Fellow friends with “misunderstood” illnesses,
hope all of you are hanging in there today! 🙂
Warning to the grammar police: I do make typos and my grammar is lousy. It’s a symptom of my illness and cant be helped :).
If it bothers you that much, there are many other blogs you can go read. I will not be insulted, I assure you! 🙂
I’m hanging in there as best as one could with M.E…
For those whose are thinking, she must’ve made a typo, she probably meant M.S. … No, not a typo, M.E. is the right abbreviation. M.E. is abbreviation for Myalgic Encephalomyelitis.
I know, what the heck is Myalgic Encephalomyelitis…you have probably heard of the other name that is used for M.E. which is
Chronic Fatigue Syndrome…..
Yes, that “fatigue” thing, but “fatigue” was the wrong word
thrown in there by a doctor with a supposed high “IQ”
who really wasn’t using his high “IQ.”
Chronic was also the wrong word too, because we all know chronic illnesses are chronic, so “chronic” shouldn’t of been thrown in there either. If you think about it, R.A. isn’t “Chronic Stiff And Crooked Joints”, its R.A.. M.S. isn’t called “Chronic Damaged Nerves”, its M.S.. Diabetes isn’t called “Chronic high blood sugar syndrome, its called Diabetes.
So the doctor who came up with “THAT” name, (CFS), definitely wasn’t using that high “IQ” of his, that got him through Harvard Medical School. I cant tell you what the heck he was thinking, but he wasn’t using that high “IQ.”
I absolutely “HATE” saying Chronic Fatigue Syndrome.
I absolutely “HATE” “THAT” “NAME.”
I cringe when I have to say “THAT NAME.”
It takes a lot of patience having to say “THAT NAME.”
Have you ever really thought about how much patience
it takes to be a patient?
I found it took less patience being a nurse than it does a patient. Especially being a patient with a misunderstood, controversial illness.
Its 2014, and we have “controversial” and “misunderstood” illnesses! Who would think that in the year 2014, that would be the case. I thought by now we would have medication. etc..
Forget about medication, we don’t even have research funding, the patients have to raise the money to get any funding for research!
I knew there could be a day that an illness may become part of the picture later on in life that could change things, but not having to not only stop working at 30 years old, but also having something that would be considered a “controversial” and “misunderstood” illness. It boggles my mind just thinking about it, and that was 20 years ago.
It also takes patience having to tell people that your illness is called M.E. because most people will ask you what M.E. is.
When the person you are talking to you asks you what M.E. is, “THAT” other “NAME” always ends up in the conversation. When “THAT” other “NAME” is in the conversation, you know by the look on the persons face if they already have an opinion about “That” other “NAME.” As we know, it takes patience having to be nice pretending you aren’t seeing that look on the persons face!
Then, if the person isn’t familiar with your symptoms, and you have to explain one or more of the symptoms, again, that make you want to pull your hair out of your head, again, it really takes a lot of patience to do that.
When I worked as a nurse, I could explain things over and over all day because I loved what I was doing, I really loved taking care of patients and I had patience with my patients.
When life changed and life went to the other side of the stretcher, that type of patience did not exist anymore.
I would’ve never even dreamed of telling a patient their illness didn’t exist or their illness was “All In Their Head.” I was not one of those nurses and I don’t remember any of the nurses I worked with being one of those nurses, I actually never heard of one of those nurses or doctors for that matter.
I believed my patients with no question. I especially believed them, if one of them told me something like (which actually happened), “i’m an alcoholic, i’m afraid i’m going to go into D.T.’s. You better believe I believed them, and went right to the doctors and told them to prescribe the medication before that would happen because the patient had already been there 3 days, there wasn’t much time left before that could happen. I also didn’t want that patient going into D.T.’s on my time.
Unfortunately, I feel I have to apologize profusely for people who I once called my colleagues, who actually do that to people. They tell patients “its all in your head.” That’s such a lack of respect, its actually abuse, and quite frankly, those practitioners should be ashamed of themselves.
Patients feel so defeated after hearing those words “its all in your head.” Many patients will end up walking away, will not contact the medical board because they they think the medical board will not believe them either.
Talking about colleagues, doctors would be considered colleagues, and what boggles my mind is what many of these “newer” colleagues are being taught in medical school, and what they actually say to patients.
When I started this rodeo of being on the other side of the stretcher, doctors I worked with actually knew what the illness was, or heard about the illness, because the illness had been getting media attention, and there seemed to be so many patients in the New York area that were medical people. There were doctors who said to me, “oh no, you have that,” oh how terrible, i’m so sorry. A nurse that I worked with actually said, I don’t know how you do it, “I would slit my wrists.”
There was one time, about 9 years ago, I thought I was going to lose my patience with a doctor. It took much patience to sit there and remain calm. I had bronchitis and I couldn’t drive the hour and 10 minutes it takes to get to my doctor who treats me. I went to a local doctor, figuring, well, its bronchitis, I will go there, the doctor will listen to my lungs, etc.. write the prescription for the medications, and that would be it…..
I never met someone who was as rude as this doctor was. I had met rude doctors before, when I worked, but they were rude to the nurses, they were not rude to the patients. I was also caught by surprised, I was so stunned, I felt myself sitting there with my mouth opened not believing what I was actually hearing, because I never saw a doctor talk to a patient the way that doctor was talking to me.
When this doctor, “Dr. G.,” who happened to be a female doctor, walked in, was pushing a mayo stand (a small table used in the operating room), with a laptop on it, looking at the laptop screen. She pushed that mayo stand until she was a few feet away from me. She didn’t even say hello, i’m Dr. So and So, how are you today…
The first words out of her mouth were, while she was still looking at the laptop screen was:
“There is no such thing as Chronic Fatigue Syndrome”.
“Chronic Fatigue Syndrome is depression.”
“Who is your doctor?”
“Is your doctor an internist?”
“If your doctor is an internist, medicare is not going to pay me.”
“You should’ve went to my friend Dr. B. down the road at the urgent care center.”
“Who filled out your disability papers, how interesting that someone filled out disability papers.”
“You have fibromyalgia too, I make my fibromyalgia patients exercise.”
I was so stunned, I was speechless, I had never had an experience like that. I couldn’t believe it. Not only that, she didn’t even take my blood pressure, no physical exam, etc. She did listened to 2 breaths of each lung with her stethoscope, then stated, “Not Bad,” wrote a prescription for Robitussin and Codeine, and that was the extent of the appointment.
She was also younger than me, and I must confess,
I really wanted to slap her because she sounded
like a wise mouth teenager.
My own kids never even talked to me like that doctor talked to me!
I have to say, it took a lot of patience being a patient,
when I was sitting in that room.
I walked out of that office, got into my car, sat there, and didn’t really know what hit me.
4 days later, after having a 105 degree fever during the night, was coughing, was short of breath, I did go to her friend “Dr. B.” at the urgent care center down the road.
I will say, “Dr. B.” was so kind. The first thing “Dr. B.” said to me was “what meds are you taking for your fibromyalgia?” “Dr. B.” also proceeded to do a physical exam. “Dr. B.” then wrote prescriptions for the medications that “Dr. G.” should’ve written 4 days previously.
God Bless Dr. B.!!!!!!
When I decided to contact the medical board about Dr. G., Dr. G. had actually left the State of Florida and is living in another country. Her medical license was listed as “null and moot.” I thought, just as well, I probably wasn’t the only patient who experienced the “Dr. G. experience.”
It definitely takes “patience” being a “patient” today, in the year 2014, of one of the many misunderstood and controversial illnesses, because unfortunately, medical schools are teaching the students the false doctrine of “Its All In Your Head.”
Like I said, it takes “patience,” being a “patient.”
“The Other Side Of The Stretcher” (C) 2014
This blog is not for medical advice.
For medical advice, you must speak with your physician!