a bit better

Jan 13, 2013

I am continuing to improve and get stronger. I have walked to the bathroom several times by myself with someone close by to catch me if I fall. I haven’t fallen since late Friday night after Annesley threw up on me and I had to get out of bed for Richard to change the sheets. I decided to use the out-of-bed opportunity to stand at the sink and brush my teeth. They needed a good scrubbing, but it was too much for me and I fell backwards to the floor. Luckily Richard dove across the room and caught me at the last moment so I didn’t whack my head on the floor.

My emotions are all over the place and unfortunately I keep snapping at people. I don’t mean to be impatient, but I guess I am and it is all coming out on the ones I love most. Poor Blythe. Poor Richard. So far, no yelling at the other three members of the family.

My temperature regulation seems to be a bit off. I am often very warm to the touch and will even start sweating, but then I will change and be quite cold. We don’t know if this is related or not, but it is rather odd. Additionally, my left kidney started hurting quite significantly this morning. Richard worked his magic on me and it is doing much better now. This whole thing is so bizarre – I just can’t wrap my brain around it.

I continue to research Ehlers Danlos and am putting all the puzzle pieces together. It seems quite likely that my hypermobility, constant dislocations and subluxations, umbilical hernias, holes in my abdominal wall, labial tearing, laugher-induced bladder incontinence, damaged uterine ligaments after the car accident, uterine prolapse after Fisher’s birth, the excessive bleeding during the lumpectomy last year, and my hip injury are all caused by faulty collagen.

I am so, so grateful for my muscle strength. I used to be very strong and am still quite a bit stronger than any of my friends, except Liz, who is Superwoman and could make a fortune playing her on TV. Muscle strength is the only thing that really helps with Ehlers Danlos, as the muscles compensate for the ligament laxity. I am certain that my background as a gymnast and athlete and the resultant muscle strength has carried me through my life with as few serious injuries as I have and much more importantly, has been the reason I have been able to carry four children to term and birth them.

I am spending this Sabbath day in bed and wishing someone could find my new books by Elder Bednar so I could fill my mind with his words. Maybe when Keziah gets home she can take care of that for me.

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  1. Ehlers could and probably did play into all of those.

    • tracy

      So, you think I am on the right path? I am thinking I have Hypermobility Type, fomerly Type III, but the umbilical hernias are linked to the dermatosparaxis type and I don’t have any of the other symptoms of that type, so I don’t know what to think. According to the test for the Hypermobility type, I have it. I score a five on that scale.

      • I would guess a lot of those would connect to it. I know hernias are more common in people with Ehlers. I think you’d have been diagnosed a long time ago with the dermatosparaxis type, because from what I’ve heard its pretty severe generally. We found that a lot of things were probably connected that aren’t generally listed. I believe pretty much anything that is affected by muscles can be affected and hernias if I’m not mistaken are caused by muscle separation. So it may not be a “typical” symptom, but might still be related if that makes sense. It’s a very complicated disease. The good thing is though that it really doesn’t cause a change in life expectancy or anything like that in most cases.

  2. Tam

    Wait… Liz is your only friend stronger than you!? ;) love you! Wish I could be there with you right now.

    • tracy

      Tam, I’m sure you and Boo and Camille are stronger than me as well. I was thinking of all the people here…sorry!

      Hop on a plane and COME!

      • Tam

        I really wish I could. Quit it! You are breaking my heart…

  3. Wow! I’m so glad you are feeling better. I will keep you in my prayers.