County Executive Abele is working on the 2012 Milwaukee County budget including funding for mental health services and supportive housing. It is very important that the County Executive and County Supervisors hear from you about the importance of funding mental health services and supportive housing.
So, Sabou woke up this Sunday with a low grade fever of 99.6. There was no way she could go to the party. Youba informed me that heíd been up with her all night, because sheíd wake up crying every half hour. I didnít even hear her.
We were stuck home all day, and that just set me off into a bad mood spiral. Like, nothing could go right. I donít know what to do when these bad moods hit, itís like they are uncontrollable, like my hand was when it was shaking uncontrollably. And the sad thing is that when Sabou gets annoying, because sheís a toddler not because sheís really annoying, that makes it worse. I find myself losing my patience with her even quicker. Which then makes me upset, when I see what a bad parent I am being, thus adding to the bad mood. Itís terrible. I canít wait to go to the Rheumatologist tomorrow, and then therapy on Tuesday. Youba is trying to work early, but I keep reminding him that I need my Monday and Tuesday nights, for doctors and therapy. Hopefully he gets it.
Like parenting is so hard, and then this chronic illness gets in the way. Iím not blaming my bad mood on Lupus, but something has to be done. I can get so mad so quickly, and then just get stuck there. Itís awful.
I guess the Lupus link is just another wave of things I canít control. I canít control when Iíll have a good day. I canít control the fact that I canít drive long distances for fear of eye weirdness and dizziness. I canít control the fact that I canít figure out how to travel with the baby without another adult. I canít control when the symptoms will show up and which ones they will be. I just feel so completely the opposite of independent, which is not a way I usually live my life.
The spiral is somewhat equivalent to housework, which is another cause of my bad moods. I canít keep up with it, and then I judge myself for it, and then I finally clean it and then within seconds the house looks like I never did anything, because Sabou is trying so hard to help and redecorates the rooms with her toys and random other items like diapers, and as soon as the dishes are clean, new dishes fill up the sink, like nothing happened.
And I write this and all of it seems so petty, like someone needs to just shake me, tell me to grow up, get over it, and move on, which then adds to my bad mood, because somehow I just canít.
One thing I did accomplish yesterday, was finally facing my computer after bringing it in to Geek Squad and having a terrible experience there. Iíve been relying on my old computer, which sucks, and havenít had the strength to walk back into Geek Squad to get things taken care of. Yes, this is all linked to my uncontrollable bad moods.
So, I finally re-install Microsoft Office 2007 into the Ďnewí computer, the one that just died, that Geek Squad supposedly installed a brand new hard drive, and it was glorious, like working on a fast, brand new computer. It was almost joyous.
Then, I get up this morning to do this journal entry, and the screen is blank. Black. With a little cursor blinking in the upper left hand corner, and the computer isnít doing anything, and this is the one with the Ďnewí hard drive. Pissed off again? Uh, yeah.
So, I reconnect the old computer, and canít get any internet service, so I have no idea when Iíll be able to post this ridiculous entry. And since today is the doctor and tomorrow is therapy, I really canít do anything about any of this until at least Wednesday, but then Iíll really have to wait until I have the strength to face them again, without feeling like a ripped off-victim, which sets my mood spiraling.
Oh yeah, and Sabou was fine all day. No problems. She was playing and dancing and singing and telling stories all day. She has had no fever and no nose problems all day. I guess after all this, she probably could have gone to the party? Just need to NOT go there.
Yes, itís one of these days. Ever have one of these days? I wish I could say I didnít.
Inside the depths of despair, everything I noticed appeared to be in charcoal gray or black. Not even the warmth of brown existed for the 18 months that preceded my escape. It was in fall 1986 that I at last wrote a suicide note that would, I had believed, convince my family and friends to be happy for me, and spare them from even an iota of guilt after my entrance into peace through death. In that hole where life is too painful to live, different people respond in different ways.
I didnít realize that I was bent over whenever stood and, had it not been for my little white dog, Flyer, I never would have left the safety of my bed unless necessary. This was the first time I met Satan. But Satan didnít come to me right away.
The elation launched by getting that note right clued in my psychiatrist. He called my brother in Milwaukee and told Michael that I would be committed to a psychiatric hospital if I were still alone by morning. My brother Michael showed up at my place in Chicago at two am. The only time that hate for my brother, father and mother touched me was when they prevented my escape into final peace. As soon as I could, I left the living room for my bed. Thatís when I met Satan and ďHe did not have horns. He did not have a tail. He was the darkest hole, the coldest, most vile radiation of violation in the blackest, most devouring darkness ever witnessed. And always His message was a knelling of failure.Ē (Love and Madness @ www.youpublish.com)
Medication yanked me away from Satan and slowly pulled me back to a consciousness that had become afraid of death, again. Inside suicidal desire, I was worth more dead than alive, so I had believed for the nine hardest years of my life.
Once again, I realized that I am running out of the Plaquenil. So, on Monday, I went direct to the pharmacy after taking the girl to the pediatrician. She has a clean bill of health. No issues to speak of. But man can that girl scream!
At the pharmacy, I was told that they did not have Plaquenil and that I would have to come back the following day. Then they handed me back my prescription. I said, ďDonít you need that?Ē It bothered me that they were giving it back, like why, if youíre planning to fill it the next day? They said, ďWell, we canít promise that it will be here tomorrow either.Ē Now, Iím freaking out! Iím already tapering off the Prednisone, so the Plaquenil is all I have left to keep the intense pain away from my body. I ask them to find out if another pharmacy has any in stock. They check another one nearby, and same issue. I ask them to try the store in Harlem, on 125th Street. They say that they donít have the phone numbers to all the stores, and canít do that for me. Oh man, I was pissed and terrified at the same time. I canít imagine going back to all that pain. They said, ďWe seem to be going through the Plaquenil very quickly.Ē I said, ďYeah, probably because of me!Ē
So, in that moment, I remembered the experience of stopping off in the pharmacy, five minutes up the road, right over the George Washington Bridge in the suburbs of NJ. I remembered that itís open 24 hours a day, and that I was able to fill my prescription there in 10 minutes. At this point, I am extremely grateful that I have a car and can get out of this God-foresaken city/ghetto environment where I live.
After leaving the pharmacy, and eating dinner, we walk directly to the car and drive over the bridge. Sure enough, they said it would be ready in 10 minutes. Not only that, instead of the three-week supply, which is the limit that my pharmacy will give me at one time, they filled a three-month supply! I donít have to worry about this prescription for a long time now. Phew. Relief, and somehow that trip definitely seemed worth the $8 toll. Not sure Iíll still agree once they hike the toll to $12, but for today, it was worth all of it.
Thereís been weakness and some muscle pain, and times of just not feeling good and not feeling myself. Thatís how the week began on Monday. Even my boss noticed it. I said, ďYes, I guess Iím having a bad day, and since I havenít had one in so long, maybe it was just time.Ē
Yes, weirdness abounds with this disease, and I just need to take it in stride. Much easier said than done. On Tuesday, I did too much: too many staircases, too many subways, too many times trying to live as I once have. Little Siaka even noticed my difficulty on the stairs. I just told him, ďYes, Iím not very good at stairs.Ē The last thing I want to do is freak the kid out.
But, my body could not take it. Later that night, I was sitting at the computer and my right hand started to shake uncontrollably, like a tremor, like Iíve seen with Parkinsonís. It freaked me out, and I couldnít stop it. I walked over and showed it to Youba. The kids were sitting right there. I felt bad, I really donít want to freak them out, but it was so weird, and I didnít want to go through it alone. I quickly went over to sit on the couch and just held it with my other hand. So weird. And again, I just felt defeated. Defeated with each reminder that I am not completely well. Defeated by being conquered by even daily living. It bothered me tremendously and I need to just take it easy.
I woke up with very little energy this morning, and just needed to sleep. Luckily the girl made that a possibility, and I got to stay in bed until about noon. Then it was off to get her something to eat, and guess what, the Dominican Parade was in the Bronx today. All the parades finish up right outside our apartment, so the energy on the street was very exciting. We quickly got some fast food, and found a place to watch the parade. After just 20 minutes of standing there, I couldn’t take it anymore, the heat, the sun, even with my hat etc. I just couldn’t go on. So, we went back inside and watched the floats and musicians pass by our window in the air conditioning. So cute, Sabou would scream “Choo Choo” every time a float went by.
Then, fatigue hit again, and I just needed to sleep. I think I slept again until about 4pm, around the time we decided to go back to City Island, this lovely place in the Bronx with the feel of a New England fishing town. Well, the Yankee game had just ended and the parade was just finishing up, and the traffic was unbelievable. I kept asking Youba if he wanted to just go somewhere else, but no, he really loves it there, so we fought the traffic, and won I think, it really wasn’t all that bad.
The seafood place right on the water, overlooking the bay, the seagulls, and the boats was jam packed. It must have taken more than 30 minutes to finally order and receive the food. The only tables left were of course in the sun. argh. I tried, I really tried to enjoy that meal in that lovely environment, but the sun made me feel like I was in a frying pan, and I couldn’t stop feeling like I was being deep fried. I scarfed down some of my meal and grabbed Sabou and ran away from the sun into the shade. I probably looked like a freak, but I just don’t feel good under the hot sun like that. My mood changed so quickly to anger, frustration and complete irritation. Argh. I did find a table inside and asked Youba to move our stuff there. He was reluctant because there was no AC and it was hot as hell, but he complied, because he knows of my issues with the sun.
Then it was back into the traffic heading home, which also was not so bad. We probably got home about 7pm, when I realized that I had forgotten to take my medicine with us. So, I took the evening meds and we all fell asleep by 9pm. Lots of sleep today. I probably just really needed it.
Newsflash - annoying headache on the left side over the eye, and the beginnings of a toothache, also on the left side. Sigh.
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(a) To what extent are elected officials, particularly African Americans, part, parcel and contributive of the segregated conditions that are found in segregated cities?
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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.
7/31/11 Ė Another awesome day
I am amazed at how being close to family can change oneís mindset. I have had this awesome weekend, mostly because my brother and his son were staying with me, my husbandís nephew arrived from rural Louisiana to spend two weeks with us in the big city, and my other brother and his daughter took the train down to meet us all at the Bronx Zoo today. Just to see Sabou playing and laughing and kidding around with three of her cousins was awesome. Just to have the time and space to laugh and catch up with two my brothers was awesome.
Now, after the long beach day yesterday, I have to say that I woke up with a lot of fatigue and some achy-pain in my lower legs. I was really wondering how I would handle pushing the stroller all through the zoo today, but you know what, I got up despite the pain and the fatigue, and found that by showing up and getting myself up and going, that either I just forgot about the pain and the fatigue, because I got all engrossed in the present, or it actually did disappear. Now, at some point, I definitely had had enough and needed to just sit down, but donít all parents feel like that at the zoo?
My brothers were watching me closely too. They are concerned and they care. Whenever I seemed to be slowing down, or just looking tired, they checked in on me to see what I need and how they can help. It made me feel so good, and made me want to be strong. They are awesome.
I got home and was just exhausted, and luckily Sabou was too. She actually put herself to bed at 8:30, right on time, without me or Youba asking. It was adorable. I joined her at 8:30 as well, and Youba settled Siaka down to bed before leaving for work. Partnership is key.
8/7/11 Ė long time no write
Itís been a while. I am learning that having two kids in the house at very different ages makes it more difficult to find the alone time I need to write. And my parents came to stay with us for a couple of days, which was awesome, but added to the lack of time to write. So, there are days of adventures, and symptoms, and such that are now long gone.
My goal since Siaka arrived has been to show him a fabulous time here in NYC. So, Youba took him to see the Brooklyn Bridge and China Town. We spent an evening in Times Square and took him on the Ferris Wheel at Toys R Us. Saturday was Sabouís birthday bash where he had a ton of fun. And today was the Norwalk Maritime Aquarium in Connecticut. I canít do much for him during the work week because I come home exhausted and keep falling asleep before he does, so, no matter my fatigue, pain or otherwise, I am determined to get him out on the weekends.
Yes, I have been experiencing more pain, but that may be because Iím pushing myself more lately. I am driving. I am getting out of the house, pushing the stroller, walking more, etc. Today I did the drive to CT and back and the legs were like jelly when I got home, so I just chilled on the couch and passed out with Sabou when she went to bed.
The next Prednisone taper is tomorrow, along with the next bunch of blood and urine tests. Then itís back to the Rheumy next week for follow up. I havenít had an aura since that weird one a while back in my sleep, but there still are the headaches off and on. Thereís been noticeably more pain in my shoulders again, and sometimes the back. Folding clothes is the worst. But I am proud to say that I am doing my own laundry again.
I find that while I in no way completely trust my body, not sure if that will ever come back fully, but I am willing to do things that I wasnít willing to do before. I am driving myself and the kids.. And itís OK. Um, I canít think of anything else, but thatís been a big one for me.
As for my cousin, he now has a Trach so he can speak if someone presses it for him, and he has moved his toes about an inch. So, thereís been some progress, but itís a very slow go. Heís auto-immune just like me, and I remember to be grateful and make the most of every day for me and Sabou and Youba and Siaka.
Editorís 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.
It was another gorgeous weather day here in the Bronx, and I just wanted to make the most of it. So, we all decided to check out City Island, an island here in the Bronx which is more like a small New England fishing village, with water views and seafood restaurants and everything. So, off we went, Youba, Sabou and I on our little Bronx adventure. It was beautiful, the food was great, and Sabou LOVED being by the sea. I canít wait to get her to the beach this weekend in Rhode Island. Sheís so much bigger now compared to last summer, and Iím sure she is going to LOVE it.
So, today at work, something new happened. I was leaving the elevator and it felt like the whole world was moving and I had trouble walking and keeping my balance. I slowly progressed to the meeting room and literally grabbed the chair closest to the door, the first one I came to and sat down. I did not budge from that seat until the end of the meeting. Afterwards, I was completely fine. Just the weakness in the legs remained.
Then late that night, an aura showed up; my first one in almost a month. We are one week into the Prednisone taper. I see my doctor exactly a week from today. I am keeping track of all these symptoms, their frequency, etc, and will bring it to him next Monday.