Jennifer J
Senior Member
- Messages
- 997
- Location
- Southern California
Hi, Everyone.
The PCP who replaced my retired doctor is very nice but she doesn't know our illness at all. (She told me she didn't know it and was going to read about it.) I saw her this past month but was too tired to print and share any of the recommendations that have been recommended to me by nice and very helpful people on this site.
Anyways, I told her I really need a social worker. I don't have enough food to eat or the ability to prepare warm food, I need help to get essentials things are falling apart (shoes are duct taped together...), help to make phones calls to try to find more help or resources, and I need better housing (asbestos crumbling from the ceilings - I had it tested, mold, next to freeway, can't easily get support into my building....). My room, which is the best location to be for me in this building, is about a block and a half (no exaggeration) to the front door. So even to have any help I need to be able to go there and back twice to let them in and out.
I just received a call from a physical therapist who said she received a referral from my doctor for her to come give me physical therapy. I can't do that. I told her so. I said I have CFS really bad and that isn't what I need. I said that I was seeing a CFS doctor who would say so. (I've only seen Dr. Chia once and that was over a year ago. He knows how sick I am.) It wouldn't have been in my best interests to say to her that from everything I've read and learned on the internet from ME/CFS specialist and forums this is not what I need or can do at this time.
What can I do? I'm so afraid how this is going to look and go in my chart. Patient is non-compliant... My survival is contingent on disability and other agencies. This will cause me more problems if it goes in my chart that I refused recommended treatment. I'm thinking my doctor when she read up on CFS has read that physical therapy is helpful. I'm not at that place and I'm doing the best that I can with what I have and where I'm at.
Awww, pout, I have too much to deal with that I can't get to. Trying to undo this is going to set me back more than I already am with everything else.
I need words, what can I say to my doctor? I'm so bad at this, and even more so when it comes to what to say to a doctor (concerns about how it is interpreted and what will end up in my medical chart which ends up affecting so many things).
I truly am so thankful for all of you on this site. I lay in bed and read the forums and don't feel so alone. I can't thank all of you enough for the contributions you make and your knowledge. I still want to and will personally thank, with more than a like, people who have responded to my previous post and the person who messaged me.
My thoughts are with you all.
The PCP who replaced my retired doctor is very nice but she doesn't know our illness at all. (She told me she didn't know it and was going to read about it.) I saw her this past month but was too tired to print and share any of the recommendations that have been recommended to me by nice and very helpful people on this site.
Anyways, I told her I really need a social worker. I don't have enough food to eat or the ability to prepare warm food, I need help to get essentials things are falling apart (shoes are duct taped together...), help to make phones calls to try to find more help or resources, and I need better housing (asbestos crumbling from the ceilings - I had it tested, mold, next to freeway, can't easily get support into my building....). My room, which is the best location to be for me in this building, is about a block and a half (no exaggeration) to the front door. So even to have any help I need to be able to go there and back twice to let them in and out.
I just received a call from a physical therapist who said she received a referral from my doctor for her to come give me physical therapy. I can't do that. I told her so. I said I have CFS really bad and that isn't what I need. I said that I was seeing a CFS doctor who would say so. (I've only seen Dr. Chia once and that was over a year ago. He knows how sick I am.) It wouldn't have been in my best interests to say to her that from everything I've read and learned on the internet from ME/CFS specialist and forums this is not what I need or can do at this time.
What can I do? I'm so afraid how this is going to look and go in my chart. Patient is non-compliant... My survival is contingent on disability and other agencies. This will cause me more problems if it goes in my chart that I refused recommended treatment. I'm thinking my doctor when she read up on CFS has read that physical therapy is helpful. I'm not at that place and I'm doing the best that I can with what I have and where I'm at.
Awww, pout, I have too much to deal with that I can't get to. Trying to undo this is going to set me back more than I already am with everything else.
I need words, what can I say to my doctor? I'm so bad at this, and even more so when it comes to what to say to a doctor (concerns about how it is interpreted and what will end up in my medical chart which ends up affecting so many things).
I truly am so thankful for all of you on this site. I lay in bed and read the forums and don't feel so alone. I can't thank all of you enough for the contributions you make and your knowledge. I still want to and will personally thank, with more than a like, people who have responded to my previous post and the person who messaged me.
My thoughts are with you all.
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