Labradoodle & Goldendoodle Forum
A group for anyone who deals with or knows someone that deals with chronic, terminal, or long term disease. It is meant to be UPBEAT, to share stories of support to, as well as practical ideas of what to do with our doods when we can't care for them.
Members: 17
Latest Activity: Apr 11, 2016
Started by Jennifer and Jack. Last reply by Sue Ryzdynski Apr 11, 2016. 5 Replies 0 Favorites
I often use this to let others know how I am doing, I simply say I am out of spoons. Or I have plenty of spoons. The Spoon Theoryby Christine Miserandino…Continue
Started by Lorraine Bromley. Last reply by Susan and Sasha Nov 10, 2011. 4 Replies 0 Favorites
Well, I have told you all about a month ago I woke up with a sore right hand. That turned into a fiasco of health care trips to my local hospital and my Dr then to the surgeon and in patient…Continue
Started by Jennifer and Jack. Last reply by Jennifer and Jack Jul 3, 2011. 9 Replies 0 Favorites
I was contacted by the Boomer Easionson foundation, which is a foundation formed by Boomer, who has a son with Cystic Fibrosis... Anyway, a great inspiration named Jerry who does pod casts for the…Continue
Started by Jennifer and Jack. Last reply by Tina, Clover, Plus 5 More Apr 4, 2011. 2 Replies 0 Favorites
Since we have such a group of loving people I thought it would be good to continue to get to know each other better, I am not saying people with sickness have it rougher then other people, I just…Continue
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I also don't love movie theatre seats but love movies. My favorite spot to watch is in my Swiss Temporpedic Mattress (Swiss makes it sound so much more important) I live in my room most of the time with my flat screen mounted on the wall. Our kids friends always were brought into our room to say hello when they came over, most of them probably just thought I was a lazy mother the amount of time I spent in bed. Maybe they still do? I did ask my kids once, did you tell them I have a disorder and I'm not just lazy? They said no why would I? Like, we don't talk about parents, duh! There has been some shy kids who look a bit taken aback when I or the kids say come say hi to my mom. My husband just gets in there cause I'm there or he would only sleep in there. My little 9 year old cousin had a visitation with us a couple of weeks ago and we watched a movie and she cuddled up and said I love your bed! It is a king size so Neely fits in it as well.
I have tried the sleep number bed and I think that will be my next bed. Loved it.
I will email Adina tomorrow, I do not have the power to put a picture up, it is different I guess. Oh well we know who we are.
I really want to see Soul Surfer. I keep hearing that one line over and over, I don't need easy, I just need possible!!! I love it....
I hope you had fun tonight...
Hi Jena. I was screened for MS at one time prior to being diagnosed with EDS. MS is often one of the first diagnosis that is ruled out. I have had several people in my area go to foreign countries for CCSVT. It has been successful in the cases well publicized. I did have one patient as a client when I worked as a mobility specialist at a home health and oxygen place and know what he was like 10 or more years ago and to hear of what he is now able to do almost immidiately and in continuing scientifically measurable ways is so wonderful for him as he has lost so much to the disease in his life time.
I also have neuropathy and have had great relief in gabapentin. It has been a life saver as there is nothing worse than nerve pain. If I had of had a gun I swear I may not be here, thanks to good Canadian gun laws, lol.
I am not sure that Fibro is a real diagnosis in conjunction with EDS OR whether it is the closest set of symptoms that already has a name. It can also be so much like Chronic Fatigue syndrome as well. Are these separate disorders? Or are they related. I tend to think I have Ehlers and that Fibro is another disorder but one that allows us to be labeled that we are in fact treatable. As soon as you say you have Ehlers than the Dr's that don't have the time or the knowledge to follow you tell you that there is nothing that can be done for you as there is no cure. They would rather not treat the symptoms unless it has a name. Ehlers can't be fixed yet there is a treatment for neuropathy but one has to be willing to listen to the symptoms instead of washing their hands of you as a diagnosis.
Basically I look great on the outside!!! imo but am falling apart from the joints outward.
It is nice to see people with Ehlers have great taste in dogs!! Look forward to chatting some more.
By for now.
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