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SUNSHINEBLUE77's Photo SUNSHINEBLUE77 Posts: 119
1/30/14 10:11 P

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Thank you everyone for the responses. One of the things that I think works against me is that when I was first diagnosed, I was scared so I called with a lot of questions. Maybe I was a pain in the butt and I feel like they hold that against me. But come on I was scared and that is normal. The other thing is that the rheum department is part of a larger medical group which I work for!! I have heard some other complaints about that department.

Since I vented, I have made an appointment with another group that also works with my infusion center and I am going next week. I saw my pain management dr yesterday and she had told me that she has heard nothing but good things about this other dr. So I am cautiously optimistic :). When I started to tell her what happened with the current dr, before I got the words out she asked if my experience with the current office was a disaster. That doesn't say much for the current dr does it? So hopefully things will go well. Right now I am looking forward to ending this flare and getting my remicade on Saturday. :)

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CTHCTH1 Posts: 103
1/29/14 11:12 P

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I am really sorry you are going through this, it is beyond frustrating to be discounted. I have had that experience, too. What worked for me is to make an appointment and let the doctor know what kind of response I got from the staff person when I called and ask if that was her policy. I found out it was the staff inappropriately trying to protect her time when she would rather have talked with me. That was several years ago and I have never had that experience in her office again. If you like your doctor, I would suggest speaking to him/her directly. Having had a practice of another sort myself, I can tell you that it is impossible to always know what staff are doing in our names.
Whatever you decide, I commend you for speaking up and venting. That takes courage!
I hope it helped. emoticon

Cthcth1


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JOYISDESTINY's Photo JOYISDESTINY SparkPoints: (1,826)
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1/29/14 3:36 P

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That sounds so stressful for you and frustrating for real! I have experienced similar things as well and it is crazy making! Have you tried leaving a message for the doctor's nurse. The reason I say this is the recording becomes a document. Since RA has been known to affect lungs and heart and it is inflammation, I agree, a rheumy should care for it because they prescribe the anti-inflammatory meds. What doctors do not realize sometimes is that putting more stress on us when we have a condition where stress really affects our overall health. Maybe you could consider finding another doctor on your plan if you feel you are not heard? The web is full of customer review sites that can help you research a more client-centered doctor. Good luck. I can relate with your frustration. I hope by venting, it relieved some of the bottled-emotions.

We do not know how strong we can be until being strong is the only choice we have!


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JANISMKW's Photo JANISMKW SparkPoints: (42,555)
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1/23/14 9:46 P

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I sympathize with your troubles too. I had pleurisy years ago and I remember it hurt a lot, especially when I coughed, which was often.

It doesn't sound like you rheum and/or his secretary was responsive at all. Pretty insensitive if not rude. I have had a similar experience, though. My primary doc and rheum are in the same office (satellite of a hospital.) I was seeing him, the rheum, and had an infection and needed an antibiotic. He told me to see my primary doc for it, and I didn't know why he couldn't just give me another Rx. So I saw my doc and she didn't know either why he made me make an appt. with her and pay another co-payment. She told me he is also an internist. So I guess the rheums don't want to treat conditions outside of their specialty. It is frustrating, I agree.
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DANMAR1's Photo DANMAR1 Posts: 777
1/23/14 1:15 P

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I am so sorry you are going through this. It is frustrating! I wish our doctors could treat us as a whole person not by what part hurts... specialist medicine. Knowing what we do with autoimmune this condition can effect ALL our parts. We know the extra stress is not good for us either. I hope venting let some of that stress out for you. hugs

Margarette


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ROCKPORT9's Photo ROCKPORT9 Posts: 4,991
1/23/14 12:54 P

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I don't know if you have other choices of doctors but I would want a doctor who would see me on short notice, listen, support and explain. Sometimes it is the nurse protecting the doctor's time. If that is so, schedule a regular appointment as soon as you can on "general purposes" or RA purposes and make a list of question and statement you want to share.

Laurel
Rockport, Texas

Central time zone


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SUNSHINEBLUE77's Photo SUNSHINEBLUE77 Posts: 119
1/23/14 12:45 P

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I know I don't come around often but I needed to vent. I just don't know what to do anymore. I spent last night in urgent care with pain in my lung when breathing. Because I have had a pulmonary blood clot in the past, anytime anything like this happens I have to go thru the whole ct process and all the worry that goes along with it. The dr discharged me with pleurisy. She told me to follow up with my pcp or rheumatologist, more so rheum bc of my history. I called my rheum dr and told the nurse this...she went back to my note and said that the UCC dr said to call my pcp in the note so they can't help me. WTH?!? This is the second time since April I have had pleurisy and I am sorry but I have an autoimmune disorder that your office is supposed to be handling and helping me with!! The nurse was just rude. I just don't know what to do anymore. Pleurisy is an INFLAMMATION damn it! I am just beside myself. Shouldn't the rheum dr take note of this???

Thank you for letting me vent

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