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Ok Here I Go........

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I know of someone who has had scleroderma for six years, she just starting seeing my doctor for her scleroderma, She was on medicine before she strted seeing this doctor. When she made an appointment to see this new doctor she spoke to someone and they told her not refill her meds yet because this new doctor might give her something else.


She this friend of mine didn't fill any of her scripts and did say anything to our scleroderma doctor and she said she left the office with nothing. Well I had asked her if she told the doctor she didn't fill her scripts yet she said no so I had told her to call the doctor and tell them she hasnt been on anything. Its like she doesn't want to do anything for her self its like she assumes that he is going to know she isn't taking any of her meds. Well I had contacted the doctor my self and mentioned that she wasn't on anything and they called her yesterday and said to come in next Wednesday no questions asked.


Well last night she said if he doesn't help her she is going to find someone else. My sclero doctor is good at what he does, but if you don't tell him anything how is he supposed to know what is going on with you? So I told her to get a second opinion with another sclero doctor so today I need to find information for the Scleroderma Center in Michigan and at the Cleveland Clinic.


I hope you don't think I'm complaining about this friend of mine but I told her last night she need to be her own advocate for herself. She said tell my sister what I need to do like she can't do it on her own. I really don't know what she expects that they have a care or what. She has no computer and she does go to support group in awhile. I think she needs more information sent to her about scleroderma. So I am going to get what I can and hope that it will help her understand . Well thanks for listening to me. I really don't expect anyone to post back on this but it bothers me that she won't take care of herself like she should.




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Hi Sam,


What friend you've been. But you can't beat yourself up over this.I have dealt with the same issues with my mother, whom has sclero also. So I make sure I go to the dr. with her and make sure she tells him everything. Would she let you go with her to her doctor? You can lead your friend to the water, but can't make her drink it. You need to just be honest with her and tell her what you told us. That the doctor can't read her mind and that if she wants them to help her then she has to be totally open with them and tell them ALL that is going on with her. You are such a wonderful friend to your pal, I hope she realizes that.


Don't spread yourself too thin.

Happy people don't have the best of everything, they just make the best of everything they have!


Warm and Happy to you! Vee

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Sam, that is really frustrating. It sounds like you really care and she is a lucky lady to have a friend like you.


I have to agree with Vee that you really can't make someone take care of themselves...even when its your health at stake. We can only offer support and encouragment.


Hang in there Sam, she will probably come around eventually.




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Vee made very good points, Sam. IF you are able to go to the doctor appointment with your friend, ask her if she would like you to go with her, just as Vee suggested. Two heads are always better than one, especially when going to appointments.


I always go with my mother, as I'm live-in caregiver, just as I go to my hubby's appointments with him (as he does mine).


As you've been told here, you are concerned about your friend, especially since you obviously know how important it is to stay on top of these diseases.


Good Luck rolleyes.gif !



Special Hugs,


Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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