Aa
How to solider on
I have MS and Cancer. I spend a lot of time at the hospital. I spend every Thursday at the Cancer Hospital. Duke is a big bureaucracy. Three people are involved in making Doctor's appointments. My research nurse fill out a request, an appointment scheduler calls the hub which is at another location, an appointment setter at the hub makes the appointment. I did not know this and used to get really ticked off at all the mistakes and complication at making my appointments.
Last week I need a prescription from the pain clinic at Duke. They called me a week later to tell me they did not have my address. When they looked up my phone number my address is right there. I had to drive and hour and a half to pick up the script which they could not find because it was in the out going mail with no address. I went back a week later for an appointment. The first thing they do is verify my address. I said "Now you have it but you did not have it last week.
Duke is like a bad airlines. You pay first class prices for economy care.
Oh and I had to go for 12 mammogram shots and an ultra sound. They could not find the breast lump they saw on CT Scan. The CT report said it was in my right breast in the arm pit and they could not find anything. I found the lump yesterday it is in my left breast! They did not check under my left arm pit.
We had snow last week but I already had an appoint scheduled for this Thursday, but they cancelled it and made it for Friday, then they remade it for Thursday and now its back on Friday. They said it was because of the snow. What does the snow have to do with an appointment scheduled a week after the snow.
I just want to scream. Duke is run like the VA only I am paying a lot of money for so many stupid things.
UNC is just as bad except there everyone looks at you and says "Thats not my job" At least the staff at Duke try.
Alex
Last week I need a prescription from the pain clinic at Duke. They called me a week later to tell me they did not have my address. When they looked up my phone number my address is right there. I had to drive and hour and a half to pick up the script which they could not find because it was in the out going mail with no address. I went back a week later for an appointment. The first thing they do is verify my address. I said "Now you have it but you did not have it last week.
Duke is like a bad airlines. You pay first class prices for economy care.
Oh and I had to go for 12 mammogram shots and an ultra sound. They could not find the breast lump they saw on CT Scan. The CT report said it was in my right breast in the arm pit and they could not find anything. I found the lump yesterday it is in my left breast! They did not check under my left arm pit.
We had snow last week but I already had an appoint scheduled for this Thursday, but they cancelled it and made it for Friday, then they remade it for Thursday and now its back on Friday. They said it was because of the snow. What does the snow have to do with an appointment scheduled a week after the snow.
I just want to scream. Duke is run like the VA only I am paying a lot of money for so many stupid things.
UNC is just as bad except there everyone looks at you and says "Thats not my job" At least the staff at Duke try.
Alex
I hate that you have to deal with these issues. You would think the kinks would all be worked out and they would make things as easy as possible for cancer patients. We have gotten a taste of this with my father who has Richters Lymphoma. The chemo didnt work and is starting a drug trial at OSU for cancer. The scheduling is terrible and inconveniences they have put him through. Hes getting the run around but hopefully will actually start the pill next week. At least they say he will...but said that before. Anyway, we feel your frustrations and I applaud you for you strength and spirit!!
You amaze me,
Jeny
You amaze me,
Jeny
You would think they would consider your painting as therapy.
I think between us all we could write a book on the lack of concern for patients and the things we have to go thru.
You keep us all inspired, Alex, and send you hugs
Sarah
I think between us all we could write a book on the lack of concern for patients and the things we have to go thru.
You keep us all inspired, Alex, and send you hugs
Sarah
Joiedecour,
I will be turned down for disability. Because I can still paint they say I am not disabled which makes sense. I just need to start painting again this Spring.
Alex
I will be turned down for disability. Because I can still paint they say I am not disabled which makes sense. I just need to start painting again this Spring.
Alex
Amen to all of the above. Alex, you really are a marvel, a miracle, and a gift to us all.
We continue to pray for miracles for you and yours.
We continue to pray for miracles for you and yours.
Thank you for sharing today too. If I were a doctor, I'd love your sunshine and strength. But bureaucracy and red tape be damned. Any word on your disability status yet?
Hi Alex,
it sounds like today went better than before. With the exception of the very long day. You certainly have a full plate, yet you still are able to see good in people. I am terrible at expressing myself, but I just wanted to say that I get so much strength from how well you are handling your illnesses. You are truly an inspiration to me.
I'm sending many prayers and HUGS,
Warm regards, barb
it sounds like today went better than before. With the exception of the very long day. You certainly have a full plate, yet you still are able to see good in people. I am terrible at expressing myself, but I just wanted to say that I get so much strength from how well you are handling your illnesses. You are truly an inspiration to me.
I'm sending many prayers and HUGS,
Warm regards, barb
I spent 0ver 8 hours at the Cancer Hospital today. Everyone was overbooked. The lines were the longest I have ever seen them. The staff was great.
First off my port would not work. They spent an hour trying to make it work. Finally they took blood from my arm.
Patients needed Polly today. More than any other day people asked to pet her. These were desperate people so I let them pet Polly. It became like a party around us in the waiting rooms.
I learned so many people's stories. Cancer patients and family members. All frustrated and hurting for one reason or another. It was humbling.
The doctor visit went well and the appointment clerk was a gem. What a great guy he was.
Up in chemo it was so crowded and the nurses were so tired but it went well to. Polly smoothed over so many troubled waters.
I got my chemo and came home. My friend remarked how relaxed I was and how much I laughed.
She made a great comment. Her husband died of Multiple Myeloma but he used to say " look at the amount of people whose job it is to keep me alive".
Yes Duke is a huge bureaucracy but the truth is people do care about me and Polly. At UNC they literally did not care that I was dying. Duke has kept me alive two years longer than women with Clear Cell Ovarian Cancer live. My friend was asking me about what I can expect from my cancer. I really do not know because the medical literature has me doing much worse or dead.
Thanks for letting me vent. We all need to have a place to vent. We also need to be validated. Most of all I want people to say what you are going through is real and hard. You all know how hard being chronically ill is.
All of us know the nightmare of calling a doctor with an important concern and waiting days for an answer. The irritation of voice mail boxes and sitting by the phone for a return call that may or may never come. The nervousness of waiting for tests or a diagnosis. Trying to guess whether you should got to the ER or trying to guess which specialist to see. You all have all been there.
Alex
First off my port would not work. They spent an hour trying to make it work. Finally they took blood from my arm.
Patients needed Polly today. More than any other day people asked to pet her. These were desperate people so I let them pet Polly. It became like a party around us in the waiting rooms.
I learned so many people's stories. Cancer patients and family members. All frustrated and hurting for one reason or another. It was humbling.
The doctor visit went well and the appointment clerk was a gem. What a great guy he was.
Up in chemo it was so crowded and the nurses were so tired but it went well to. Polly smoothed over so many troubled waters.
I got my chemo and came home. My friend remarked how relaxed I was and how much I laughed.
She made a great comment. Her husband died of Multiple Myeloma but he used to say " look at the amount of people whose job it is to keep me alive".
Yes Duke is a huge bureaucracy but the truth is people do care about me and Polly. At UNC they literally did not care that I was dying. Duke has kept me alive two years longer than women with Clear Cell Ovarian Cancer live. My friend was asking me about what I can expect from my cancer. I really do not know because the medical literature has me doing much worse or dead.
Thanks for letting me vent. We all need to have a place to vent. We also need to be validated. Most of all I want people to say what you are going through is real and hard. You all know how hard being chronically ill is.
All of us know the nightmare of calling a doctor with an important concern and waiting days for an answer. The irritation of voice mail boxes and sitting by the phone for a return call that may or may never come. The nervousness of waiting for tests or a diagnosis. Trying to guess whether you should got to the ER or trying to guess which specialist to see. You all have all been there.
Alex
We love you Alex. You're an inspiration to all of us. It sounds like this place needs an organizational overhaul, big time! How ridiculous!
(((Hugs)))
Tammy
(((Hugs)))
Tammy
COMMUNITY LEADER
Alex,
The sheer number of mistakes, incompetence, and just gob smackingly dumb stuff that you have had to navigate through, is beyond words and would eventually and understandably topple anyone..............and yet you are still standing, still fighting, still laughing and loving!
It is humbling to be invited into your world and see what an incredible women you are....................please never change!
HUGS...............JJ
The sheer number of mistakes, incompetence, and just gob smackingly dumb stuff that you have had to navigate through, is beyond words and would eventually and understandably topple anyone..............and yet you are still standing, still fighting, still laughing and loving!
It is humbling to be invited into your world and see what an incredible women you are....................please never change!
HUGS...............JJ
What all they have said plus more! You just keep being the trooper, refusing to allow them to beat you down. Too bad they don't see the energy it drains .... I wish it were easier for you. hugs, L
They billed you for the social worker as well hmmm that's just plain rude.
I don't think I could have managed the way you have Alex. I think the health system is struggling across the globe & unfortunately the end result of a bad health system is poor patient care. :-(
I know you must just want to slap someone or scream profanities.....well I know I would lol. Just don't let them win & hang in there.
Take care of yourself & lots of HUGS.
Karry.
I don't think I could have managed the way you have Alex. I think the health system is struggling across the globe & unfortunately the end result of a bad health system is poor patient care. :-(
I know you must just want to slap someone or scream profanities.....well I know I would lol. Just don't let them win & hang in there.
Take care of yourself & lots of HUGS.
Karry.
Alex for what you have been through (and I know I do not know the particulars in every aspect of your life - health wise, emotionally and intellectually, I think you're doing pretty damned well and not locked up in some white padded room with a straight jacket.
Honestly, I think I would have a complete mental meltdown. I realize that wouldnt help matters...but really -- how much bu||$sh|t can a person take?
Apparently, YOU can take a lot and keep a level head about you.
I'm sorry you are experiencing this...but its all over the world....Rarely I see someone say "I have great doctors from the get go and no bad experiences whatsoever."
My thoughts and prayers are with you Alex.
Lisa
Honestly, I think I would have a complete mental meltdown. I realize that wouldnt help matters...but really -- how much bu||$sh|t can a person take?
Apparently, YOU can take a lot and keep a level head about you.
I'm sorry you are experiencing this...but its all over the world....Rarely I see someone say "I have great doctors from the get go and no bad experiences whatsoever."
My thoughts and prayers are with you Alex.
Lisa
So sorry about of this malarkey they constantly put you through!! You have ENOUGH on your plate without the stupidity of scheduling errors and an inability to locate your address after so many years of treatment there.
Your perseverance is admirable! You're my hero too!!
Hang in there,
Ren
Your perseverance is admirable! You're my hero too!!
Hang in there,
Ren
Hi you, I;m so sorry for everything you have to go through. It just seems so very unfair, and this kind of care is what is coming up, then our next generation has to get behind us and make the changes now. And let it be known that there is a big problem.
I hope you can again gain you humor, that I love about you. I know it is hard, and I'm praying for you,
Love and Hugs to you my friend
Candy
x0
I hope you can again gain you humor, that I love about you. I know it is hard, and I'm praying for you,
Love and Hugs to you my friend
Candy
x0
Alex,
Be grateful you only got billed for the social worker. At the VA if you make a scene they lock you up in the psycho ward for a week.
Dennis
Be grateful you only got billed for the social worker. At the VA if you make a scene they lock you up in the psycho ward for a week.
Dennis
My providers are just as frustrated as I am. I have gone to the patient advocate but that was a joke. I got a note saying she would be back to me in 10-30 business days.
I have done scenes that just got me a talking to by the social worker. Oh and they billed me for the social worker and I did not want to talk to her!
Alex
I have done scenes that just got me a talking to by the social worker. Oh and they billed me for the social worker and I did not want to talk to her!
Alex
Dang it, Alex! It stinks that you're having to deal with this nonsense on top of your own illnesses! Write letters. Drop notes in the suggestion boxes. Be the squeaky wheel. Nobody deserves service like this.
Keep on keeping on, Alex. You're the best!
PS: I deal with the same nonsense at Stanford.
Keep on keeping on, Alex. You're the best!
PS: I deal with the same nonsense at Stanford.
All I can say is I feel for you. But I have always gained strength from your
post & advice. I am sure if any one can, you will whip them into shape.
They need a good swift kick in the butt sometimes. Ugh!!!
post & advice. I am sure if any one can, you will whip them into shape.
They need a good swift kick in the butt sometimes. Ugh!!!
Sad, but true commentary on dealing with healthcare providers in the U.S. of A. They often act as if we do not have lives outside of our interaction with them!
Your ability to soldier on is what makes you my hero Alex :-)
Kyle
Your ability to soldier on is what makes you my hero Alex :-)
Kyle
Alex, my heart goes out to you. The last thing you need with all these things on your plate is a bunch of banana heads giving you the run around. One person making the odd mistake in the medical profession is barely excusable but the several you have had to deal with, no way.
Unfortunately there is no answer to it, but perhaps you should scream. Just make sure you do it somewhere that will someone will notice LOL.
Best wishes
Poppy
Unfortunately there is no answer to it, but perhaps you should scream. Just make sure you do it somewhere that will someone will notice LOL.
Best wishes
Poppy
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