Beyond the Absurd: Life with Lupus
by Mary Kay Diakite, LMSW
Editor’s Note: Introducing Mary Kay Diakite, a dear friend since 1992. Mary Kay has graciously agreed to contribute her blog on her new life with lupus, which, ironically, kicked in big time on a visit to Milwaukee to see me and present at a Peace Corps conference in Madison the last weekend in March. Lupus is an autoimmune disease that none of us knows about until it affects us or people we care about. As Mary Kay does with all phases of her amazing life, rich in cultural, geographical and human diversity, she treats her latest challenge with humor, research and intelligent determination. Last year, Mary Kay also contributed to PeaceOfMind an article on reconciliation with the people of Iraq.
7/17/11 Ė Bye Bye Beach and Back to the Bronx
We took an early morning walk to a nearby park overlooking the bay and both the Newport and Jamestown bridges, which is just gorgeous, with my father and Sabou got to run around in the big open green space. You never saw a happier girl. She canít do that in the concrete jungle of the Bronx, and I just feel itís so important to give her these opportunities.
Today we did a family brunch at the restaurant where we all dined the morning after the wedding one year ago. We sat inside because I didnít see any point in chancing more sunlight today. Sabou ate a little of everyoneís food and her favorite thing seemed to be the lobster in my dadís omelet. Sheís definitely got some Rhode Island in her.
Then back at the house, we filled up a little plastic pool in the backyard, filled it with beach balls and other inflatable fun things, and she just had a blast. My parents and Youba watched her, while I packed up for the next train ride, and it was awesome that she had more playtime with them and in the sun where mommy cannot spend a lot of time.
This train ride, she did not sleep. It was exhausting. And again, I reiterate, there is probably no way I can do this trip without another adult present. One train ride and two subway cars later, we arrive at home and finally the girl just crashes. Thank goodness.
No ramifications from the sun yet, but there is color on my chest and neck that I donít really like. Weíll see if the rash comes back.
7/18/11 Ė Rheumatology
The long awaited Rheumy appointment, we finally made it! My bloodwork, the complement studies (C3 and C4) still show active disease. The 24-hour urine test shows some protein in the urine that we are now watching closely.
We went over my symptoms both cognitive and eye-related. I told him about the two auras last week, and the two bouts of dizziness. He is quite sure that it is not the Prednisone. So, I asked about the Plaquenil. He stated that since the first aura occurred after I started the Prednisone and before I started the Plaquenil, he really does not think that it is medication related, and we are continuing the taper and watching symptoms. He also mentioned that I may be a good candidate for other medications: Mexotrexate or Benlysta. This surprised me because at one of the last visits he said I was too healthy for those, actually, his words were, ďYouíre not that sick.Ē
So, here are the next steps: 7mg for one week; 6mg for two weeks; begin 5mg, get bloodwork and urinalysis done once Iím down to 5mg and come back and see him in one month.
I left a little disappointed. Disappointed in what, I donít know. In myself? In him? In the choice of medication? That I have to think about all of these things all the time? I donít know. I went off to the pharmacy for more new pills and had good conversations with my parents, sister and friend while I waited.
Tomorrow is support group. It couldnít come at a better time.
7/19/11 Ė Support Group
After a successful day at work, I headed off to support group. Still so thankful that Youba is able and willing to pick up Sabou so I can go to these groups. One thing to add is that I saw his Fall schedule the other day, and he has placed his classes on Wed and Thurs, which is perfect. Iíll still be able to see my Doctor on Mon and go to therapy and groups on Tues. As Iíve said before, my knight in shining armor.
Today at group we discussed each personís unique experience with Lupus. So in my case we spoke about the cognitive issues, the auras, the headaches, the dizziness and the tapering off Prednisone. There were several comments that came out of the discussion:
- Get tested for Antiphospholipid Syndrome
- Donít rule out sinus problems
- It could just be migraines
- Donít think the worst
Nobody believed that it was the Prednisone, but they understood the need to taper off in order to see. Some agreed with my friend who is concerned that itís the Paquenil and not the Prednisone.
I have presentations all day tomorrow at work, and all I can do is hope that I have full cognition and no auras and no headaches.
The topic of integrated health care was in full swing when I arrived late to the group. People were sharing their frustrations with doctors who donít know the signs of Lupus, donít think to look for it, and just donít seem informed. I asked how we can work to educate medical providers of all persuasions, since we donít just see PCPs and Rheumys. The support group facilitator told us about a website called ďThe Lupus InitiativeĒ which is dedicated to educating medical providers about Lupus. Iím so glad to know that such an initiative exists, and am now interested in finding out how to get involved.
One woman shared that she has developed her own personal health journal that she brings with her to every ER appointment and every time she meets with a new doctor. This got me thinking about my other idea which is to adapt the health journal that is being developed at my place of work for HIV patients for the needs of Lupus patients. I think our symptoms are so diverse and hard to pinpoint and I think that we alone are the experts in our Lupus experience, so it is up to us to be able to inform our doctors, who do not have the same level of understanding that we do. The health journal would create a space where all the information can be kept neatly, clearly, and in an organized fashion. Just waiting to see the finished product and to see what of it would make sense for Loopies.
Then I reconnected with one of the mothers of a young child who I had met at the last meeting. We had a good conversation at the end of the meeting, exchanged phone numbers again, this time directly into our cell phones, and we plan to try to talk soon and plan a fun event for our kids. Maybe we can check out the Childrenís Museum of Manhattan, you know, somewhere inside, out of the sun, and inside air conditioning. You know, lupus friendly.
7/20/11 Ė All Day Presentation and then CRASH
So today I was on my feet pretty much all day presenting and facilitating discussions, and trying to answer difficult questions. So, the brain had to be on its feet all day too. There were times when I really had no idea what the answers were. Luckily we had a place to keep track of the unanswered questions, and the discussions can continue over time. Thank goodness, because there were definitely moments of ďI have no idea and the brain wasnít responding.Ē So important to work in teams at times like this, and my team is awesome.
But when I got home, like WOW, that was it. I could barely move. I took meds and ate as quickly as possible because of this intense pain in my stomach and that seemed to help. Itís becoming a daily occurrence that after work, towards early evening, there is this lower back pain, then GI issues, and then the intense stomach pain. The evening meds and food seem to take care of it. Not sure what that is about, and I know I havenít mentioned it before.
So, I put the air conditioner on in the babyís room, and Sabou and I just hung out there, on the big bed. I was pretty much lying down, unable to move much and she was climbing all over me. The fatigue continued until we both just passed out.
7/20/11 cont.Ė Another Aura
So, late last night while I was writing the blog for yesterday, I had yet another aura. Now thatís three in the course of about 2 weeks. Did I overdo it at work? Is standing and presenting and being on all day just too much? I hope not because I am facilitating yet another training at work, but this one is only two hours.
7/21/11 - Weak and Shaky
I was not 100% today. People at work noticed and remarked, ďAre you OK? You look so tired.Ē Now, Iím not nearly as bad as I was when the symptoms first started, but I am no actress either, obviously. It was like this weakness all through my body, and my hands were shaky, and I could feel my heart beating more than usual. I just took it easy at work, and sat down as much as possible. Tried eating, that seems to be my answer to everything, but really, the food did not taste good, and I only ate a half of my sandwich. As the afternoon went on, I did improve. The stairs were noticeably an issue today. I get slower and slower as I climb and Iím breathing hard at the top. Not saying Iím gonna stop using them, but it is getting more difficult.
After work, I could still feel the weakness, mostly in my legs, but I was determined to get to Harlem and pick up toddler clothing for my girl from a friend moving cross country. I drove myself, no baby, no husband, just me. It felt good and normal to be in my car alone again. That hasnít happened, probably since Sabou was born. I was fine, found my way around, with no problems. At my friendís house, we chatted, shared stories of parenting with chronic illnesses, etc and wished each other well. I made sure to only take what I was able to carry to the car and nothing more. It was a little hard to walk and carry the big box, but I made it. I knew that there was absolutely no way for me to walk that big box up the four-block hill to my home from the parking lot, so I just left the items in the car until Youba can help me with them. They are all sizes much bigger than Sabou, so there is no rush. And I felt proud of myself for setting realistic limits and for not trying to do too much and for driving by myself without another adult present. Thatís the first time since the symptoms showed up.
Once home, it was time for meds and dinner and crashing. We all crashed as a family by about 9pm.
One thing Iíd also like to share is about a presentation I attended today, which gave the history of ACT-UP in the 1980s, the group that chained themselves to buildings until they got politiciansí ear regarding the AIDS epidemic: the number of people suffering and dying, the unbelievable high cost of medications, the unresponsive health care workers, the doctors and dentists who refused to treat people with HIV/AIDS, etc, etc, etc.
I couldnít help but think of us Loopies. Now, weíre not comparable with HIV. You canít have sex with a Loopie and end up with Lupus. You canít get it from doing drugs. We are not a public health risk. We donít necessarily die of Lupus, but just are sentenced to very difficult lives while weíre here. We donít have Magic Johnson, Ryan White, or Rock Hudson to give a name to an illness not understood. But, we do have Toni Braxton, we do have Seal, and probably many others I do not know.
All I want to say about this is that the AIDS activists in the 80s and 90s used very direct civil disobedience and mass unrest models and got their voices heard. The Ryan White Act is still in effect, and the only reason I have a job now, and that PLWHA have integrated care, access to housing and social services and free prescriptions. HIV meds can cost upwards of $2,000 a month. In comparison, Benlysta is costing $35,000 a year, many insurance companies are not covering it, and there are no other options for Loopies who canít afford it.
So many of the issues, including the stigma, I think are similar to Lupus. Now, the stigma is not the same. Of course, doctors are willing to treat us, they just donít always believe us. They think that we are making it up. They just donít always have a grasp on the illness and throw us aspirin. They just donít get it.
And so I asked a lot of questions to this presenter, to see what could be adapted from the ACT UP model that was so effective back in the day, to better the lives of us Loopies.
Here is his response, in a nutshell:
- It all started in support groups
- We were fed up and angry
- We were tired of watching our friends and family suffer and die
- We couldnít be silent anymore. ďSilence Equals DeathĒ
He said to continue to go to support groups, to listen to each other, the frustrations, the needless suffering etc, and start with something like a letter writing campaign. Start with something you can do easily and that doesnít take a lot of energy. Take small steps. Then go home and be with your family and rest, knowing youíve done something, and then take it from there.
It left me with much to think about, as I went through the rest of my day as best I could.
7/22/11 Ė Itís HOT
New York is sweltering, like 103 degrees, feeling like 115. Thank goodness I get to be in air conditioning at work all day. Thank goodness also it was a slow day. I had no symptoms to speak of today, just the weakness in the legs that doesnít go away. I feel productive at work and still really enjoy this job.
Didnít do anything after work but lay around in the air conditioned apartment with my husband and daughter. Didnít have an appetite either, too hot to eat much else than ice cream, but made myself eat something so I could take the evening meds. All in all a very non-Lupus kind of day.
7/23/11 Ė Big Step Forward
So, today I woke up feeling really good and did laundry for the first time since diagnosis. Weíve been paying for the drop-off service these past few months, which is not cheap. But, today I just felt strong enough to do the folding myself. It was fine, but I definitely felt some back pain towards the end of the folding experience. Came home and was inspired then to take on the dishes. Days have gone by and this really needed to be done.
Still feeling good, and craving strong air conditioning, I decided it was time to try driving the baby on my own and see how I do. So, Sabou and I drove to my brothersí in Beacon, NY, about an hour and a half away. And I was fine. Sabou puked when we were almost to their house, but I was fine.
On the way home I noticed some pain in the left arm and hand, and right foot, and a bit in the back, but now that I am home, that all seems to be gone. The eyes and brain were fine, and I made sure to take the roads I know and not try any new ways to get there. I was so proud of myself for taking this step in the direction of independence.
It was awesome to watch Sabou play with her cousins. Sheís finally big enough to be able to, and I think they all loved it too. I know she did. It was awesome to see my brothers, whom I have not seen much of at all since diagnosis. I offered to have them plan play dates with Sabou down in the Bronx. Hopefully some of them will jump at the offer. Other than that, Iíll see them again at Sabouís Birthday Bash.
One brother is already planning on coming next weekend! YAY! And with Siaka, Youbaís nephew coming in next Sunday, weíve decided to take all of the kids to the Bronx Zoo. I am really looking forward to that.
An awesome day. Hereís hoping tomorrow is just as good.
Here’s a link to another definition of what living with lupus is like: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
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