GP Meltdown
I just got back from my GP and basically had a breakdown and walked out sobbing. I was hoping to message some friends about this later, if anyone feels strong enough. It wasn't so much that I couldn't get something important, but I've gone through too much to hear more disbelief and questioning about cfs. I needed a letter from the Dr to submit to insurance re:a wheelchair I just purchased, to help with costs. It is not so much the money (I know I am lucky there ) it was the comments made. She referred me to the O.T. A while back and through all the appts was able to get me a powered wheelchair, which has been a huge relief, mostly to go from my apt to my car (long distance, 4 bldg complex). When the wheelchair was finalized I felt very emotional, after all the years of struggle and worsening POTS etc.., to finally get a little help. I worked through the anger and grief and have been happy to just enjoy it now.
The GP said she wants to talk to the O.T. And feels it will decondition me further. She asked me if I have tried physiotherapy. I cannot answer these questions any more, I feel like I will throw up and die.
I felt suicidal and left the office sobbing holding rails as I stumbled with my purse and folding stool. A friend was with me. I never want to see her again. I felt sorry that I got happily married 10 yrs ago, because if it wasn't for him, maybe I could end this pain and check out.
I want to talk to people that understand this insult and pain. I tried to explain how I felt, all the info I gave her a year ago, she knows I've had it 25 years. I told her I was very active and pushed hard all the time.
Maybe I will feel better tomorrow, but I am questioning my own sanity as i can no longer take the stress of simple appts. Will explain later, my friend found this place, is a teaching hospital, Dr.s in last year of training. I will be getting a new resident next month and this GP graduates.
I have finally stopped crying, but now have to worry about worse relapse due to stress! Thankyou DS friends.
The GP said she wants to talk to the O.T. And feels it will decondition me further. She asked me if I have tried physiotherapy. I cannot answer these questions any more, I feel like I will throw up and die.
I felt suicidal and left the office sobbing holding rails as I stumbled with my purse and folding stool. A friend was with me. I never want to see her again. I felt sorry that I got happily married 10 yrs ago, because if it wasn't for him, maybe I could end this pain and check out.
I want to talk to people that understand this insult and pain. I tried to explain how I felt, all the info I gave her a year ago, she knows I've had it 25 years. I told her I was very active and pushed hard all the time.
Maybe I will feel better tomorrow, but I am questioning my own sanity as i can no longer take the stress of simple appts. Will explain later, my friend found this place, is a teaching hospital, Dr.s in last year of training. I will be getting a new resident next month and this GP graduates.
I have finally stopped crying, but now have to worry about worse relapse due to stress! Thankyou DS friends.
Replies
Oh wow, Pouty! I am SO incredibly sorry that someone else (cuz we\'re all used to this abuse) has cast doubt on your illness. I know what it\'s like to just be so incredibly fed up with the medical profession. How could they say it would decondition you worse. What a stupid thing to say. If you need equipment like wheel chairs and walkers and such, it\'s because we have an illness that deconditions us. We NEED the equipment or we\'ll be stuck in the house 24/7. THEN we\'ll be deconditioned. This is awful!!
I see hope here in two things. Number one....you have an option for another doctor, and pretty quickly. That may solve the whole thing right there! Number two...you realize that tomorrow is another day, and you may rest tonight and wake up with a new perspective. Not that everything wasn\'t a mess today, but that you can handle this. You have a good support system here and obviously a good husband at home and we will try to keep your spirits up and you reach out to another doctor who \"gets it\"!!
I so realize the pain and agony of re-explaining to medical people that we are suffering. I do. God bless you!! xoxo
I am so angry right now, I so hate Drs who just don\'t get it, don\'t keep up with their education & learn what is really going on out here in the world. I am sorry you had to go through this. My first thought was drop that Dr like a hot potato & then I read you will get someone else soon. I have felt like you do today on occasion & have even taken a leave of absents from Drs for about 6 months due to these idiots but as you can see I am really mad for you. I loved Darla\'s post to you, she said everything I want to say, so ditto her post. You will meet even more of these Drs in the future & they will just make you tougher, I know it hurts but you do have a good perspective that tomorrow will bring a new view of things.
You are strong, pouty, you have had to be. You have a great husband & many blessings. Hang in there, you are such a good person. Don\'t let your friend get you down either, many of my friends don\'t understand but I don\'t understand their viewpoint either so we are even. I can still have them as friends. If you have to,go on a hunt for a CFS Dr, call Dr\'s offices & see if they take CFS patients, then go to the one that does. We have to advocate for ourselves because there are some very uneducated Drs out there. Love & pray for you my friend, feel free to vent to me as often as you need & I will do the same because you are strong. Soft & gentle hugs, Denise
Thankyou for your support, it means alot.
All so familiar, all too bloody unfair, all so emotionally painful.So sorry my dear friend . We\'re all with you, always strength in numbers.Warm heart hugs to beautiful you . Don\'t let it bring you down they just don\'t get it, but we do and we gotcha girlfriend xoxoxo
Pouty, I do understand the constant explaining we have to do to be REALLY heard. Yes, this is real, it is THAT painful, I thought you understood because I explained it the best I could...these are bits of conversations I\'ve had with those in the medical field. One thing I\'ve done is to actually let my body get the rest it needs (wresting with difficult people IS hard work).
I\'m having trouble with this new therapist. I don\'t really think she has researched my illnesses to understand what I can and cannot handle. I end up feeling sad and frustrated. So I do know how you feel. I have a doc who wanted me to participate in water aerobics last year, but I just didn\'t have the energy to get dressed and participate in a class on a regular basis. I never know what\'s going to rear its ugly head....body aches, migraines, hip pain, etc.
I may have to search for another therapist....she just doesn\'t understand that I can\'t do what she wants me to do. I was so hoping that she was the right one, but we all have to protect ourselves from those who don\'t \"get it.\" I know there is someone out there who will.
Please get as much rest as you can and find some things that make you feel good...music tends to lift me up. Sometimes a phone call from a person who cares about me helps. I believe it is easier to find solutions once you\'ve had a break, if it is possible. I hope this helps. Take care, my friend.
xo
Lulu
Thankyou for this support! I have actually been quite down from this happening and feeling worse physically, so it really helps!
Pouty, I have cried so much after doctor appointments, I\'ve lost count. And this is with a nurse practitioner who treats CFS. We who deal with these medical professionals understand how much it hurts when they don\'t understand. I am glad I cried those tears of frustration. It\'s also helped me to come here to DS, where I don\'t get \"beat up\" for being sensitive.
Continue to let it out...and I pray that God will send some people who are good listeners with empathy. I\'m glad I made the choice to avoid the negative, non-believing, frustrating people when I am feeling really low.
xo
Lulu
Correction: Trying to learn how to not engage in conversations with negative people...the ones who have criticized me in the past. I don\'t always succeed, but asking God to strengthen me. I have made mistakes, and after hanging up I have regrets. Work in progress.
Pouty, how have you been doing? Just checking in. You have been so kind and understanding to me, and I want to support you in any way I can.
xo
Lulu