Monthly Archives: April 2014

Its Time For Meds……I Must Be Insane!



How many medication and vitamin pill bottles are in your pill bag?

When it’s time to take meds, and  I look in my bag of medication bottles,  I always think, do I actually take all of that?  Because anyone who would see all of those pill bottles would think, does she actually take all of that?  She must be crazy!

If anyone who is reading this that has an “understood” illness, you probably have no idea what im talking about.  You are thinking, what is she talking about, how many pills does she take?  I guess im not doing too bad,  I only take 2 pills a day.

If you are new to the illness club, you probably do not like the idea of  taking meds for the first time on a regular basis, especially if its 2 pills, 2 pills are 2 too many for you.  You are probably already thinking by next year this time, that you will not be taking those 2 pills a day, that you are going to kick that illness and say good-bye to those pills.

Imagine if there were no medications for your illness, what would you do?



Before I go on…..

this always makes me think about a patient who was a patient on the first floor that I worked on.  The first floor that I worked on, 1/2 of the patients were neurosurgery patients.

This particular patient was a patient of a world reknown neurosurgeon named Dr. Bronson Ray, who happened to have been a surgeon in the hospital for many years and was retired.  The patient was the first survivor of a particular surgery that was done in 1959, and Dr. Bronson was the surgeon.  Everyone was excited that one of Dr. Bronson’s patients was there. This patient was the celebrity because she had been one of Dr. Bronson’s patients.


DrBronsonRayDr. Bronson S. Ray


Well the conversation soon changed, it wasn’t about this patient being one of Dr. Bronson’s patients, it was about how she took her meds.

When it came time to give this patient her meds, she was on so many meds, by the time you finished putting them in the medication cup, there were 27 pills. The 27 pills weren’t just little pills, there were big pills in that bunch, there were capsules that were the size of one of those huge omega 3 fish oil pills. This was everytime she got her meds which was more than once a day.

After all the pills were in the cup, this patient always held out her hand, she wanted all the pills in her hand.  As soon as you would put all of those pills in her hand, she would actually toss them in her mouth, and when you would hand her the cup with the water, she would always say, just sit it right there, and she would proceed to read her newspaper.  She was able to swallow all of those pills without any water.


So, not only did she not drink any water to take her pills, she was able to toss all of those pills right down, and it didn’t even look like she was swallowing all of those pills. This patient had that down to a science. She did that everytime she got her meds.

I was still a new nurse, just there a few months, and I was absolutely fascinated. I wondered, how did she do that without choking on all of those pills.  I thought, I couldn’t even take one motrin at that time without drinking a big glass of water, and here is this patient who could take all of those pills in one shot, with no water.

The first few times I gave her meds, I was a little skeptical.  There were 3 other patients in her room, as I gave them their meds, I watched to see if she really did swallow all of those pills.

When I was in the coffee room, I asked the other nurse I worked with if she gave that patient who had been one of Dr. Bronson’s patients medications before.  The first thing my co-worker said, yes, she swallows all of those pills with no water.

Talk about a tough as nails patient!  That lady was tough as nails!  If you think about it, she would have to be tough as nails, to have a surgery at one time, that she didn’t know whether or not she was going to wake up!

Back to medication time!

Imagine being new to the illness club, and there were no medications specific for your illness, what would you do?

Well, all of us who have one of these “misunderstood” illnesses, we are sort of in those shoes.  Those of us with M.E., have no specific drugs for our illness that is approved by the FDA at all, NONE!

The doctor can prescribe (if they know what they are doing) some prescription meds for the symptoms, such as pain meds, B12 shots, potassium, magnesium, sleep medication, anti-virals, that’s about it! Those of us who are unable to work because of the illness, are unable to work because there are no specific meds that will make us symptom free and able to go back to work.

There are a few “off label” medications, which are medications that are not approved by the FDA, but you have to pay cash for them, insurance doesn’t cover those meds.  Most people do not have a $2000 + a month for off label medications. If we do, eventually we go broke trying to get well. Even the off label drugs do not make you symptom free, maybe reduce some of the symptoms, but not symptom free.

So, what do we do if we have no specific medications?

One of the things we do is, we venture off to the health food store.  Usually by that time, most of us have a network of friends with the illness or similar one, and one of the things we talk about, is which supplements are good to take. We try them hoping, the supplement will do something or even work like a medication.

Sometimes or many times we end up with a lot of vitamins such as these that you see in the picture.  

Yes, I know what you are thinking, does she actually take all of those vitamin pills??


The answer is YES!


YES, everyday at one time or another,  the thought goes through my mind, that I must be insane when I look at all of those pills and pill bottles.

Back to the patient that I just talked about, 

26 years before I met her, she went into the operating room, for a surgery that she did not know whether or not she was going to wake up.  Some people would think, I wouldn’t do that, that woman must’ve be incredibly brave or incredibly crazy.

Was she insane?


What that patient had, was the will to live. When someone has the will to live, they don’t think about things, they just do them! In her case, surgery was her only option.

Even after 20 years,  even when I feel like I am slowly dying, which is about everyday, there has never been a day where I did not think I would not be well the next day. I still believe that one day, I will be well  and that includes tomorrow.

Am I insane?

If you say yes, then you are calling most every patient with M.E. insane because we all or most of us do this!

Because we have the will to live like that patient had the will to live!

The will to live includes, never giving up hope, wanting to be well when we wake up tomorrow. The will to live makes us “do what we gotta do” whether its having surgery knowing we may never wake up or as in the case of M.E. patients, trying every supplement under the sun in that health food store,  or on that website of our favorite mail order vitamin and supplement company!



“The Other Side Of The Stretcher” (c) 2014

Fatigue is the wrong word,
Fatigue is a silly word”

~Dr. Elizabeth Dowsett~

This blog is not for medical advice.
For medical advice, you must speak with your physician!



The Patience of A Patient

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!