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.
7/3/11 Ė Crash
I woke up feeling pretty good and baked two batches of brownies, fried up some potato French fries, and did the dishes, all before noon. Youba was heading to bed, and I was getting that cabin fever antsy feeling and decided to do something about it. So, I packed up the stroller and the girl and headed into Manhattan to a Party City to pick up party favors for Sabouís second birthday party.
It was just me and her and we did pretty well. She got into stuff at the store, like the penny candies and such, but not too bad. Then I brought her to Fridayís for a snack before heading home. There was an elevator at Union Square, so no problems there, and at the subway station coming home, a wonderful young man carried her from the upper platform, down all the staircases to the sidewalk. He was a dream come true. See, Bronx isnít that bad after all.
But once home, wow, that was it. The right knee, the left shoulder and the stomach, lots of stomach pain. Was that because I ate at Fridayís? Because I pigged out on brownies and ice cream, just because they were there? Not sure. But I definitely crashed early.
7/4/11 Ė BBQ in the Country
The plan for some time has been to go to a BBQ in NJ with some former roommates of mine. One offered to come into the Bronx and pick us up and then drive us back home after the party, because I had explained to her that I donít drive unless thereís another adult in the car, in case I start to have problems. Well, Youba came home from work, and let me know that he would like to go to the BBQ. YAY! That made me so happy. In order to truly make it possible, Youba would need some serious sleep time in the morning and early afternoon, so, Sabou and I went out for an adventure.
This morning, somehow I also realized that I was almost out of Hydroxochloroquine and needed to get to the pharmacy. So, that became the second motivation to get us out of the house. We walked down to the park and once again, she had the whole playground to herself. She had an awesome time. They also had water misting in one area of the park, so she went over to it, asked me to take off her clothes, and she got to play in the water. A very very happy girl. Then it was off to the pharmacy and a light lunch before heading home. Luckily she fell asleep in the stroller, which is where I left her until she woke at 1:50, which was the perfect time to wake up Daddy and prepare for the trip to NJ.
So, together we drove as a family to the BBQ and Sabou had more awesome times. She played with other kids, swung on swings, slid down slides, ate a lot, and slid down the SlipíníSlide. It was just wonderful to see her playing in green grass, happy as anything, and playing with other kids. It was a Fourth of July that I think we all deserved.
So, one of the people there is a doctor. I shared with him my Lupus story. He told me about TMS Ė Tension Myositis Syndrome, stating that chronic pain is psychological and can be solved psychologically and that my doctors are only treating symptoms and not the cause. I didnít go into it any further with him because his focus is on back pain, because I have tested negative for Myositis, and because my pain (except for the left shoulder) is not chronic; it comes and goes randomly and unpredictably. But it definitely made me wonder if others with Lupus have heard this story before?
And my parents arrive tomorrow. I canít wait! It will be awesome to have them here for the next few days, and to be here for my next taper off Prednisone.
7/5/11 Ė Two problems solved today.
I am still completely joint pain free. No symptoms. The brain is working and there have been no auras. I began the taper of Prednisone today, and the pill just shattered when I tried to cut it. No idea what to do about that, except taper further than the doctor recommended.
Other than that, work was fine. New staff starts tomorrow and then Iím at 100% staffing, which is good. My parents arrived, and Youba was able to get to his dermatology appointment. His biopsy was negative, luckily. I need him healthy right now, I canít imagine what this would be like if we were both sick. And as I write that, I know how it sounds, you canít make people be healthy, you just need to be there for them when they arenít. Iím just relieved for him and all of us that the biopsy was negative.
My counseling appointment at the new office and time worked out fabulously. Itís only two subway stops from work, and on the way home. No stress. I was even early so he was able to take me earlier and I got home earlier to have more time with my parents, which was great. He also told me that pharmacies sell pill-cutters because knives donít work. I had no idea. On the way home I stopped by the local pharmacy and picked one up. It works like a charm and I can continue on the taper as the doctor requested.
And the beat goes on.
7/6/11 Ė HEADACHE
OK, so itís my second day on the taper off Prednisone. And I had a bad headache for most of the morning. Tried eating snacks, and went to lunch to eat. Why I think that helps, I donít know. But, it did taper through the afternoon. I also had extreme weakness in my legs, and lower back pain, which also tapered after lunch into the afternoon. By the time I got home from work, I was feeling much better and even went shopping with my Dad.
Now, if there are still headaches, and Iím tapering, does that mean that the medicine is keeping the headaches away, or that the medicine is causing the headaches? I canít wrap my head around what this all means right now. Weíll just have to wait and see what happens today.
So, today when I get home from work, my parents will be gone. They are leaving when Youba gets home from the dentist. Iíll miss them greatly, and Sabou will miss them even more. Our next goal is going to RI to visit them for our anniversary weekend. Keeping the fingers crossed on that one.
7/7/11 Ė STOMACH ACHE
Oh my goodness. I had intense pain in my stomach, all afternoon, so bad that it made my legs feel weak, and sometimes there was lower back pain. OUCH! It was hard to walk because it was hard to stand up straight. I dreaded the three train commute home from work and hoped for a seat on each one. Luckily this was possible.
When I got home, I knew that it was time to eat dinner and take my meds, more like take my meds, and therefore need to eat, so I forced myself to. And since eating dinner, my stomach has been fine.
I donít understand. I had lunch. I ate at work. And then there was intense pain. I eat again, and the pain completely disappears. It really makes no sense to me.
A friend has let me know that her friend who is a Lupus specialist believes that itís not the Prednisone that is causing the eye problems, but the Hydroxochloroquine. She strongly suggests not tapering the Prednisone, but instead finding out about the Hydroxochloroquine. She wants me to get a third opinion from another eye doctor and rheumatologist, and talk to a pharmacist.
The auras have stopped. Iíve had no aura since June 18th, and Iíve continued the Hydroxochloroquine. So, I really donít know what to think. At this point, I think I prefer to stay with my two doctorsí orders until the 18th and then take it from there.
7/9/11 - A beautiful Saturday in the Bronx
Today was Bronx Pride, and I volunteered to help out, so I covered myself in sun protective clothing, sunscreen and my wide rim SPF 50+ hat and headed out to the event. At the event I stood for four hours behind our table, filling goody bags, and handing out the bags to people walking by. It was a lot of fun, and I kept wondering if there will be ramifications. And, as of yet, I have no pain, no rash, just weakness in the legs that just seems to be becoming a little ongoing at this point.
When I got home that afternoon, it was just too nice of a day for Sabou to be stuck home, so I took her out. We went to Applebeeís for dinner and found a wonderful brand new park right next to the new mall with the Applebeeís. She got to run around on grass, get wet under the sprinklers, and play in sand. It was wonderful to watch her free spirit in this open safe environment. We didnít get home until well after sundown. She deserved it. I guess we both did.
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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