Tuesday, April 23, 2013

Why Mention Pelvic Floor Prolapse?

I would like to address why I mentioned the PFP or bladder prolapse in my last post. Before I ever got pregnant, I went to a specialist in Ehlers Danlos. I have both Mitral and Tricuspid Valve prolapse, with very visible veins through my skin. My father died from heart related issues in his mid 40's which he was plagued with since childhood. Many Chiarians are aware that EDS and Chiari can co-exist. I was concerned about the vascular form due to my history. The expert basically told me that without genetic testing, he could only speculate. His opinion was that I most likely do not have EDS, or if I do it is very mild, and to continue on with my life plans. My point... bladder prolapse could be a result of EDS (weakened connective tissue). Of course women have this issue who do not have EDS. I did just have my third child! But, given this forum, I thought it pertinent to mention. As with every single symptom we deal with on a daily basis, it is a guess as to the origin: I feel nauseous today. Is it Chiari or did I eat something bad, or perhaps I have the beginnings of a migraine, maybe its an ulcer...

Wednesday, April 17, 2013

A moment to reflect...

Finally, a moment of peace! I thought I would catch this puppy up and apologize to anyone that did not receive a response from me. I have been in a baby fog. My son was born on Nov. 21, 2012 (day before Thanksgiving) in a very dramatic and harrowing ordeal. We are both fine now (sort of). Anyway, he ended up being a very colicky baby. My husband works 12 hour days with an additional 2 hour commute. Having just moved right before falling preggo, I have no family or friends to help. I was alone. The first 3-4 months sucked!! I am not exactly a spring chicken anymore! Finally, my pediatrician put him on Zantac and told me to stop all dairy as I am breastfeeding. It has been a total game changer! I have a whole new son :)) So I have spent the last 3 weeks catching up on sleep (as we all know, chiarians need more sleep than the average bear) and am ready to take this blog on again. I still have an enormous amount of responsibility outside of this so please be patient and make sure that you read the whole blog, as most questions are answered within. I just wanted to send my love out to all those searching for answers. This is a hard road and if my blog can help at least start the conversation about alternatives to the caveman hatchet surgery still barbarically performed on many unnecessarily, then I am a very happy woman! My Chiari after baby... Spring is here in Indiana; always a bitch. I have headaches at least 3 times a week. I cannot take my Axert, which always seemed to help, due to nursing Z (my son). I am relying heavily on Tylenol and, at its worst, 800mg Ibuprofen. So far it has worked alright. The only other real crapper is that I had pelvic floor prolapse of my bladder. That is so awful! I cannot even believe I am admitting this on a public forum. It is embarrassing and almost shameful. Definitely something women do not talk about. But, as a chiarian, I know you all are quite use to embarrassing topics in regards to our bodies. Besides, I want to take some of the shame out of prolapses. My doc put me on estrogen cream and it has done wonders. I guess breastfeeding sends you into a false menopause causing low estrogen. She said that most likely I will make a really nice recovery once I stop. Good to know. Well, have to run. I hope the fact that I have been off living my life is a source of inspiration for anyone out there wondering if they will ever be normal again. The key to chronic pain is positive thinking. Definitely not easy but, if you can master your mind, you can live past the pain :) Much love, Lori
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