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Postby DeafEskie » Mon Apr 04, 2011 2:34 pm

Hi all, my name is LeAnn Cayer, aka DeafEskie or Le. (DeafEskie is my internet handle for many years). Brief intro---no time right now... then will repost later all the "complicated crap" that comes with this disease LOL.Yes, I have lymphedema. Initial place lower legs. Celluitgis inf five years ago--we think triggered it. I was born Deaf-Blind due to Congenital Rubella Syndrome. Was raised orally, mainstreamed in publicd schools. Did not know sign language until I was 17. Born and raised in Houston, the majority of my doctors are at the renowned Texas Medical Center. There is a whole lot more to my story.... but will go into deph later (PAT--if you need me to post on a whole new thread whole new topic et/etc, just let me know if you need to move it--I don't mind). Anyway.... I have MANY late manifestations of the CRS. Psoriasis, Psoriatic Arthritis, Fibromyalgia, Scoliosis (SEVERE), Osteoarthritis, Premature Ventricular Contractions (an arrythmia), Glaucoma, IBS, acid reflux, Chronic Fatigue issues, Lymphedema (newest dx), hypothyroidism, hypoaldestronism (sp??)--this is "hyper adrenals" causes LOW potassium--this condition existed before I was ever on duiretics), and I am probably missing a dx or two. Had to have a hysterectomy almost eight years ago. The docs have piled me up with oh so many meds :( Yes, I managed to finish college and have a BA degree.... but have yet to find a pt job whines. The past few years of my life have been the hardest ever for me---tragic events etc. Will explalin that later.

As I said the docs have me piled up on meds. Will post a list later. I am on medicaid and medicare.... I don't think I am going to be able to see a lymphedema "therapist :( I didnt even know those existed. The regimen they have me on is two water pills (we tried wihout as was told water pills do diddly for lymphedema and.... didnt work had to go bacdk on them UGH. I do not like being a walking medicine cabinet at 45---will keep thyroid, heart med, and all pain meds as well as skin ointments. the rest I could care less If I had a choice they would be pitched LOL. OOPS I am rambling. They have me on the duiretics, Yes I am starting to notice hardening in back of my thighs, farrow wraps (work way better than reg compression stockings at least for me), and... drumroll..... the beloved pump that feels so good. Does seem to help. We are watching/waiting to see if my stomach starts to enlarrge then we were told I would need to be switched out to a different more specialized pump. IF I do not use the pump or the wraps, my legs hurt so bad its unreal. Yes I get those water blisters.

Doc wants me doing pump three times a day an hour at a time????!!!!!!!!!

Shes a good doctor... her father is also a lymphedema specialist connected to the clinic that helped create the Farrow wraps. So she genuinely cares and seems to know a lot more than most doctors..... she is the assist head of the clinic, I believe. I would kill to get rid of all three duiretics. Not sure if possible to dump Spironolactone--that helps keep the adrenals in check :-P.

Will post more later.... gotta run. My hobbies include medical research, Facebook, FB games, friends, family and of course.... the dogs. American Eskimo Dogs. I am the nationwide transport coord for Heart bandits American eskimo Dog Rescue. Yup I am the famed "Eskie Railroad Lady on Animal Planet-. they still air it form time to time. :)
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DeafEskie
 
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Joined: Wed Sep 08, 2010 8:44 pm
Location: Houston, Texas

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