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I was just diagnosed with lupus (and dermatomyositis) after many years of struggling, feeling crazy, people assuming I was a hypochondriac, all of it. I was relieved to have some names to the monsters I've been dealing with ... but was also feeling very afraid and overwhelmed.
I called my primary care doctor to talk with her. I'm new to her, as my last primary care doc (who I LOVED!!!) left her practice and left medicine to tend to her family (the nerve of her! :) ) I have struggled with this new doctor a bit as we just don't seem to 'hit it off' naturally, and she seemed to gloss over whatever I was saying.
Well, in one of my weepier moments on Monday, I called the office to make an appointment to just down with her and talk about what has gone on here the last 10 days, the lists of diagnoses I've received, how I am handling everything, and maybe, just maybe, get a bit of reassurance that it's 'gonna be okay'.
I go to the office, she comes in, sits down, and says, "What's up?".
I KNOW the rheumatologist had contacted her, my therapist had contacted her, and when I called to make the appointment, I told them I wanted to see her because of all the new info and I was scared and weepy.
BUT, ok ... we'll start with, "What's up?".
I told her I was feeling overwhelmed and afraid. She actually asked, "What are you feeling SO overwhelmed about?" I told her I think the dermatomyositis scared me the most, but it was really a combination of everything. She says, "Oh, the dermatomyositis. Medications will have you feeling well in no time. You've been on the prednisone for a week now ... do you feel better?".
Oh Lord.
Then she said, "Hey, look at it this way. The worst is over. Getting the diagnosis is the worst part, so you should be feeling better.".
Again, oh Lord.
Yes, it's a relief to know ... but that doesn't make me feel any LESS sick right now. I know the future can be bright and hopeful for so many of us with this disease(s) ... but we have dark times, maybe during the intial diagnosis or during flares or whenever, when we just need to be validated that it's okay to be a little bit a'scared.
I asked her about the protein showing up in my urine. "Oh, it's nothing. Just a trace or so." But now it's started showing up in the last three urinalysis tests I had in the past year. "Well, your kidney function tests are fine, so let's not look for problems where they don't exist."
Back in the VERY beginning when I was diagnosed with SCLE, I was always told that the kidneys are to be watched very, very closely ... any change should be investigated. OK, I guess that information was wrong.
Just needed to vent guys ... as I build the medical team I want around me as we navigate these unchartered waters (for me, ast least).
I hope everyone is having a splendid day!
I called my primary care doctor to talk with her. I'm new to her, as my last primary care doc (who I LOVED!!!) left her practice and left medicine to tend to her family (the nerve of her! :) ) I have struggled with this new doctor a bit as we just don't seem to 'hit it off' naturally, and she seemed to gloss over whatever I was saying.
Well, in one of my weepier moments on Monday, I called the office to make an appointment to just down with her and talk about what has gone on here the last 10 days, the lists of diagnoses I've received, how I am handling everything, and maybe, just maybe, get a bit of reassurance that it's 'gonna be okay'.
I go to the office, she comes in, sits down, and says, "What's up?".
I KNOW the rheumatologist had contacted her, my therapist had contacted her, and when I called to make the appointment, I told them I wanted to see her because of all the new info and I was scared and weepy.
BUT, ok ... we'll start with, "What's up?".
I told her I was feeling overwhelmed and afraid. She actually asked, "What are you feeling SO overwhelmed about?" I told her I think the dermatomyositis scared me the most, but it was really a combination of everything. She says, "Oh, the dermatomyositis. Medications will have you feeling well in no time. You've been on the prednisone for a week now ... do you feel better?".
Oh Lord.
Then she said, "Hey, look at it this way. The worst is over. Getting the diagnosis is the worst part, so you should be feeling better.".
Again, oh Lord.
Yes, it's a relief to know ... but that doesn't make me feel any LESS sick right now. I know the future can be bright and hopeful for so many of us with this disease(s) ... but we have dark times, maybe during the intial diagnosis or during flares or whenever, when we just need to be validated that it's okay to be a little bit a'scared.
I asked her about the protein showing up in my urine. "Oh, it's nothing. Just a trace or so." But now it's started showing up in the last three urinalysis tests I had in the past year. "Well, your kidney function tests are fine, so let's not look for problems where they don't exist."
Back in the VERY beginning when I was diagnosed with SCLE, I was always told that the kidneys are to be watched very, very closely ... any change should be investigated. OK, I guess that information was wrong.
Just needed to vent guys ... as I build the medical team I want around me as we navigate these unchartered waters (for me, ast least).
I hope everyone is having a splendid day!
I'm not sure why they do this. But it sounds to me like the opposite of what their role as gatekeeper and guardian should be. When I was young it was different, doctors were always chiding their patients for ignoring symptoms.
Sheila