Tag Archives: ME/CFS

Its Time For Meds……I Must Be Insane!

 

TimeForMeds_1

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?

TimeForMeds5

 

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!

And,

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?

No!

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!

 


Do No Harm!

Welcome!

I am a nurse turned patient. It’s been 19 years since I jumped on the other side of the stretcher and became a patient, and let me tell you, this has been a long ride.

Not only did I jump onto the other side of the stretcher, but I jumped on the other side of the stretcher with one of the “misunderstood” illnesses.

I will talk about me in a later post.

But first, I have to talk about what is on my mind today.

Lately, I have been observing some of the most unethical things going on in the medical community. The psychiatric field or lobby has not only been trying to turn illnesses into a “psychiatric phenomena,” but have been quite intrusive about it.

At one time, psychiatrists were on the low end of the pay scale. Psychiatry was not a very “prestigious” field in medicine as well.
Not anymore, the “psychs” have outsmart the system and they are making a lot of money from the pharmaceutical companies doing so.

Who are the victims of this?

Patients with misunderstood illnesses, both adults and pediatric.

There are patients who can not go to an emergency room without suffering some type of abuse by the staff, or they leave in worse shape than when they went in there.

Why is that?

Because there are practitioners in those emergency rooms who will actually tell the patients, “Your illness does not exist” with no regards or respect of the practitioner who gave the patient the original diagnosis.

When I worked in the field, I never saw such disrespect and unprofessionalism. Its an absolute disgrace.

The parents of children! This is the worse! This stuns me, I cant believe what I am seeing.

There have been cases in the media these days of where children, suffering from a misunderstood illness, treated for years by a physician who specializes in the condition, with medical records to verify this, all of a sudden have to go to the emergency room.
Then, what happens when they go to the emergency room is, the parents will not only be told there is “no such thing as that illness,” that the child actually has a “psychological” problem. If the parents don’t agree, the hospital will accuse the parents of medical child abuse, call DCF, and take the child away if the parents do not agree to the “new” plan of care.

I never saw anything like this when I worked in the profession.

This is an absolute, unethical, disgrace!

Parent’s who have chronically ill children are very emotional, and rightfully so. These parents are desperate to get the child the help the child needs to get them well and if something goes wrong. This is not abuse, it would be neglect if they didn’t do this.

This has become beyond an over-kill.

True “Munchausens” and “Munchausens by proxy” are very pathological and calculating, and they don’t typically argue with the staff. They will agree with whatever medical intervention the doctors plan to do, just to get that intervention. Munchausen’s and By Proxy takes much observation to actually prove, it is not an over night diagnosis. It is actually on the rare side, not the over-kill its being portrayed as today.

A person who suffers from “Munchausen’s” are so calculating, they can actually pull off having a cancer diagnosis and get the chemotherapy. That situation actually almost happened where a friend of mine worked. Before treatment was started on that person, the hospitals in the area received an alert via fax, the doctors received the alert, approached the person, and asked the person to leave, which the person did and very quick I might add. You maybe saw one of those people in a career.

When I worked in the field, you never heard of the words “somatoform disorder,” somatic symptom disorder,” etc…

I personally, have never saw anyone ever diagnosed with somatoform disorder, the term wasn’t even used, or even hypochondriasis. Patients do not have symptoms for no reason. Doctors did their jobs and found out what was wrong with the patients!

There was none of this “medically unknown symptoms’ nonsense. If you think about it, that could be applied to anyone with any disease because the causes of most diseases are unknown.

Somatoform disorder is the biggest deceptive farce out there today!
It amazes me, that people with medical school level IQ’s, who actually complete medical school, are blinded by that. There are medical schools teaching these students not only to be lazy, incompetent practitioners, they are actually teaching them how to get sued.

The use of the term “Somatoform disorder” is a very dangerous practice.

I read about one article a week of someone dying of an undiagnosed cancer because the patient was told “it was all in their head” or that they were depressed. Someone told me not to long ago that it took her 10 years to get an M.S. diagnosis, that for 10 years, she was told it “was all in her head.”

I also take a look at the nursing forums once in a while and this is a big topic of conversation. I have seen nurses say that a patient of theirs was diagnosed with “Somatoform disorder”, then die 4 days later of a perforated bowel.

These things are an absolute outrage!

What has happened to the medical profession!

Patients should not be going through this!

Psychiatrists need to stick with psychiatric patients that need their care, there are plenty of those patients out there.

Psychiatric MD’s or other MD’s who are guilty of this intrusive and unethical practice of telling a patient with a “misunderstood” chronic illness, because they never heard of the illness or have no idea what it is, need to learn to say, “I don’t know what is wrong,” refer the patient to a doctor who does know, or to another doctor period, and not tell those patients that they are “depressed”, “crazy,” its all in your head,” or “you have a somatoform disorder.” It is abuse to do that and it harms patients!

I tell fellow patients who go through that, take advantage of those online reviews and put feedback, because by doing that, they could be saving another patient life!

I believe if practitioners were reminded to “Do No Harm,” they would start thinking twice about what they are diagnosing and how they are treating these patients!

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