Ali
  • Female
  • Plainsboro, NJ
  • United States
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Does swimming trigger a crisis?

Posted on August 18, 2009 at 2:17pm 6 Comments

Hello All,

I noticed from a young age that any time I went into a pool I got a crisis. I am not talking about showers and tub baths. I would like to hear from the rest of the community. It is very frustrating, especially now because it is summer in the northeast United States. I live in a development with a heated pool. I have gone in for five minutes, but I don't dare to stay longer than that.



I took swimming lessons last september, but I had to stop because although the pool… Continue

Keeping the Faith

Posted on June 26, 2009 at 5:00pm 2 Comments

Hello All,



I wish that we could schedule a time when we sign on and chat about whatever is on our minds. Is anyone else interested in this idea? I like reading the comments, but I would like something in real time. I realize that we are all over the world, but some nights I am up late when I can't sleep.



The title of the blog is keeping the faith, but somedays are harder than others. I know that I am blessed. I haven't had a stroke or a hip replacement. However, this… Continue

I miss working

Posted on April 21, 2009 at 6:33pm 3 Comments

I became ill at work on May 7, 2008 and was taken to the hospital by ambulance. I returned to the job on May 21 and left again on May 23. On May 29 I received a call informing me that I was fired due to attendance. I have not returned to a job since then.



I feel isolated. I am only 42 years old. I never had a "profession", but I worked steadily from the time I graduated from college. At one point, I attended grad school for three semesters. My doctor said do you want to be dead with… Continue

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At 1:47am on July 7, 2009, Alanna said…
My plan is to transition for a year before I do the Big Chop. I've been having problems doing my hair when I get a crisis, but I just end up doing what I always do, wear a hat or a scarf until I get better, lol. I try to do my hair in styles that will last me a couple of days so I don't have to worry about it. I have tendonitis in my shoulder, so sometimes it poses a problem. After 28 years, you learn to work around them...
At 11:43pm on July 2, 2009, Alanna said…
Thank you Ali. I'm transitioning from relaxed to natural and that was my first straw set.
At 8:46pm on April 22, 2009, Tiffany J. White said…
Hi ali,

Well where do I begin my first pregnanct was fairly easy. I had maybe 1 major infection and one hospilization with a crisis. During the end I had to have a unit of blood once a week to maintain adaquate blood flow to the baby. Both my boys were full term no health problems and came home with me. They both have the trait which my husband and I knew before hand. My boys are beautiful growing healthy and normal. My second pregnancy was a bit more difficult and I did have to take strong pain medication. Let me know if you have anymore questionns.
At 7:42pm on April 3, 2009, Ali said…
Hello,
I was just introduced to this site. I am always leary of the internet, but I am 41 years old with chronic pain for about 3 years now. Plus hospitalizations about twice a year. I need to converse with others that know what it is like to live with this disease as an adult. I am currently not able to work. If there is anyone out there that has suggestions for coping, I am open to listening.
 
 
 

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