scrub them and they just pile and pile up., which leads me to 3. Housekeeper. Yes, I think itís time I get a housekeeper, just like one day a week, for a few hours, just to keep this place clean. I canít keep up, with the food, the dishes, the laundry, the toys, the spills, the bathroom, etcÖ Iíve already reached out to see if anyone knows anyone, but have not received responses yet. Since I am working full-time now, and have the second paycheck coming in, and who knows for how long, I figure now is the time to take extra good care of myself. For real. So, this will be the next conversation with my husband.

Now for the weirdness of the day. My eyes.

So, I’m at my local support group last week, and one of the ladies speaks up as we are going around the room sharing the names of the medications that we are taking. She says that she refuses to take “that medicine where you have to go to the eye doctor every three months.” Everyone in the room seems to know exactly what she is talking about, judging by all the nods and ďmm mmmsĒ around the table. So, I say, “Oh, what medicine is that?” It turns out that she was talking about the anti-malarials. Pacquinil or something, which I think is the same thing as Hydroxochloroquine, which is the name of the medicine that I just got put on last week. I respond, “What? That’s what I’m on and my doctor told me nothing of this.”

So, a little history. I started getting blurry vision in November 2010. I went to the eye doctor in December 2010 and he looked at my retina and said, “Hmm, you’ve either been on anti-malarials, or psycho-drugs in your life.” He could see something in my retina. Now, I’ve been on both. Mefloquine for two years when I was in the Peace Corps, and for three summers when I volunteered in Rwanda and Congo. Zoloft, Risperadol, and Zyprexa when I kept being misdiagnosed with Schizophrenia until they finally figured out that my depression and psychosis were linked to my hypothyroidism, and could be solved with Levoxyl.

So, anyway, the eye doctor says that there is nothing wrong with my eyes, but that I’m getting old, and like everyone, I’ll probably need glasses at some point in my life, but not yet. He says, come back in one year.

This morning, I noticed these bright flashing prisms on the left side of my left eye. This afternoon, the prism moved to the right side of my right eye. So weird. Tomorrow I am calling the eye doctor right away. Here we are just five months later, a Lupus diagnosis and more weirdness in my eyes.

So, my husband slept all day, until maybe 3 or 4, when the baby had had it with me. Weíd been together non-stop since she woke up at 6:30am, and neither one of us took a nap. Thatís a long day to hang with someone whose shoulder and back hurt. When he woke up and was playing with her, I jumped in the shower for just a little relaxation and relief. I told him that I was walking fine, and would he like to try to go to the mall today. He said, ďYes.Ē And since neither my legs nor my hands, wrists and arms were hurting at all, I even offered to drive. NORMALCY. It felt so good to drive; to get OUT of New York City; to see trees and the river, and be on highways, and park in a parking lot, and walk through a mall. Now, I canít lie to you, by the time we got to the mall, my right hip was acting up and a slight limp started, maybe from working the accelerator? I donít know, nor do I care. I took that limp with pride. Pride knowing that I had driven myself and my family to the mall, and just that little accomplishment meant so much to me.

And we went shopping for air-conditioners, and for counter-top dishwashers. Talked to salespeople and collected information before we decide what to do. Like, completely normal stuff. And then thenÖ

We went out to dinner! The three of us, as a family. Cheesecake Factory. Another moment of normalcy. It felt sooo good. Sabou was so well-behaved in her little high chair, being her adorable charming self. It probably felt normal for her as well. To be out to dinner with Mommy and Daddy. I need to take note of these things, and be sure that we do these things periodically Ė for all of us Ė but mostly Ė for her.

After dinner, we headed home. There was a CVS on the way, in NJ. There was a parking lot. There was next to no wait, and I had my Prednisone within 10 minutes, with no drama, like I had experienced in the Bronx. Now, this is making me think that the $8.00 trip over the bridge may just be worth it, if the level of service is so increased and the level of stress is so much lower. As I said, while I am working, I think I need to just take advantage of everything now.

Since I donít have full motion in the left neck because of the shoulder pain, those mirrors in the car come in quite handy, as does having someone in the passenger seat. I donít think Iím ready to drive on a regular basis. I donít think Iím ready to drive long distances. I donít think Iím ready to drive alone with just the baby in the car. But, God Damn It All, today, I DROVE, and it felt good. It felt normal. It felt like a little piece of myself prior to diagnosis came out to say ďHi. Remember me?Ē

5/31/11 Ė Eye Update and Asking for Help

So, this morning I wake up and itís not bad. Thereís pain in the right wrist, which is troublesome as it is my writing hand. Thereís also the left shoulder pain which has just decided to stay I guess. Early in the morning I get a call from a co-worker stating that she is not feeling well and will not be coming to work. So, Iím left to do her piece of the presentation to the final site visit. Now, Iíve heard the presentation many times, and Iím feeling pretty good about doing it, but I also needed to tell her that I will probably not be able to take notes as the right hand is not working. I was sure that wouldnít be a problem and that someone would step up and take notes for me.

I arrive at the site visit with my little right hand speech prepared, and it turns out that she had already let them know to expect it and the notes I needed got taken. It took forever to sign the sign-in sheet, but what else could I do?

After work, I went direct to the eye doctor; luckily he was able to take me today. He said that most likely the aura that I had experienced was a migraine and not at all related to Lupus. He also said that I seem to be becoming nearsighted in one eye and may need glasses down the road. He wants me back in three months. He also informed me that most likely the aura is also not related to the medications that I am on (Prednisone and Hydroxochloroquine). He said that nowadays you very rarely see toxicity caused by these prescriptions. Then why do we need to see the eye doctors every three months? Iím thinking that not everything is lining up here.

And in that moment, with this doctor, now my fourth doctor (PCP, Rheumatology, Dermatology, and now Ophthalmology) I have come to a conclusion. I think that not many doctors truly understand nor know about Lupus; and that doctors do not like not knowing; so to cover it up, they go to the places that they know: nearsightedness and needing glasses, in this example; Actinic Keratosis and liquid nitrogen in the case of the Dermatologist. And in that moment I became even more determined to find integrated care with folks who specialize in Lupus whether they be Rheumatologists, Dermatologists, or Ophthalmologists.

However, he did write a note to the new Rheumy I am seeing next week, who should be in this integrated network that I am hoping for, which I found very nice.

I am starting to understand the total frustration that people with Lupus feel when they keep turning corners to meet with other doctors who tell them ďItís not Lupus.Ē Thatís happened to me twice now. And even the limited research Iíve been able to do on the internet has shown me that auras without pain are more common in people with Lupus. Donít even get me started on the skin rash ordeal. I am so hoping for a good experience next week with the new Rheumy.

As for the air conditioner and dishwasher update: well, we plan to return to the mall this weekend, on a day that I can to pick up two window fans for the living room and one air conditioner for the bedroom.

After dropping and breaking yet another glass while attempting to do the dishes today, and then cutting myself on the glass (blame it on the right wrist) Iím still thinking the dishwasher will be a good idea, as will the housekeeper.

I also had a good conversation with my parents and my sister today. My mom is determined to come and help out. My dad keeps telling her not to because I havenít asked. My sister told me that if I want help, I need to ask because nobody can tell if theyíre being intrusive or helpful. I have a lot to learn. Here I am venting in past posts that no one has come, and they have been wanting to come but waiting for the green light from me. Why is asking for help so hard?

Well, need to let all that go, because come the weekends, until I can hire help, I need help. There, I said it. Now I need to say it out loud to the folks who could actually come and help.

Learning a little more with each passing day.

6/1/11 Ė Facing yet another hard day

I woke up this morning and the left upper arm was in such intense pain that even though the left hand had movement, it was too painful to use it because whatever way I moved it caused a ton of pain in the arm. I lost it again. Crying again, for the pain, for the fact that my life is this now, facing this, whatever it is, something different, on a daily basis, and questioning if I really have the strength.

Somehow, I make it to day care and to work on time. My boss comes over and asks how I am, and immediately notices that I am in pain, and says so. I lose it again. In front of him, trying to persuade him of how hard I am trying but that it gets so hard.

I already had planned to go to lunch with another co-worker suffering with a chronic illness, and I think that was a very important thing to do. Just to talk with someone else, who has been dealing with a chronic illness for over 10 years. We talked about acceptance, and learning to live within the confines etc. Itís just important to have people to go to for support, even at work.

As the day progressed, the left hand swelled up like a balloon and stopped working. The left knee started to be a little painful, but not for long, luckily. So, I made a decision. Since this job has an Employee Assistance Program (EAP) and tons of services are available for free, I decided to give them a call when I got home from work.

ďIs this chronic illness impacting your work?Ē

ďYes. Sometimes I have to type with one hand and need help turning on the computer. Sometimes co-workers have had to open my pill boxes for me, and help me get my jacket on.Ē

He stated that my needs require more than a quick fix, and the short term services available through EAP. He recommended that I be referred to a case manager, who will help me find a counselor who accepts my insurance. So, the job that I just quit (family case manager), because of Lupus and my inability to handle the job, has led me to receiving my own case manager. You gotta love the irony. Once I hear from the case manager I will ask about housekeepers and nanny options though.

And I remembered, when I first got that case management job, working in medical social work for the first time, and spending a lot of time in hospitals, in public assistance, and at SSI/SSD with my clients, I kept wondering why? Why am I suddenly learning all about medical social work? Who in my personal life will be in need of this knowledge? It never occurred to me that it would be me. Yet, here we are.

When I got home, and ate dinner, my arm started to move again, and the swelling in the hand finally went down. Lupus is completely and utterly unpredictable, thatís for sure.

6/2/11 Ė Asked for Help Ė And It Worked

So, inspired by my sister, who had requested that I ask for help, I drafted an email to my family, an open invitation to come down to help any weekend they have available, be it an afternoon, all day, or all weekend. Since sending the email, I have received three responses. My sister is coming this Sunday; my parents will come next weekend and stay for four days Ė and attend a Lupus seminar with me at a local hospital; a sister-in-law will come the last weekend in July. Support is what is so important. And if on those days that someone is here my legs are working, then we can go somewhere fun with my daughter, a childrenís museum, a park, a pool, or whatever. If the legs are not working, then they can either take her there while I stay home, or we can chill out together in the apartment. I can just feel possibility again.

When I woke up in the morning, there was very little pain. I had full access to my legs and my arms all day. Wow, what a treat. I got some good advice regarding canes at work today, and since I donít need help walking every day, I can buy a collapsible one just to have on hand if the legs start acting up. I went out to lunch and didnít have to talk about Lupus or explain why Iím not graceful; we just laughed and laughed and laughed, and I felt like my old self Ė so much so, that I almost forgot to take my medication. Yes, thatís how the problems can start, I think. You start to feel good, and you forget why because most of your life has been spent feeling good. I did remember though, and took that pill.

One thing I can say that I am grateful to Lupus for is my diet. All my life my diet and eating habits have completely sucked. Itís true; a junk food junkie for sure. But, now that I have three pills to take per day that require food at the time of ingestion, I am forced to eat three solid meals a day. And with this new routine, I find I am not hungry between meals and the junk food overindulgence has stopped. I am literally eating three meals a day now. Itís so unbelievable to me. I am also grateful to this new job because I actually am able to take a lunch every day and get that good meal. No more client crises, long waits in doctor offices or other governmental social service agencies, the unexpected walk-ins, like none of that. I have a desk job, pre-scheduled meetings, and the freedom to take a lunch. That is also so helpful with a disease like Lupus where I need to be taking good care of myself.

6/3/11 Ė Lupus Fog?

So, I woke up this morning to an incredible headache, like this circle of pain directly over my right eye. My vision was blurry and it was really hard to keep the right eye open. My brain also was just not functioning well. All I can say is, Lupus Fog? Iíve heard about it, Iíve been hoping I would never experience it, and yet there I was - not knowing what to do. I felt weak, shaky, and little nauseous. Somehow through it all, I was able to call my sister. She knew just what to say and how to say it, very calmly. ďDid you eat?Ē And with that simple phrase, it was like this light going off in my head, which otherwise was not working. Oh my goodness. I can take my medicine and eat. And thatís exactly what I did.

It definitely helped, but I also definitely felt slower today, not due to pain. The headache after jumping around for a little while did subside. The only real pain to speak of was a tiny bit of discomfort behind the right knee, but nothing too bad.

I went to work a little concerned about Sabou, as she had arrived home yesterday with a slight fever and completely lethargic. But because of the teething, I wasnít surprised at the low grade fever. Youba stayed home with her for a little while, but because she woke up so much like her old self, we both figured it was the teething and he sent her on her way.

Late in the afternoon, I was checking messages and found out that day care had been calling me since 3:00 to let me know that she was still running a fever, and now had these bites on her arms and legs. I immediately called Youba and told him to pick her up right away.

When I got home from work, I went direct to day care, telling them that when I changed her diaper this morning and put her clothes on, I did not see these welts. Youba confirmed that he also had given her a diaper change before sending her off and he also did not see these welts. They are so big, theyíd be hard to miss. Now, Iím freaking out. NYC is known worldwide for its bedbug epidemic. ARGH!

So after consulting with an old friend in the bedbug detection field, my mom, and my sister, I decided to just get her to the pediatrician as soon as possible. First thing Saturday morning, that is where we are going.

Now, if my arms and legs donít work, this will be a little complicated. But, hey you never know. At least Youba is home tomorrow and can help out if I need. Taxicabs are available too. I donít usually use them, but at this stage in my life, why the hell not? One thing Iím sure of is that this is exactly not what I need at this time. So glad my sister is coming on Sunday.

6–4−11 Ė A Family Walk

Not much pain this morning, just a little in the right hip, so off we went as a family, walking to the pediatrician. It felt wonderful, even with the little limp, to walk down Grand Concourse, with Youba pushing the stroller, out for a family walk. I loved it.

The pediatrician basically said that she got bit by an insect and that I need to stop worrying so much, and then he gave her a lollipop.

We also spoke a little about my Lupus. He seems assured that Iíll be fine because nowadays the medicines are so much better for people with Lupus. I hope heís right. I told him about the amount of pain, but Iím not sure that people who have never felt it can really understand how intense it can be. And Iím the one reading all the on-line Lupus forums and the firsthand testimony of life with Lupus on the terrible medicines. I think whatís written in medical journals on paper can look a whole LOT different in the real world on people.

Then we did the walk home. I took my time and went slowly. Yet, by the time I got home, I was in a lot of pain. The right hip, just achy achy legs, and the middle finger on each hand stretching in the palms. I didnít mind the pain because the walk was so nice, and fell asleep in Youbaís lap.

Now comes the afternoon, and after showing a normal temp at the doctorís office, Sabou now has a 102.5 fever. ARGH. I call my sister to let her know not to come tomorrow because Sabou is sick. She has two kids. It doesnít make sense to infect her and have her infect them. Sabou fell asleep around 6pm, wonder how long it will last.

Over time, the pain has decreased. Rest is an amazing medicine.

6/5/11 Ė BJs for the first time in months

Sabou woke up at 99 degrees, and my legs were working, so we decided to hit the mall. We had run out of diapers and it had been months since we did a big BJs run. Luckily, itís just down the street, so I took the chance to drive again.

By the time we got to BJs, both of my pinky fingers were in intense pain, swollen like anything, and the pain was spreading to both ring fingers. Needless to say, I was completely useless handling the large BJs containers of things. So Youba pushed the cart with Sabou in it and I pointed to things I wanted. Unbelievable. But, we did take another look at the air conditioners and will plan another trip to pick one up. :)

So, I drove home, which was a bit complicated with the painful hands, but since it wasnít far, I figured why not. And by the time I got home, my hands were in so much pain and I was just exhausted, so I went in and collapsed for a two-hour nap. When I woke, the hands were still swollen and painful and the pain had spread to the bottom of my left foot, so now, not only couldnít I handle simple things like dishes and carrying the baby, I was limping, yet again. Sigh.

Then Youba and Sabou fell asleep and took their four hour nap, and when they awoke, Sabouís temperature was back up to 101.9. What to do? I have to go to work tomorrow, and I HAVE to get to my first appointment with my new Rheumatologist. I am so hopeful that this one will work out and I will get integrated care between all of my providers. But, we just have to see where she is and how she is feeling, and how Youba is feeling after his overnight shift. Complicated? Yes. Definitely.

6/6/11- Good Day; Good Doctor; New Diagnosis; New Counselor

So, for about the third or fourth day in a row, my legs had absolutely no pain. I was able to walk without a limp, and even passed people on the sidewalk, and ran a little for a train. I also walked over 30 NYC blocks, up Fifth Avenue, just because I could. It felt SO good to do that, to be able to do that. Like a total accomplishment.

And also, I should note here that my arms are completely working and I have been typing without pain, (minus the pain in my pinkies and the ongoing shoulder) all day. Itís been like a joyous day, like a normal day. I was smiling and interacting and laughing, etc.

The only downside to this good day is that my new Rheumatologist appointment was today. I was afraid that like when you bring your car in because itís acting up and making noise, and when you get there the mechanic canít get the car to make the noise, then he canít help you, that the same would apply to Rheumatologists. Luckily, this was not the case.

He is a Lupus Specialist, and works closely with a Lupus Dermatologist. He listened to me, examined me, had a conversation with me. It was awesome. He took more blood work. Because my absDNA was so incredibly high, he wants to make sure that it was an accurate reading. Normal range is between 1 and 9, and I scored over 800. I told him that I was not surprised because when I was finally tested for Hypothyroidism, the normal range was between 1 and 3 and I scored 1000. He said, ďYouíre an interesting specimen. Thatís why I went into this field.Ē He will also be attending the Lupus conference at Lenox Hill Hospital next week, so he may end up meeting my husband and parents. And I think Iíve found the right doctor.

Beyond Lupus, heís checking me for Hashimotos and Myositis, which he believes I have. Hashimotos would be connected to the Hypothyroidism, and Myositis seems to be a rare muscular condition affecting the so-called voluntary muscles, the muscles you consciously use on a daily basis. He also asked for another urine test and did an EKG. Next will be a lung x-ray, because of the positive PPD so long ago. I go back to him in two weeks, and I canít wait.

While I was in the waiting room, the EAP case manager called me and gave me the phone number for a counselor who takes my insurance who happens to have evening hours. So, even though today I am feeling absolutely awesome, I remember last Saturday all too well, when all I could do was cry and sleep and pity myself, and I know I need this support. I donít want to end up crying on the phone to my brother again because I canít handle it. Letís take some preventive measures. I also want to discuss with the counselor options regarding housekeeping and nanny on the days when my body just doesnít work. EAP is not the place for that, donít worry, I asked, but maybe the counselor will know something, or where to go.

I walked and I walked, not knowing what the ramifications would be on my body, and it felt SO good. I just want to report that at this time, hours later, only the bottom of my left foot hurts. The legs and arms are completely fine. Just the left shoulder is acting up, but even that isnít so bad. Who knows what tomorrow will bring.

6/7/11 Ė Lessons Learned

For the record, my legs are still working, like fine. I really think the medicines are starting to kick in. Itís been a joy to walk, to pass people on the sidewalk, to not limp down the stairs to the subway, to choose stairways over elevators at work, all of it.

Unfortunately, the left hand is not yet on board. I woke up with intense pain in the left middle finger, which by the time I got to work, had spread to the whole hand, rendering it mostly immovable, swollen and useless. So, the morning was spent doing the one-handed typing thing, and just taking things slowly. Over time it subsided, you just never know, and by lunch time I was pretty much fine. A co-worker recommended that I get a sling for those days when the arms and hands act up so that I donít have to carry it around like a sling, it can actually be in one, and may be easier. Iím thinking sheís on to something, and that it could be easier on my co-workersí eyes as well.

So, today was a forum at the United Nations. And here I am, sitting in a room where the panel members consist of President Paul Kagame, of Rwanda, where I volunteered for three summers, Annie Lennox, of Eurhythmics fame (I was a huge fan back in high school in the 80s), and Alicia Keyes, no explanation necessary. Like I was just six rows behind Annie and Alicia in the audience, until they went up to be on the panel. Every day life is a surprise, and I am grateful for all of the experiences.

But, then thereís the Spoon Theory that I just got turned on too, and I realized, I used way too many spoons today. I arrived at the UN early, as stated in the invitation, because every event Iíve ever been to there has had a huge line down several blocks, outside, of folks trying to get in. Well, there was no line. So, I had way too much time to spend, and it didnít make sense to leave and have to contend with security again, so I wandered the grounds, through the exhibits, the meditation room, and the shops. Why I thought I could do that successfully, I donít know. I bought gifts for my daughter and one of my nieces. Why I thought I could carry them successfully, I donít know. I was feeling completely weak and tired and the event had not even started. So, I found a comfy chair, in the air conditioned building, and plopped myself in it, trying to gain strength and regroup. It kind of worked, and the forum definitely perked me up a bit. But then, it was time to go home. Home is a subway ride. Sounds simple enough, and rush hour has passed. Now, Iím really thinking Iíve got this. Well, remember, Iím dragging around my body, which in and of itself is not easy, and this now made heavy and bulky briefcase full of work stuff and gifts, which I definitely do not have a spoon for. And I walked to the nearest subway station, several blocks from the UN.

It was a local train that would take me to the train which would take me home. Iím still thinking; I can do this.

Well, I forgot how intimately my life is entwined with the NY Yankees. See, I live within walking distance from the Stadium, and the Red Sox are in town. No joke. Itís hard enough living near the stadium when you are a Red Sox fan (donít say it too loud in my neighborhood), but exponentially worse when they are in town playing the Yankees.

All of the trains were PACKED, with New Yorkers, trying to commute home, like myself, and all of the Yankee fans thrown in, being drunk, loud, and touristy, enjoying the Ďexperienceí of riding in a NYC crowded subway, getting stories to share with friends and colleagues, what itís like in NYC etc., and guess what, there were NO seats.

Now, what? I need to hang on to a pole, or I am going to fall. Iíve got this huge heavy bulky briefcase that Iíve been carrying with my hands because of the ongoing never ending shoulder pain, which has caused the left hand to swell again, stop working, and stop moving.

I got myself a pole, but I need to hold it at the top because of all the people already using it. Now, holding my arms up, and sometimes getting them up above my head usually runs the gamut between painful and impossible. Well, I have no choice, and I get that right arm up there somehow and hold on for dear life.

I am smushed up against four young, beer drinking Yankee fans, who are being loud and obnoxious in ways they canít even imagine. Sharing their travel stories from Mexico, talking about those Mexican women, way too loudly, on a train headed for a neighborhood in the Bronx where most people speak better Spanish then English. It was so offensive.

And the train pushed on, and the train got hotter as more people crammed in at every station, and I just declined quickly: getting weaker, the left hand arm and shoulder doing its best to support the briefcase and the right arm completely vertically outstretched like it hasnít been in a long time, and the legs, feeling every short stop, quick movement forward, and people scrunched all together.

I am the stop AFTER the Stadium, and just had to hold on. Once the train finally emptied out at Yankee Stadium, I was able to place the briefcase on the floor and grab a pole that didnít require the vertical stretching. When I left that train, I was so incredibly weak, I just had to walk very slowly down the stairs and up the hill, up the four blocks to my apartment building.

Lesson learned: never forget to check the Yankee schedule. Reminder to self: Avoid the 4 train at all costs during Yankee season.

When I got home, Youba was preparing dinner and doing dishes and had installed the air conditioner in the babyís room. I love being married to him more than I can say. I took a shower to wash off the day, the train, the fatigue, and the pain. My hand came back. My strength slowly returned. I took my pill, sat down and ate.

6/8/11 Ė Auras Again Ė Migraine on the way?

Iím typing with one hand tonight, so this entry may be short. Left wrist started hurting after work and it wonít move much.

So, this morning, the aura came back, while I was on the subway platform waiting for my third train to work. At least I know what it is now, but Iíd much rather have them at home. It was hard to concentrate and balance myself on the pole because everywhere I looked there were these dancing bright lights affecting my vision. I couldnít wait to get to my stop. Much like the last one, this one lasted about 15 minutes and was over by the time I got to my cubicle.

Now, the only thing on my mind is when will the intense headache and brain fog hit? The last time it was about two days later, I think. And what happens if it happens at the job, and before Iím due to take another pill?

You see, today is the day I am scheduled to introduce myself at a large meeting in my new job, and facilitate a small group activity. I get through the days with or without access to my limbs, but, my brain? Thatís not optional. Thatís how I got this job.

So, luckily the brain wasnít too bad off, but I did find it hard to summarize the groupís comments. Luckily a group member stepped up and took fabulous notes.

Still no headache nor brain fog. Not sure when or if that shoe will drop.

6/9/11 Ė The Other Side of the Desk

Today has been virtually pain-free all day. There was a tiny bit of pain in the left wrist, which subsided and by the afternoon I was typing with both hands just fine. I have not limped now in about a week I think, and it has started to feel normal again not to limp, and I have been able to run for trains when necessary.

Had lunch again with a co-worker with chronic illness, and wow, like night and day, what I was able to share with him today. He explained that itís a normal part of the process towards acceptance of the illness. He had figured Iíd start to feel better over time, with the medications kicking in, and with my own psyche. He helps me to keep going.

Today was exciting because it was my first meeting with my social worker, my very own social worker. The irony does not escape me at all. After a long and I would say successful career in the field, I am now very much in need of someone else with my skills.

Like my fear with the Rheumatologist, to show up on a day when I feel good and not overwhelmed, I was wondering how he would be able to properly assess my needs. Well, I think heís a good fit. Heís cognitive-behavioral, problem-solving stuff, which is what I need.

He recommended calling my health insurance to see about what home care, if any, since Iím not disabled, I might be eligible for. Iím pretty sure Iíll end up just having to hire someone. But, it canít hurt to try.

I asked that we meet on a weekly basis for the summer, because once the fall comes and Youba goes back to school, I will not have this flexibility and freedom, and will need to pick up the baby from day care every day. I am viewing this as preventive, gain as much knowledge, wisdom and strength now to carry me through his Fall semester, a time when I also need to be thinking about my own Fall semester, and dissertation process.

I am at a stage in my life when I need to be taking very good of myself, and taking advantage of every opportunity to do so as it comes, when it comes.

I did get caught on another Yankee train, still havenít learned that lesson, but it was not nearly as bad as the other dayís journey, and I even had a seat for part of the trip.

Still no migraine, no headache, no brain fog, and I still keep wondering, when will that shoe drop and where will I be when it does? There were moments of cognitive slowness today. I could feel it, I tried to mask it. Sometimes itís hard to pronounce words correctly, sometimes the wrong words come out, sometimes I just feel slow in my cognition. I am watching this very closely, with the eye issue and the possibility of more migraines. One place that Lupus sometimes goes is into the central nervous system. If my brain goes, I donít know what I will have left.

6/10/11 Ė Completely Symptomless Ė Can it be true? And for how long?

I woke up this morning with absolutely no pain to speak of anywhere. Like my old normal self. I so hope that this is the normal course of Lupus, that you go through a flare, for however long, and at some point, land back in a place beyond the flare, back to the way life once was. I have no idea, and I donít want to be unrealistic.

But, I want to say that I had absolutely no symptoms today at all. I had to keep reminding myself to take my medicine, because it was like I totally forgot I had any.

I smiled and laughed and made jokes at meetings, walked between office buildings where the meetings were held, and had a little reminder of what life used to be like.

Donít worry, I did take all my medicines today, it was just a very conscious process to tell myself to, instead of running to them for relief.

Now, Iím in a weird place. Iíve got my parents driving over four hours to come and help me this weekend, based on that horrible weekend I had two weeks ago, and Iíve got full access to all of my limbs. I feel guilty that they are coming, if I donít really need them, and yet I canít wait to see them. Itís going to thunderstorm all weekend, so even if I can walk, it will still be difficult to take Sabou anywhere fun. Weíll all just be stuck in this small apartment together without an air-conditioner, since every place Youba and I have gone to since the heat wave seems to be sold out.

My Mom reminded me that just because I woke up without pain today doesnít mean that I wonít have pain tomorrow. And sheís right. There is absolutely no way that I can predict what my body will do on a daily basis. And thatís whatís so hard for me right now.

I need to remember to take these symptomless days as gifts, and not as norm, and be prepared for anything.

The only thing that I seem to be dealing with now is hair loss. My usual thick head of hair is starting to look a little thinner and I find hair all over the place. Iím OK with that symptom; Iíve got tons of head scarves, if it comes to that, and there is no pain involved.

My SPF 30+ clothing arrived and I canít wait to try them on.

Hoping for more days like this for myself and others living with Lupus.

6/11/11 Ė Parents in town and still no pain

Saturday is usually emotionally my worst day. Youba took an extra shift last night, and so I knew heíd be sleeping all day, which leaves me alone with the baby, which can be troublesome depending on what my body can or canít do, and over the course of the day, knowing heís in there sleeping soundly, sometimes I get a little jealous of his ability to sleep.

But, not today. As soon as he came home from work, we headed out to the local mall to check one last time for air conditioners, and finally success! Just the fact that we had that time together in the morning before he went to sleep, put me in a better place emotionally, and just knowing that in a couple of hours my parents would be arriving to Ďhelpí out, put me in a better place emotionally, and I could feel myself being much more calm with Sabou, and in general a better parent.

Now, we cannot discard the fact that for some reason I am still symptomless; like there is no pain. You know, the usual stuff in the left shoulder, but thatís it, and that doesnít really count because itís just always there.

Having my parents here is awesome. They play with Sabou. My mom and I walked to the store together. We shared dinner together. We watched movies together. We ate ice cream together. And the only symptom that I can really speak of today was this annoying headache that diminished over time, and the left shoulder. They didnít care that I wasnít really in need. I think they were even enjoying just being here, hanging out and playing with the baby.

If this symptomless life continues, then Youba and I are playing with the idea of driving to see them next week for Fatherís Day. A trip to the beach in Rhode Island, and Iíve got the SPF clothing all ready to go. Hopeful, but not blindly; weíll see how the week goes. But it would be my first long road trip since this ordeal began; another step towards normalcy?

Also to let you know, not only did the SPF clothing arrive, which are absolutely gorgeous, and Iíll wait a couple more paychecks and then order some more, but also the book ďDespite LupusĒ just arrived. Itís one womanís journey with Lupus and how she learned to live well with it. Iíve started reading it and noticed it has little self-reflection questions/activities for the reader.

The first one is:

Make a list including everything that you want to be able to do, say and feel once youíre on the road to Ďliving wellí.

So, hereís my list, not necessarily in this order

  • Travel back to Mali
  • Figure out how to handle the sun and heat in Mali
  • Figure out how to handle a plane trip again
  • Drive long distances again to visit friends and family
  • Take Sabou on long train, plane and car trips
  • Be able to take Sabou wherever I want whenever I want
  • Educate people about Lupus
  • Write my life story in a book - up to and including Lupus
  • Go on vacation with Youba and Sabou
  • Be able to play with Sabou as she gets older
  • Trips to Milwaukee
  • Trips to Rochester Ė Buffalo Ė Niagara Falls
  • Trips to Las Vegas Ė Arizona Ė New Mexico
  • Trips to Louisiana
  • Trips to San Francisco

Thereís a saying in Bambara, one of the languages in Mali, ďdooni dooni.Ē It means little by little, kind of like Ďone day at a timeí maybe. Writing these wishes and goals makes me think, just take it dooni dooni.

6/12/11 Ė Another Day Pain-free

Iíve lost count of the numbers of days in a row that I have not experienced joint pain. What Iíve decided to do is to consciously remind myself not to expect this, not to ever think that this will become my norm again. I donít want to forget to take my medicine because I feel well. I donít want to take my joints for granted and just assume theyíll be there and working, because I now know that I never can know when they will work or not.

I am so looking forward to the Lupus conference on Monday night. I am so glad to have my parents here this weekend, and wish there was some way that they could just move in with us. Just having them here, other hands available to help out with the baby and the food prep and the house up-keep, calms me down immensely and turns me into a better parent I think. Unfortunately, it is not a possibility at this time, and way too much to ask of them.

My Mom found the ďDespite LupusĒ book and is hooked. She keeps quoting it to me and encouraging me to keep reading it. She loves its emphasis on coping and hoping.

6/13/11 Ė Back to work and still pain free

Left the baby with my parents for the day so they could play with her, and scheduled my first ever babysitter, a woman whose sister has Lupus. And after work, we all headed out to the Lupus Conference. My husband met us there after his dermatology appointment. Seems heís now having a skin issue. They took a biopsy (of course Ė he went to mine) and weíll know more in three weeks.

I canít tell you how wonderful it was to sit at that conference surrounded by my parents and my husband. It was not an easy thing to listen to. As Iím learning quickly, there really isnít much good news. The conference was not only about educating people about Lupus, but really also about encouraging Lupus survivors to volunteer for more clinical trials, especially in light of Benlysta.

The presenters took us through Benlysta, Cellcept, and the new drugs and study currently being investigated. There was time for questions and answers. The question that stands out the most for me was about nephritis. A woman stood up and asked how can those of us who do not have organ involvement yet prevent ourselves from getting nephritis. What can we do? Go gluten-free, for example.

Well, the response was not encouraging. Basically the doctor reminded us that just like itís not our fault that we got Lupus, it is not our fault if we develop nephritis. Fifty percent of adult Lupus survivors will experience organ involvement, and Lupus seems to go to kidneys first. So, while the presenter did not say that good diet and exercise was useless, she did make it crystal clear that it could not guarantee complete prevention of nephritis. I walked away feeling like Lupus was just going to do to me what it was going to do, and I would just have to go along for the ride.

And yet, the woman sitting across the table from me did take Lupus by the hand. She refused to take Prednisone and Pacquinol, and instead chose to take 3000mg of Fish Oil a day, and then slowly reduce the amount. She swears by the Fish Oil and showed me her once arthritic fingers which now look completely normal.

I am not so adventurous when it comes to alternative medications. And since I am still so new, I think itís important to get a true sense of how the current medications affect me before moving into something much less monitored.

6/14/11 Ė Not Quite Pain Free Anymore

OK, sheís back. Today the left knee, left thumb and left pinky have been acting up. If I am to compare to the pain of several weeks ago, I would say that this is a walk-in-the-park. I also think Iím starting to have GI problems again. Probably due to the medications, but I am not sure.

The slight pain of today was enough to remind me that I have Lupus and that this is my new norm. After work I just came home and completely crashed on the couch for about two hours.

So, this all is making me wonder if they will have to up my dosages of Prednisone and Hydroxochloroquine, and it is also bringing back that familiar feeling of fear. Fear that I will have that intense pain again, and not be able to handle it. Fear that I wonít be able to continue working if that intense pain comes back.

I think my hair has started to fall out. I still keep finding it, around, on things, falling on tables at meetings, etc. It doesnít hurt so I donít mind it near as much as I mind the pain, but I wonder if this is just the beginning, and really I have no idea what to expect.

I have to say that Lupus is definitely a roller coaster of emotional and physical symptoms. I applaud anyone who has dealt with this disease gracefully and I can only hope that I also will join those ranks.

The other thing I have to say is that I REALLY miss my parents. I came home to a quiet house. Youba was sleeping and I went to day care to pick up the baby. I miss my parents, their energy, their laughter, the help they provided, the company, to not have to do all of this alone with Youba. Maybe Iím spoiled by the extended family I have in Mali, where everybody lives together, cooks together, takes care of the chores together and watches the children together. You are never alone and there lots of hands to help. Not so in the US. We rely on nuclear families, and for someone with a chronic condition, Iím not sure that it suffices: too much on the sick person and too much on the well person.

The babysitter worked out fabulously. I can only hope that sheíll also be available for July 5th and 6th, when day care is closed. I would also like to think about using her on weekends, to help me with chores and Sabou. Just need to see where the pain is going to move today.

6/15/11 Ė Pain and Complete Exhaustion

Today the left thumb swelled like nobodyís business and turned a bright color of red. It barely could move. The left pinky was also a little sore as was the left shoulder. Again, nothing like before, but definitely noticeable.

At work, I had an all-day meeting to attend, and by the end of it, I was just exhausted. I just had to go right home, pick up Sabou, take my pill, eat, and make sure that Sabou was fed. Somewhere in this plan I completely passed out on the couch, Iím thinking around 6:30pm. Youba woke me up around 8pm so he could take his shower and start preparing to go to work, and I got the baby to sleep by taking her to bed with me, and we both passed out. I was simply exhausted, thereís nothing else to say.

Before that happened though, got phone calls from both my parents and a friend. The friend wants to hang out on Saturday in an island park in NYC. The parents want to meet somewhere half-way between NYC and RI (i.e. Connecticut, CT) for Fatherís Day since we can no longer go to RI this weekend as originally planned. And that trip got cancelled not directly because of Lupus, but because the mice in our apartment are just taking over, which is an indirect result of Lupus as I am simply incapable of keeping up with the housework and dishes, etc. So, the exterminator is coming on Saturday, which makes it impossible to get to RI in time for it to be worth it, knowing we need to be home again on Sunday in time for Youba to get back to work. Sigh.

I am so happy to hear from my friend and that she wants to hang out. Now, I am completely obsessed with figuring out the best way to get Sabou to the island park without asking my friend to travel 1.5 hours to the Bronx from her place in Brooklyn to help me navigate the baby and the stroller down the subway stairs. Or do I just grab the stroller and attempt it myself, taking the risk on the subway stairs, or just ask for help from someone else going into the subway, or just splurge on a cab ride? And I miss the days when this was not even a conversation in my mind, when I could simply say, ďYes, would love to. See you then.Ē

The same goes for the invite to CT. I also miss the days when I could reply, ďYes, would love to. See you then.Ē But, I donít drive, at least not long distances. The longest Iíve driven since this disease started is 45 minutes. Now, mind you, much like the subway, I probably can drive; Iím just too afraid to. Iím afraid that something will stop working, and I wonít be able to steer the wheel or push the pedals. Iím afraid of putting my baby at risk, as well as passengers in other cars. So, whether or not we go to CT completely depends on Youba and if he is up to driving. Thatís different in my life when so many years were spent with this utter feeling of independence. He needs to work Sunday night. So, will he be up to the drive? I donít know. Itís that I donít know that I think drives everyone crazy. There are no straight answers with me, at all. I have to wait and see where I am, where my body is, where my husband is on any given day. Sigh. Itís a new normal that just doesnít feel normal.

6/16/11 Ė Preparing for weekend Ė what to do and how to do it?

Woke up a little late, but was able to get up and get the girl up and moving on time to get to work. I need to be to work on time so that I can leave on time and get to my counselor on time. Time is always an issue in NYC, an issue that I find completely exhausting. We did it. Sabou no longer fights the trip to day care, and is walking, thank goodness.

In terms of pain, there was a little bit of something in my right leg and left knee for a little while but then they subsided. The thumb went completely back to normal. The pinky is still a little sore, as is the left shoulder; but again, nothing in comparison to before. I am completely independent, able to use both hands etc.

I did leave work on-time and still got to the counseling appointment late. The train decided to go express and I ended up having to backtrack nine blocks walking. I was so grateful that both legs were working. But, I will say, even with the pain gone, the walking and the stairs continue to be a struggle for me, and I tire very easily. By the time I got to the appointment, I was in my NYC funk. There are times I just cannot stand this city. Itís exhausting, loud, crowded, and there are so many unwritten rules that I am not privy to. I am completely dependent on subways, since driving here makes no sense, and Iím afraid to drive anyway now, so if the train decides to skip stops, I am at its mercy.

So after meeting with the counselor for the first visit last week, I show up today and state, ďOK, forget all that I told you last week, about Lupus and stuff and learning to cope well with an extremely unpredictable and physically painful chronic illness. Today I am going to tell you my REAL problem. He looked all excited, like we were getting somewhere. ďI HATE THIS CITY! Do you have an intervention for that?Ē And we both laughed. I needed to laugh. If I ever canít laugh, then you know Iím in trouble. This is an issue he has faced with many clients. He helped me brainstorm ideas and alternatives; like moving to Queens, finding a house for rent that has a driveway and a backyard. Things that Youba and I began discussing right away when I got this job; things I havenít thought a lot about since diagnosis. And it exhausts me to think about moving. And with the mice, and the small apartment, and the fact that we both now work in Queens, there are so many good reasons to move. And then thereís the physical move, which I probably wonít be able to do much to help along, and the need to locate another affordable day care, and the need to start over again meeting people and getting to know a place. Sigh. Weíve got time. We already signed a one-year lease year, so there is time.

When I came home today, I felt energized and not exhausted, even though I took a step between work and home. Is it because I took care of myself? Is it because I actually got a seat on the train? I donít know, but the energy felt good. Sabou and I did the dishes and I got Sabou in the bathtub and I had great conversations with two other friends. One of whom has offered to come to Bronx and pick us up and drive us to her house for a Fatherís Day barbecue. This is the best offer weíve gotten yet. I must say: someone actually offering to come and get us so that transportation is no longer an issue. So, if Youba cannot handle the trip to CT to see my folks, there is this lovely option for Sunday. I still need to figure out Saturday, but thereís time.

Here I will also add that as I open up to people about Lupus, they open up to me. In the past two days, I have found out that two former colleagues of mine have also been dealing with Lupus in their lives. One Ė personally, one Ė through a loved one. Itís just unbelievable to me that so many people have gone on to continue their lively lives and I feel like mine is just so different now. But itís still so new. Iíll get all this figured out, right?

6/17/11 Ė HEADACHE! Disease or Medication?

Oh my God! I woke up to incredible pain over my right eye. It just stayed and stayed all morning. I kept closing the eye, trying to work on the computer with just one eye open. I kept massaging and rubbing that part of my forehead, to no avail. It made, or something made my whole body just feel weak. I tried eating a little snack, but that didnít help. My Prednisone I donít usually take until lunch. I couldnít wait for lunch. Treated myself to great Italian food (comfort food) and my pill, and that pain was gone and the weakness and fatigue were gone by the end of the meal, and I had a completely normal afternoon. I canít wait to go back to the doctor on Monday and bring this up to him. I remember I had that aura a while ago, but that was 9 days ago (thank goodness I have this diary and can look it up). Would it take that long for an aura to turn into the migraine pain? Or is this just a side effect of Prednisone, or am I becoming dependent on Prednisone already and just need that dose? Or does my dosage need to be changed? I have no idea but these were all the thoughts that I had at work today.

A co-worker asked me if I felt bad enough to go home. Going home never occurred to me. She said, ďYou just look like youíre in so much pain.Ē I think I responded something like, ďBut this is what I can expect probably the rest of my life now. So, do I just go home?Ē And hearing myself talk like that, was an eye-opener. All of the best advice Iíve seen for coping with Lupus is that you need to stop living life as if you didnít have it. You need to start living well with it. I obviously still have a lot to learn. But what a relief and how good it felt after lunch. And the headache remains gone. I crashed again today about 9:30pm and woke up at 1:00am, which is my usual, and the right wrist is in a lot of pain. Havenít had pain there in a while. HmmmmÖ can only imagine what tomorrow will bring.

6/18/11 Ė Saturdays suck and another aura

So, I woke up today and the right wrist was just not cooperating. I couldnít move it too well, and couldnít pick things up with it. So, dreams of taking the girl to a park are dashed again. I canít carry the girl and the stroller down the subway stairs. I probably canít push the stroller too well either. And there is no Plan B. So, I am stuck, again, at home, while Youba sleeps. Iím alone with the girl, in the apartment, unable to go anywhere or do anything. And she spends yet another beautiful summer day in a living room. I am growing to hate Saturdays very much. And itís not anger at Youba. I think itís more like jealousy. He can sleep. When he wakes up, he can carry the laundry to the Laundromat; he can go for a haircut; he can go out and do errands. I canít. I havenít figured out how to get to the hairdresser since December 2010. We got back from Mali at the end of January. The girl and I were both pretty sick in February, and then Lupus symptoms began in March, which leads us to where we are Ė Lupus time. It drives me a little crazy, which then makes me lose patience quickly with the little girl who is as stir crazy as I am in this living room. Sigh. Then at the end of the day Youba remarks, ďSabou, you didnít go outside at all today.Ē Uh, duh, no, she didnít. The only way that could have happened was if he took her, right? I canít. And I want to go out so bad, just like her. Lupus just sucks. The unpredictability just sucks.

Then come the evening, I am feeling better and energetic, but now itís time for the girl to go to sleep. I so wanted to just call a friend and be like, letís meet up in Manhattan or something, and just go out, and leave Youba with the sleeping baby. What stops me? What stops me from taking that action and giving myself a little adult girl time without the baby? I have no idea. And I just stayed home.

At 9:30pm, I had another aura. So, I guess it is good that I stayed home. Sigh. So now I really need to start tracking this. It lasted the usual 15–20 minutes. At least I was home. I tried to explain it to Youba, but itís such a weird thing, and if youíve never had one Iím not sure youíd really get it. I thought about drawing it, but Iím no artist. Maybe it would help though. So, the last time I had an aura, it was 9 days before the headache hit. Wonder what Iím in for this time.

After the aura, I just went to bed, feeling a bit defeated. They make me feel like I am really sick, like something is really wrong with me, even though the eye doctor told me that they are not Lupus related. I just donít believe him. I know that sounds strange, because I am really sick, but once the pain goes away, itís like I forget, so Lupus always sends a reminder Ė Iím still hereÖ

At least tomorrow, Youba has agreed to drive us to New Haven (half-way between NY and RI) for a Fatherís Day Lunch with my parents. This will be my first time out of NYC since Motherís Day, and for my own wellbeing, I need to get out of this concrete jungle regularly. I canít wait.

So, I wake up about 2:30am and Youba is up, he canít sleep. Heís too used to the third shift, and he slept all day. So he asks me if I can drive tomorrow. I tell him, ďWeíll see.Ē Ainít that the truth. I really have no idea what will work or not work until the day arrives. But, if he canít drive, because he canít stay awake, what then of this trip to New Haven? Lupus sucks. I think I said that before.

I also asked my parents when theyíd be coming back to the Bronx. They pretty much said never. Itís too stressful. The apartment is too small. They feel trapped in the apartment. (Welcome to my world.) The mice they donít like. I told them the exterminator came and found the holes and the landlord will take care of it, and that the two they saw when they were here are now dead, the glue traps got them. Nothing helped. Bronx is a tough sell. Add Lupus and a toddler to the mix, and really, who wants to come? I donít even like being here on the weekends.

Since waking up though, I have had no pain. So, I was able to do the dishes, and clean out an area of the living room which was in great need. That felt good to be able to do. Hope thereís no ramifications tomorrow.

No idea what will happen tomorrow. But at least I have Monday to look forward to: a day at work, in air conditioning, surrounded by nice adults, and no toddlers, and then my follow-up Rheumy appointment. I canít explain it except to say that work is keeping me sane right now. If I couldnít work, didnít have that wonderful excuse to get out of the apartment, I donít know what Iíd do. I know there are natural mothers out there, people with innate maternal instincts. Unfortunately for Sabou, thatís not me. And I struggle with parenthood. And I struggle with parenthood and a chronic illness. And I struggle.

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 June 24, 2011

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