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.

4/26/11 Rheumatology ó Bronx Style

My sister and I went to the Rheumatologist yesterday, and had a lot of laughs. Think you’ll agree. Here are some of the gems from our appointment. :)

First impression:

Doctor is hiding behind her laptop, cannot see our faces. “So, who’s the patient?”

Christen: “The one limping.”

Doctor: “So what brings you in today?”

MK: “Well I’ve been in constant intense pain for the last six weeks, and I’d like to know what’s going on. It moves all over my body, like randomly and unpredictably. I’ve kept a chart of where the pain is each day if that’s helpful to you.”

Doctor: “No, that’s OK. I get it.”

MK: “I also have this creeping crud on my face that just showed up.”

Doctor: “Oh, that’s not your usual?”

MK: “Um, no.

Doctor: “Are you seeing a dermatologist for that?”

MK: “As I said, it just showed up, and I was referred to you. I do have a dermatologist for skin cancer screenings. I can go to him.”

Doctor: “Yes, definitely keep that appointment.”

Doctor: “I’d like to test you for TB.”

MK: “I hope you don’t mean the PPD test because I’ve been positive since 1994, and I already took the INH.

Doctor: “Oh, and where did you get THAT?”

Christen: “Prison.”

MK: “Yes, either prison or Morocco.”

Doctor puts on a very confused face.

MK: “Uh, volunteer. I volunteered in prison, I wasn’t like in prison.”

Doctor: “Oh, you just seem too happy to have been in prison.”

Doctor: “So what medications are you on?

MK: “Levoxyl, and Diclofenac. Oh, and birth control.

Doctor: “Hmmm, why are you on THAT?”

MK: “Well you know, I have one baby, and I’m kind of satisfied.”

Doctor: “YOU have a baby?”

Doctor: “OK, come over to the examining table and I’ll examine you.”

MK slowly limps over to the table.


MK: “Yes, that’s why I came here today. To find out.”

Doctor: “So, any questions?”

MK: “Well, I’d like to know the name of what I have and be given the right pill for it. But maybe you won’t know that until the bloodwork comes back?

Doctor: “Oh, I have my suspicions.”

Doctor: “OK, here’s where you need to go to get the bloodwork.”

MK: “Thanks. Can you tell me how to get there? Is it near Jacobi Hospital?”

Doctor: “I don’t know. I think I’ve driven past it a few times, but not sure.”

MK: “Like, is it on a subway route?”

Doctor: “Yeah, I wouldn’t know.”

I go back to this very warm joyful doctor in two weeks. Should know more then, but she definitely has her suspicions, just not sharing what they are yet.

It all started when I sought medical help while visiting Patricia in Milwaukee.

3/23/11 Diagnosis: Shoulder Pain

I strained my shoulders in mid-March 2011, trying to do too much, as many of us mothers do. Pushing the stroller with one hand and pulling a suitcase on wheels behind me with the other. A few days later, the pain was so intense I couldn’t sleep. Around four AM, my friend Patricia took me to ER, where they diagnosed me with Shoulder Pain and put me on 800 mg of Ibuprofin every eight hours for three weeks. They recommended seeing my PCP (primary care physician) if I’m still in pain after two weeks.

4/6/11 Progression

Two weeks later, I was still in so much pain, and now vomiting from all the Ibuprofin. My husband also noticed a rash spreading across my face. I go to the PCP. She immediately looks at me, listens to my story, and thinks that it is Lupus. She gives me the ANA blood test and Rheumatoid Arthritis test and prescribes Diclofenac for the pain, and hydrocortisone one percent for the skin rash.

4/20/11 Next Diagnosis

Two weeks later, I am back at the PCP to get the blood results. The ANA is positive (speckled, whatever that means) and the RA is negative. She immediately refers me to a Rheumatologist. It’s definitely Lupus. The rash has responded to the hydrocortisone one percent that she recommended, and had subsided, but recently was coming back. I chose not to treat it to make sure that the Rheumatologist would see it.

I started this journal about the sudden changes in my body with the recounting of that meeting. So hereís what happened after my encounter with the rheumatologist behind the laptop, who had no idea where she was sending me to get more blood tests:

4/27/11 Blood Work Ė Bronx Style

It’s impossible to get through to Quest Diagnostics and speak to a person. Only the computer, and the choices are very limited. For example, press two for address and directions. I did press two, and they only gave me the address. So, I made my appointment online, and had to figure out how to get there. One subway and one bus and a bit of a hike later, I find it. Well, they don’t take my health insurance. They lost that contract. And my strong conviction towards universal health care kicks in yet again, just because Medicaid is so much better than the garbage health insurance offered by employers that we have to pay for, and then pay co-pays for. So, then I did the next logical thing, ask where I can go.

Quest #1: Your primary lab is LapCorp.

Me: And where is that?

Quest #1: I don’t know.

Me: Do you have their phone number?

Quest #2: Here’s the address.

Me: Thanks. Do you know how to get there?

Quest #2: Well, you see, they are our competitor so we really can’t help you in how to get there.

Quest #1: We could draw your blood here, but you’d definitely be sent a bill for it.

Me: No thanks.

So, I have to call my sister, and hope that she’s on the computer at work, so she can help me get to LabCorp. She’s AWESOME, in case you didn’t know.

So, two buses, and a very long walk later I find LabCorp.

LabCorp #1: Please come to the side.

Me: Yes?

LabCorp #1: We can’t draw your blood until 3:30pm, because there is a limited window of 14 hours to get the blood to NJ for one of your tests.

Me: My doctor didn’t tell me that.

LabCorp #2: Oh no, the doctors don’t know. Laughing.

Me: Do you think that maybe the doctors should know so they can prepare their patients?

LabCorp #2: That would be a different department of LabCorp, and really how would we reach all those doctors? You need to come back at 3:30pm and I won’t be here, but he (LabCorp #1) will be here and he’ll take you even if there’s a line. See, it’s Friday, and I only work a half-day.

So, I found the nearest train #6, went to Parkchester, where I know there’s a Macy’s and a diner, and had a fabulous afternoon. LabCorp #1 did take me right away, well, the place was completely empty at 3pm, and I may have results in a few days. But that’s up to my Rheumatologist and her suspicions.

4/28/11 Despite my Misgivings

Just wanted to let you know, that whatever we think of her social skills, since seeing this doctor, and her getting me to take the prescription my PCP gave me correctly, I have been living virtually without pain for the past two days. Feeling hopeful again. Maybe I’ll drive again soon.

5/2/11 Dermatology Update

Well, like mother like daughter, and now the creeping crud has spread to my chest as well as face. Perfect start at a new job, no? I went to the dermatologist who stated that the rash definitely looks like Lupus. He asked about other symptoms, and I showed him my beautifully swollen fingers. He said that they also fit the description of Lupus Arthritis. A biopsy was taken from my chest, and he’ll have results next week. I feel much closer to diagnosis now. And I think my suspicions are correct.

Still continuing the pain medicine every 12 hours, as directed, but it is no longer keeping the pain away like it did over the weekend. Isnít this a great way to start a new job, what with all the handshakes (ouch) and need to extend arms that don’t extend (ouch)? I try to keep things subtle by not wincing during a handshake and leaning in when I send my arm out to receive the handshake, not sure if it is working.

All that aside, SO glad I took this job. I am in my element: planning meetings, presentations, discussing training curriculums, like my brain is coming back alive.

5/12/11 Diagnosis - Finally

Yes, it’s official, and yes, it’s Lupus.

So, even though the skin biopsy came up negative for Lupus, the blood work is extremely conclusive that it is Lupus. So, I’ve started on my new prescription - prednisone. No comments about any weight gain in the near future, please. I think it’s supposed to clear up the creeping crud as well. And the next phase of life begins…

5/16/11 Diagnosis - Again

Dermatology was yesterday to follow up on a biopsy from two weeks ago.

They were like, “It’s not Lupus.”

I’m like, “Look at the blood work. It’s very strongly conclusive that it’s Lupus.”

“Not on your chest. It’s pre-cancerous.

I’m like, “No, it’s Lupus.”

Well, they treated my chest with liquid nitrogen and took ANOTHER biopsy off my back, and gave me a new cream for the creeping crud on my face. If the cream doesn’t work, or if something else is found on my chest or back, then they’re moving to chemotherapy cream? Doesn’t that have a nice name?

I begged and pleaded with them to tell me where to go for integrated Lupus care, that I need my doctors to be coordinating together and so it’s not me bringing each one the lab work from the others. I want the same level of coordination that HIV folks get.

“Yeah, I hope you get another Lupus test in three weeks. It’s not Lupus.”

“But I have all the symptoms! Look at my fingers!”

Sorry guys, but I trust the blood more than the biopsy and this Botox loving dermatologist. I have his biopsy results and I’m bringing that to the Rheumatologist on Saturday when I get my enzyme results and give my urine for analysis to make sure I don’t have Lupus Nephritis. So glad I couldnít donate my kidney at this point. :)

I am calling the NYU Hospital for Joint Diseases today. This has gone beyond ridiculous.

I’m also starting to tell folks at work so they don’t wonder why at my cubicle I am using one hand to type, or that it takes me 10 minutes to open something simple, you know, like the plastic that covers a stapler. I had some good laughs at the cubicle yesterday over that. It just got so comical, I started laughing, like I am prone to do, and turned to the nice lady in the cubicle next to me and said, “Phew, this could take all day.”

She said, “Yeah, seems like something intense is going on over there.”

Oh yeah, intense, MK vs the stapler. I did finally win.

5/17/11 Canceling my first conference presentation EVER

So, I’m supposed to be speaking at this national conference next week in Atlanta, and there’s absolutely no way I can get there. I have a toddler who will not want to sit still in the plane, and I can’t be sure if my arms are going to be working or not. And reality of life’s limitations begins to set in.

5/18/11 Left Arm and Hand Stopped Working

Yesterday at work, my left knee and right hip were in so much pain that I was limping. There was also intense sharp pain in both wrists and hands and fingers. So much so that I had no movement in the left hand. The pain was so great even if something even lightly touched one of my fingers on either hand, that I was walking around the office as if my arms were in slings, and they weren’t, with the limp going on as well.

I had to ask a co-worker to open my pill bottle so I could take my Prednisone, and was unable to start the computer at my cubicle because you need to press CNTL ALT and DEL at the same time, and my left hand could not handle CNTL and ALT. It took a long time and a lot of leaning over towards the right to make it happen.

When it was time to leave, I had to ask another co-worker to help me put my coat on, because with my arm pain and constant shoulder pain, there was just no way it was getting on without help.

People have been so kind, but I’m on this job now only two weeks. I can’t imagine what they’re thinking.

5/19/11 Woke up with no pain

After yesterday’s very serious bout of intense pain, I was not expecting anything good this morning at all. But, nothing. I have had no pain all day. Is the Prednisone finally kicking in? Was I just due a good day finally? The left hand is no longer swollen and I have movement in both wrists. I was able to push the stroller today and took the toddler and myself out to dinner. She very rarely has the chance to go outside these days, and you could see the joy it brought her, and me.

I stopped by the Rheumatologist to pee in a cup and to get the results of my Enzyme blood work. I also wanted to show her the result of the skin biopsy which reads: Actinic Keratosis. I’ve been waiting for the liquid nitrogen to do something. They told me to expect scabbing that would fall off. But, so far, nothing is happening. Not sure if that is a good sign, like misdiagnosis, I mean, duh, it is Lupus not cancer. Or that it’s a bad sign because the normal thing to happen is the scabbing and falling off thing. The Rheumatologist did not comment. Just let me know that she had no blood results in yet and that she’d call me when she did. I should expect to hear about the urine analysis as well.

So, on this good day, I was really able to take care of myself, and I found an integrated care clinic: NYU Hospital for Joint Diseases. There is a Rheumatologist who specializes in Lupus and shares electronic records with other providers who are also in the NYU system. So, I’m going to let him refer me to a Dermatologist in the system, who understands Lupus.

5/20/11 Second Day Virtually Pain Free

I woke up again today with virtually no pain; just the fingers and shoulders that will probably never go away. I was able to be much more of myself, and focus on the work going on around me without being stuck in my own physical pain. I thanked the two co-workers profusely for helping me out on Wednesday, and showed off the range of motion in my left arm quite ecstatically. Not sure how much people at work even understand about Lupus, not sure how much they have to, but everyone has been very accommodating. And it does feel good to move. I never realized how many things I do with my hands in a day, and I will never, ever, take my hands for granted again: opening doors with door knobs, holding forks, typing, doing and undoing buttons, etc…It’s the simple small stuff that sometimes hurt the most.

5/21/11 Sleepy Saturday

I woke up Saturday with a bit of pain, and lots of fatigue. Seems the whole family had fatigue and we took turns napping all day. Don’t think I got out of pajamas until around 5pm.

5/22/11 Sleepy Sunday

I woke up with worse pain on Sunday, left leg, hip and left throat, and I’m not talking about a sore throat. I know that pain. This is different, this is like the pain I have in my joints, but it’s on one side of the throat. It feels very strange. Needed a three-hour nap this day, and woke up with very little pain about 4:00pm.

5/23/11 Back to Work

On Monday, the pain was centered in left knee and right wrist, luckily not that bad, so I was able to type with two hands, and just limp a little. Does this disease make one more susceptible to taking things personally? I had an experience at work where someone was not appreciating all the effort I had put into a project, and only criticized what I had not done. Her words felt literally like spears going through my heart, like my heart physically hurt, and I couldn’t breathe deeply for a little while. Is this related to Lupus, a reason why stress can bring flare-ups? Or do I just need a lesson in detachment and get-over-it therapy?

5/24/11 OUCH

Woke up this morning and the left knee and left hip are really bad. The right wrist is hanging on, but the hand is still working. There is also pain in left jaw. I am not looking forward to work today, which is too bad, because I usually love my job.

5/25/11 New Medications

OK, so yesterday, the pain moved down, where I was hoping it would never go: both hips and the left knee are basically not cooperating. I just hobbled around the cubicles all day, and took my time getting around. People keep saying, “You look like you’re in pain.” Now, thatís an understatement, for real. But, they are still so supportive. I just say, “Guess this is a bad day.”

But, at least I finally got some test results. Both my enzyme blood work and my urinanalysis were normal, so I was able to start on an anti-malarial, and I guess there is no nephritis at this time.

The Rheumy told me to fill the prescription for Hydroxychloroquine. I said, ďYou didn’t give me one.Ē And she said she’d call it in to my pharmacy.

So, after work, I hobble over to CVS, slowly. Luckily the spring semester is over and my husband can pick up the girl from day care. I arrive at the pharmacy, finally, to find out that there’s no prescription called in for me.

So, I call the Rheumy right there, from the pharmacy, and she answers, apologizes profusely, and asks to speak to the pharmacist. The pharmacist refuses to take the phone, saying that the doctor needs to call in herself. I tell the doctor. She says that the pharmacist can call her. So, I can barely stand up, and I’m playing this go-between between the doctor and the pharmacist. Needless to say, it was unbelievable. The pharmacist finally agrees to call the doctor, and I am able to get my prescription.

Now, here’s my question. Having lived in Mali, West Africa, for two years in the Peace Corps, and having volunteered in Congo and Rwanda for three summers, I am quite familiar with anti-malarial drugs. I fully understand how it will clear up the skin rash. I witnessed beautiful skin on many volunteers. I am just not sure how it will impact the level of pain.

I read through the prescription information and it stated that they just don’t know. I would like to know how they even figured it out, and what made someone think to give someone with Lupus an anti-malarial.

I will be begin attending Lupus support groups soon and am hoping that others out there have had success with pain reduction. It’s hard for me to believe that there will be improvement.

Today, it’s the left wrist again, left pinky, right thumb. I have to say though, that the legs are much better.

5/26/11 More Pain Ė More Hobbling Ė and My First Support Group

OK, so yesterday was a little bit worse than the day before, because the left wrist stopped working. So, I’m still hobbling because now the pain is in both knees and the right hip, and I’m holding the left hand up like it’s in a sling because the wrist is just too painful to move at all. The right hand is faring a bit better, is at least moveable, but not by much.

I live in NYC, and while I was obviously pregnant, people offered me seats on the subway all the time. That is not the case with the weird lady who hobbles around slowly, ungracefully, and can’t seem to move one of her arms. It’s so hard to hold on to the pole and get moved around by the motion of the train and the short stops etc. When you don’t LOOK like you are sick or disabled, it’s a completely different experience. I grab seats whenever I can. There are three trains I take between work and home.

But yesterday was a site visit. I was meeting with new people, knowing that I would barely be able to sign the sign-in sheet, nor finger through documents with them. So, I just sat with my hands in my lap, with no papers in front of me, and looked on with a co-worker. Luckily the brain is still functioning, so I can cognitively participate in the discussions, but just not move my hands. Great first impression when you meet new people, I’m sure.

Then it’s off to lunch, which is terrifying. I know I NEED to eat because I need to take the Prednisone with food. I also know that there is no way that I can navigate a fork and knife - so finger foods it will have to be. You gotta love French Fries and Sandwiches. Now, picking up the sandwich, that’s another issue, and what I had to do to contort the hand so I could, well, let’s just say, next to embarrassing, and definitely not graceful. Then I would need to push the left elbow up onto the table with my right arm so that I could comfortably get the sandwich to mouth level.

My co-worker was so nice, and so understanding. She saw me the day before when the hands were both working, and said, “I’m just so mad at your hands today.” Now, that’s a thought I never had: anger at the hands? I’ve not had anger at them, I just try to deal with them the best way I can.

Back at the office, once again, it’s hobbling amongst the cubicles, asking for help with the CNTL and ALT buttons on the computer, and typing with one hand, oh so slowly.

But, the good thing is that my husband’s spring semester is FINALLY over, and he can pick up the baby from day care for the summer. So, I was able to go my first Lupus Support Group. Unfortunately, it was a long uphill walk from the train station that I was not expecting, and I just don’t move fast, but I made it.

I met amazing women, who are dealing with this ridiculous disease as best they can, and listened to the most depressing power point about Lupus and all the symptoms, and types, and all the bad physical stuff that could happen. SIGH. Lupus is just not pretty.

I had to ask the facilitator, “When are you getting to the GOOD news?” Unfortunately, she never did. The participants chimed in that the good news is ďjust that you can learn to live one day at a time.Ē

That’s the truth though because on a daily basis, I just don’t know which body part is going to decide to stop working. Right now I am typing with both hands, not entirely pain free, but at least the left hand is moving.

Everyone in the group agreed that my doctors SUCK, and the facilitator is going to refer me to a Rheumy she knows to be good, who takes my insurance. I told her about my appointment at NYU coming up, but I’m open to see other doctors as well. No one else at the support group was working. NOT ONE woman. That freaked me a little. I don’t think any of them had disability insurance come through for them either.

My thing is that I love my job, my career. I’m willing to hobble around, and to type with one hand etc, as long as this job is willing to put up with me and my very visible pain.

Please wish me luck.

5/27/11 More Reflections on Support Group

The other piece of this support group experience I would like to share is something that the women seemed to agree upon. They believe that no one believes that they are really in pain, because some days they are fine and are walking without trouble and the next day, they canít even get out of bed. They feel judged as crazy, which I agree Lupus can do. If you are not a person who likes unpredictability, this disease is just not for you.

I have not had that experience at all. I believe that all my co-workers, friends and family deeply understand that I cannot, nor would I or anyone else, want to make this up. My hands are very visibly swollen on the days that they donít work. Itís real, people. Lupus is real. Itís important that everybody knows.

Also, someone in group mentioned that her worst days are when the pain is in the bottom of her feet and she canít walk. That thought never occurred to me before, that the pain would go to and find the bottom of my feet. And lo and behold, this morning, when I woke up, the pain was in the bottom of my feet. Iím not sure if this is simply power of suggestion, or the Lupus brain making a connection, like, ďoh Ė the feet. Thatís a great idea. Letís try that?Ē Not sure, but I was determined to walk today, and walk a lot. I took stairs instead of elevators, and chose to walk the 10 blocks to my favorite restaurant, no matter how long it would take.

5/28/11 A nice surprise ó while it lasted

Wow. Yesterday I woke up completely pain free. I felt like a new woman. Both arms, hands and wrists were working. The legs felt like their old selves. It was just this absolute joy. Everything was easier. Even though the little girl woke up late, we were definitely able to get out the door on time. When I walked down the subway stairs, easily, for the first time in a long time, I could hear the train. And I had an instinct. An instinct I have not had in a LONG time --- run! Run for the train! And I did. Luckily, my metrocard had run out so I was stopped at the turnstyle before any damage was done to either my body or my self-esteem. But damn it, I felt normal for that fleeting moment, and hopeful.

But, then, you know, Lupus happens. By mid-morning at work, the left knee was over the top painful, like incredible sharp pain and it was difficult to move around. I used my arms to move it periodically while sitting in chairs at meetings for long periods of time.

Yes, and about the arms, I have to say that the days that my arms, hands and wrists work are about the happiest days of my life. I feel like a whole person, able to speak with my hands, write, and type with both hands. Would you believe, I took notes at a meeting, like lots of notes, and then hobbled back to my desk to type them up? Success. Like the moments of normalcy that remind me of who I am and what I am capable of beyond this disease, just so encouraging.

But, by the end of day, the left knee --- excruciating; the bottom of the left foot got it’s groove on. And the pinkies --- well, you know, it can’t last forever. And so we just slowed down.

But, I will share that, after work, I took the girl for a walk, determined to keep the muscles moving. It felt so good to walk - to strut - to push that stroller - to get her out of the living room on such a nice day. I came home completely sweating and tired, but exhilarated by even the short walk that I was able to accomplish.

Friends are a joy, and today an old friend came by with dinner in hand for my whole family and then proceeded to wash all the dishes in the sink. Now, in general, this type of behavior makes me feel bad that the guest feels that she needs to do this for me. But, I just welcomed the help, and I think my husband did too, since he’s had to step up and take on the dishes when the arms, wrists and hands don’t work. It was wonderful, and she did it with joy. She wants to know what else she can do to help out. That means the world to me.

No one from my family has been to visit since this all started, and they know that I stopped driving (I just can’t trust that my arms and legs will cooperate during the course of an entire trip, and I’m afraid to put my baby at risk of accident). Nor can I lift and carry the girl and the stroller on to subways and trains, so I can’t come to them. Friends are the way to go right now for the physical support.

Then there is this change in thinking about free time. I used to try to plan, to go to a sibling’s house for a visit, or get the girl to a children’s museum, or go to see my parents etc… And here it is, Memorial Day Weekend, and besides the fact that my presentation in Atlanta was completely canceled due to Lupus, I am making sure to schedule nothing. Like nothing, in the off chance that the body is not working, or if I just need to sleep for two days, like last weekend.

We do have a family goal of getting out to the suburbs today and going to a mall, you know, for a sense of normalcy, and so the girl can walk around freely and maybe get a merry-go-round ride, but we know and understand that it will all depend on what and how my body is doing.

We had fleeting dreams of the Jersey Shore, but with the impact that the sun has on my discoid crap, I don’t know how to handle beaches yet, and probably everyone and their mother will be headed “down the shore” this weekend, so better to let it go.

As is the case every day in my life now, we’ll see.

5/28/11 Bad Day

Oh my God! I woke up today in horrible pain: right thigh, left knee, left hip, left shoulder (ouch Ė the worst pain ever), left wrist, bottom of left foot, and both thumbs (OUCH), like everywhere.

The plan today was a family trip to the mall for a bit of normalcy. Well, I could barely walk, and my husband ended up working, and it was next to impossible to care properly for my toddler alone. I broke down crying and called my brother, who is the closest to me geographically. He immediately came down to be with me until my husband got home from work. Bad Day.

This is actually the first day that I feel afraid. I am afraid of waking up to this every day for the rest of my life. Thatís a LOT of years. I am afraid that I donít have the strength to get through it, to face it every day.

The little girl is refusing to walk now and wants to be carried everywhere. When she grabs my hand to lead me where she wants to go, I literally scream out in pain, and I think it scares her, and I feel terrible and apologize right away, but I can see that this is already affecting her.

So glad I canceled the trip to Atlanta for the conference. There is no way I could have done the presentation today at all. At this moment in my life, itís hard to imagine ever getting on a plane again. Iím hoping thatís just because this day has been so hard, and that hope will return on my next good day.

I have already scheduled a friend to come over tomorrow to be with me, even though my husband will be home. I just need extra support right now, and if it is a good day, maybe she can help me get the little girl out of the living room and to a park or something.

Monday is not taken care of. Letís just hope for a good day. Iím sure most people will be outside, in the sun, at their respective barbecues.

Here’s a link to another definition of what living with lupus is like:
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Last edited by patricia obletz. Based on work by Tyler Schuster.  Page last modified on June 07, 2011

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