Dercum's Disease Caregivers Online Group

I have Dercum's and my mom has Dercum's. Since I am 36 and my mom is 68, hers is more progressed and disabling. Most of you know me from the Dercum's site. I am so happy to see this forum...and as soon as my hubby gets home from work (his name is also "John"), he will be joining mdjunction and this forum!

I forgot to mention that I live 250 miles away from my mom. I live on the Georgia/Alabama state line and she lives in SC. I talk to her on the phone everyday. My dad is the caregiver when he gets off work. I am going there in a few weeks to stay for a week or so. That is how I am a part time caregiver...plus the fact that I try to research as much as possible since mom has so many secondary problems that she can't sit at the computer for a long time. I try to research and make lists of things for her to ask her doctor about and try to help her fight this bad boy monster aka Dercum's!

Post edited by: jfuller, at: 06/08/2010 03:23 PM

Hi Jennifer, What en excellent subject you choose! We are in the same situation. And my mother lives far away from me too(about 4 hours cardriving) . I search the net too and call all here doctors to try to inform them and guide them but it´s very hard.DD causes so many different things and they have all there own speciality and they have difficulties seeing the whole person and not just the part of the body they are specialised on..Her memory is very bad so I have to have contact with her doctors because she never remembers what to say or what they said. She lives alone but she has arranged for a lot of persons who help her and she pays a lot for that. I call her at least once a day, often more, to listen to her and let her know that I care and love her. You are so right Jennifer, DD is a bad,bad monster and it gets worse with the time. So we know what we can expect in the future. With this disease it´s very important to concentrate at one day at the time , I think, otherwise it will be to overwhelming. What do you think? Thank you so much for bringing this up and keep on the good work! We have to be real fighters to continue this struggle for ourselves and our loved ones. Soft hugs, Annette

Hi Annette,

I just saw this reply. Good to meet you. I didn't realize at the time I posted this how true it was, but (I think it was the day after I posted this...) my mom fell and broke 3 bones in her foot. I ended up going to her house earlier than expected and I am still here taking care of her. It is not an easy task at all...with her having Dercum's and me having it as well. She was already using a walker before the broken foot because her knees and thighs are so lumpy and painful. She is also suffering from dementia and the pain meds are not helping at all. It is so hard and scary because I see where I will be in a few years as well. I look forward to talking to you more!

But Jennifer, remember that you know more what to do to slow down the progress than your mother did. You will last longer and do better just because of increased knowledge!

Hugs,

Diane

Dear friends!!!! The last period of time has been so difficult. I do need your support now, if it´s possible. My mother has been hospitalised for the last weeks. She came there in an ambulance because she couldn´t breathe in the middle of the nigth.I live 350 kilometers away , so I couldn´t do a thing to help her. As my DD is much worse now than before I haven´t got the strenght to go there and help her. I call her at least three times a day. I call her doctors and nurses all the time to try to get them to consider DD. They just say : We don´t know anything about that and then they act as if it doesn´t excist at all.With one exception, a nice doctor, a woman , who really listens and looked it up in the net and even read what is written here in "mdjunction". The problem is that she has got absolutely no power to do anything. She has tried hard to get them to listen and maybe the result of that is yet to come.This takes all my energy(you know I haven´t got any to start with) and it stresses me tremendously.They haven´t got beds enough in this hospital so they put her in a place where they are supposed to take care of people who has got problems with theire stomacks. The responsable doctor said( because they think she has got problems with her heart) I´m a " gastro" - specialist not a heart specialist, so I don´t know so much about his . THAT CAN EXPLAIN WHY HE WANTED HER TO DO A GASTROSCOPI!!!! I don´t know if I should laugh or cry! She did arrive in the middle of the night because she couldn´t breath and a couple of days later he thinks it is an adequate treatment to offer, looking into her stomack. AAAARRRGGGHHH!!!!!Dear friends, tell me what you think of all this! What more can I do and what can I do differently? Many warm and soft hugs to all of you, Annette