Monday, July 22, 2013

Disappointment Part 2

A couple of weeks ago (about a month after the disastrous Endo appointment), it was time for my yearly physical with my PCP. It was an early morning appointment, before her nurse even arrived for the day, and I was looking forward to sitting down one on one and talking with her about my year and how I was doing. My doctor has always been almost annoyingly thorough and she schedules an hour for her physicals because that’s time she needs to cover all of her bases.

My appointment was at 8. Right on the dot, the secretary brought me into the room and told me to change into the stylish paper gown and that the doctor would be right in. At 8:20, she came in… and at 8:35 she was gone. The appointment was nothing short of a disaster. I wanted to talk to her about how stressed out and unhappy I’ve been. I wanted to ask her if she thought some medication would help me navigate through it all. I wanted to tell her how sick I’ve been feeling and ask for mono and cortisol level tests, amongst others, to see if there’s anything physiologically askew. I wanted to ask her if she thought we should repeat the EKG from last year, in case something changed in light of all of the stress I've been under. I wanted to tell her how well I've been doing with my asthma, and talk about maybe reducing the dosage of my maintenance inhalers. Every time I tried to expand upon the questions she asked me, she cut me off and seemed uninterested. In fact, the ONLY thing she said to me, at all, was “you’ve gained weight.”

I reminded her that she told me I was “dangerously thin” at my prior appointment. She talked over me stating that it must be hard to workout with school. I told her I still workout 7 days a week and she kept on talking right over me when I tried to tell her about the stress.

She was so uninterested in me and what I had to say, in fact, that she doesn’t even know I passed my boards. She doesn’t know I currently have not one but TWO RN jobs simultaneously while taking summer classes. She doesn’t know that my love and I have been together for just about two years. She doesn’t even know that in October I lost my Grammy.

After she left the room, the nurse came in and gave me a pneumonia shot that I didn’t even know I was getting. I spent 4 days sick from the side effects of that shot and I just regained full range of motion of the arm she injected me in.

I left without scheduling my physical for next year.

Later that day, I had my appointment to get my yearly thyroid ultrasound. As soon as the sonographer, who's done my scans for the last 7 years, saw me, her face dropped. Once we got into the room she told me I didn’t look good to her and while she didn’t want to pry, if I wanted to talk, she’d listen. She told me I looked too skinny to her – I told her I had gained weight back, and she said she was glad she didn’t see me when I was thinner because she would have been incredibly worried. She said it sounded like I was spreading myself too thin. She said she knows everything I’m doing right now will be worth it eventually but it’s not worth it if any of it comes at the sacrifice of my health. She was wonderful. Someone who sees me once a year for 15 minutes tops was there to listen and support me when the doctors who know me and my history better than anyone else didn’t seem to care.

It made the feelings of being deserted by my doctors even stronger. Maybe since I've been doing so well, they expected my appointments to be no big deal and expected everything to be fine. Maybe I wasn't assertive enough that things weren't (and aren't) fine. But as doctors it's their jobs to make sure that things are ok before a patient leaves the room. Maybe they were looking towards me as being the "easy" appointment of the day and just refused to see things otherwise.

Whatever it was, I haven't felt this scared and alone with my health since before diagnosis. And feeling this way at a time when I barely have the energy and motivation to take care of myself, is a huge problem that I have no idea how to fix.

26 comments:

  1. Unfortunately I don't have any words of wisdom for you other than that I hate that you have to deal with this. It's so frustrating when you're not getting the care that you need to be successful. Hopefully writing this post and knowing that you have the support of other PWD's will help to lessen your feelings of loneliness. *virtual hug*

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  2. Having doctors ignore you like that is so frustrating, and hurtful. I'm glad that your ultrasound was the same day and that you had a good experience with her.

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  3. I know I'm not a doctor, even though I play one... But anytime you need to talk, vent, cry, bitch, you have my number and I am always here to listen.

    I'm sorry your primary was so neglectful of your feelings and all you're goin through.

    Love ya hot mama.

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  4. Hang in there friend. I know finding the right Healthcare professionals can be an overwhelming challenge. If you're not getting the support you require from them, find new doctors - You're worth it and there are good ones out there!
    I've found that talking with someone can really help.
    Xoxo and sending lots of love and hugs your way!

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  5. This post touched me on more levels than you may understand.
    I feel like I'm in a similar (sinking) boat. My docs are pieces of shit (sorry but it's true). They aren't like they used to be. I don't know where it changed or where they got the idea to treat us NOT like patients but it happened somewhere.
    I can't say I have any suggestions either. I've taken a lot of it into my own hands.
    I also have a very close girlfriend who has been struggling MAJORLY with eating disorders. No, it's not me but being that she's my bestie I have a close relationship with it.
    I hope you find solace in knowing that I kind of get it.

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  6. So sorry you had another bad appointment. You are dealing with more than I could handle right now, but you really are doing great. Take care of you.

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  7. So frustrating when the very people who can support you with medical issues don't bother to listen or even observe! Know that you have the support of the diabetes online community!

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  8. Give her another chance. Call tomorrow and ask for an extended appointment.
    My hope is that she'll make the time to see you and listen to you.

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  9. Please, put out a call in the Online (or even offline) Community for recommendations for doctors in your area who give a damn. There are plenty of good ones out there, I'm sure, and you don't deserve the bad luck you've found. When you leave an appointment worried about your health and the doctor you just saw doesn't seem to care, something's not right -and the problem is NOT on your end.

    I hope things get better. I'll be cheering you on from the sidelines.

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  10. I'm so sorry you're having to deal with all of this. I'm glad the sonographer was willing and able to listen. And I'd say a switch in doctors is in order. Remember, you're never alone!

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  11. So sorry to hear this! Take care.

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  12. Oh Ashley, my heart is breaking for you. I know you're so busy and don't have time to start a search for some new doctors, but please try to find the time. You need a great healthcare team who will support you and get the best for you. I love Scott E's idea of asking the DOC for great dr recommendations in your area. And I'm sending over good thoughts!

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  13. Wow!

    I have been having similar experiences.

    In fact, I JUST posted about this very situation and how it just turned around for me today.

    Keep going, it gets better. Search high and low for someone who will give you the time you deserve!

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  14. I'm incredibly sorry you're going through this crap. You deserve so much more from your medical team. As I told you earlier, I'm here if you need to vent. Sending lots of good thoughts and love your way. Hang in there, sister.

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  15. It's disheartening at the least when doctors don't listen to our concerns. I'm glad the sonographer was sensitive to your needs, and able to listen. I've learned to never underestimate having or being a sounding board, as sometimes that's the best soul-medicine on the market. Hopefully you can find a caring PCP in your area. YOU are your number one asset and priority!! Remember that we're all here to support you! I hope this situation gets better for you!

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  16. I'm sorry you had to deal with that mess but glad you had that time with the sonographer. Just like the comments above, I'm cheering you on!

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  17. Lately I've been wondering why I even have an annual physical and am considering skipping it this year. Sorry you had such a bad time.

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  18. Lately I've been wondering why I even have an annual physical and am considering skipping it this year. Sorry you had such a bad time.

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  19. Ash - can we rally some Rhody/MA folks and hook you up with a doctor who will take care of you in the way that you need? And the way that you deserve? We love you big time, my friend, and there is a team out there who is right for you. Say the word and let's find some new docs to test drive? xoxo

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  20. I wasn't too happy with my endo appointment last week, felt like she could have been less passive and suggest things for me so I kind of know how you feel. Frustrated to say the least. I hope you're feeling better soon.

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  21. Grrr!!

    I know it seems overwhelming but one step at a time, right?

    1. See if the DOC has doc recommendations.
    2. Make an appointment.
    3. Make a list of topics (I find the doctors are less likely to escape if I have a piece of paper with an obvious list in my hand).
    4. Don't leave until you are satisfied.

    I've had 7 doctors in 10 years. I sorta get how you are feeling but I wish it didn't keep happening to us.

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  22. Ugh; that's horrible. It's so hard to be assertive when you're ambushed like that. I wonder if a well-placed, "I'm sorry, but I haven't finished speaking yet. Please let me finish" would knock any self-awareness into these people. Probably not.

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  23. I am so sorry you had to experience yet another disappointing medical professional!! I agree with others, please put out feelers to DOC and/or friends/family to find a more appropriate doctor who will hear your concerns. IMHO, nothing is more frustrating then seeing your doctor only to have them not listen to your concerns and needs and seek to assist you in getting better. HUGS

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  24. All medical professionals, from doctors to nurses to EMTs to even those just manning reception should be required to be a patient so they know what we go through when we see them and need their help and support.

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  25. Sending you lots of love & support, Ash.

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