She’s just trying to get out of school, he told my parents at 8 years old when my muscle symptoms started. She is faking it he wrote in my chart. I just read it. He was wrong. I had a muscle disease.
You just aren’t wiping her well enough when you change her diaper and that’s why she is getting UTIs he said. He was wrong. Had I listened to that my daughter could have died. My baby had a birth defect and needed part of her kidney removed. Fortunately for her life, I knew he was wrong and found another to save her.
There is nothing wrong with your daughter she said. I disagreed. I said she was wrong. I said she needed to keep trying. She kicked me out of the practice. I have the letter that details my unacceptable behavior “questioning the judgment of a doctor”. My daughter was later diagnosed by another who chose to listen only after ending up in the hospital.
We won’t see your daughter he said. You got kicked out of the other practice and we stick together and so I won’t treat her. He said this after we had been in the hospital all week, we had been discharged from the hospital only to see him. We’d been awake for days. He could have canceled the appointment. He had us come in anyway to tell us to our face that he wouldn’t see us. He was wrong. On so many levels he was wrong.
Why are you here he asked. There is no treatment or cure for your muscle disease so I don’t understand why you are here he said while standing in the doorway after I had waited 4 hours to see him after a 6 month waiting list. He was wrong. So many levels of wrong.
You need a specialist he said and the one I am referring you to has a horrible bedside manner but is very smart. Yep. He had a horrible bedside manner when he told me that it was all in my head that my joints were hurting and that I just seemed stressed. He was wrong. I had Lyme disease.
Just one more minute she said as she was twisting off a polyp from my cervix. NO I said, stop, it is too painful. She said almost done and kept going. I told her that she did not listen and hurt me and did not respect my wishes. She apologized and then I got a letter in the mail saying I was nolonger welcome in her practice. Her practice held 10 of the 12 gyn ecologists in our area and I could see none of them because her pride couldn’t let that happen. She was wrong on so so many levels.
Your biopsy results have come back. There actually IS something wrong with you, you have a muscle disease, she said. IS with such surprise.shocked at the fact that I truly wasn’t exaggerating my muscle pain which she claimed I had. So very very wrong.
I am reviewing my medical records for an upcoming appointment at the Mayo Clinic. The appointment is to assess my bones and bone pain. 11 years ago I saw a doctor who discovered I had severe vitamin D deficiency and it raised my parathyroid hormone which robbed my bones of calcium. He thought he had found the answer. He referred me to an endocrinologist to get me on the proper levels of D. I had, Parathyroid ultrasounds, CT scans, and a Sestambi scan to make sure I didn’t have a parathyroid tumor. I didn’t. I did have severe osteoporosis. At that time I was running and lifting weights on a daily basis. A year later I continued to decline in strength so it was decided there was something else wrong with me. A muscle disease was discovered after a long list of doctors and referrals. Throughout the next 10 years I continued to have up and down vitamin d and up and down parathyroid hormone levels. My vit d is normal now but my parathyroid is elevated. Then two months later it is fine. They don’t know why nor do they know what to do about my bones.
You only have osteoporosis because you are sedentary he said, she said, he said, she said, they said. I wasn’t sedentary 11 years ago when I was diagnosed with it. You just need more scans of your parathyroid, same scans repeated, no findings. If you were just more active it would help your bones he said. Well that may be so but 11 years ago I was running and lifting weights and it didn’t help me. There was another problem. They are all wrong. I am either shamed, blamed, or excused by these doctors.
She is a pleasant well nourished female he said. She denies nausea or pain. LOL. I’m only being pleasant because that is how this works where I kiss your fucking ass and beg you to help me. I never denied nausea or pain but no one ever fucking asked.
If anyone were to treat a person the way that some of these doctors have treated me in all of these years, they would have lost their jobs. Do you think an accountant can be an asshole and still have a job? Do you think a banker can treat you like shit and still keep his job? No. Do you think that a nurse could speak to me as if I were making it up, faking it, blame me for everything because she doesn’t fucking know and keep her job? No. But a doctor can have a reputation for a bad bedside manner and this is acceptable. A doctor can make you wait 4 hours to treat you then act as if you have inconvenienced them and that is acceptable. A doctor can label your personality on your chart but if you disagree with what they say then you are argumentative, disrespectful of the doctors knowledge, and they can just kick you out and black ball you in a small town because their fucking ego got hurt when you didn’t get down on the floor and kiss their ass to just be acknowledged.
Harsh? Fuck no. Fuck. No. I have been treated insignificantly too many times to count. Because of ego I have been misdiagnosed, ignored, insulted, looked down upon. Ego. Pedestal. Because you are a doctor. Really, you win. You’re the best. You are the highest of the high. We come to you as weak, vulnerable, helpless people and you get to ram that shit down our throat in whatever way you want because we are fucking desperate to heal ourselves or our children. We will take it until we snap and then our chart may not say pleasant female anymore.
I want a chart. I want to chart the doctors. I want my charting of them to reflect if they get paid. I want my charting of them to affect their LIFE. Like their decisions affect ours. Like their bedside manner affects ours.
We only have 10 minutes to diagnose you he said, insurance makes it that way, and he may be right. But he doesn’t have to be a dick about it when in that 10 fucking minutes he can’t figure it out. He can simply say, I don’t know. And leave me with my dignity.
You have Lyme disease she said. We are going to do everything possible to help you. And she has. For two years she has fought for me and treated me and listened to me.
You have PTSD. I know you have been treated badly by doctors before but I won’t give up on you. And she hasn’t.
Your daughter has made it out of surgery. You can see her now. She is doing just fine. And she was because he saved her.
Your daughter has made it out of surgery. You can hold her now, he said. We will need to follow up for 3 years at least to make sure her kidney is functioning well. And he did. He followed her even after he retired because he was dedicated to helping and healing her.
I have witnessed and been a part of compassion and kindness and brilliance in some of the doctors we have seen. They are right. They are doing it the right way.
I have a great team of doctors right now. One that diagnosed my Lyme disease is also the one who diagnosed my iron deficiency and sent me to the mayo clinic for an infusion. She was also the one who sent me to the mayo clinic to get the biopsy because she just didn’t know but she did know there was something. I have a doctor in England and one at the NIH that have continuously studied my muscle disease case. For them I am eternally grateful and I tell them that every chance I get.
I don’t have an answer for the doctors that have chosen to allow their ego to overshadow doing what is right. But I can simply tell you how it made me feel. You have read it. Belittled. Angry. Defeated. Fortunately I persevere. I have pushed through to find answers for my daughter and myself. Not everyone has the time, money, strength, to do that. I am once again headed back to the mayo clinic this week to further study the deterioration and pain in my bones. Here is hoping I get a doctor who is brilliant, listens, and cares. Here is hoping this chart stays as a pleasant well nourished female. Here is hoping. I am at their mercy. And they know that. All doctors know we are at their mercy. It is what they choose to do with that that seals our fate. I wish more were held accountable for this truth.