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January 2016

Finding a Diagnosis – A Seriously ill Nurse

By | Uncategorized | 10 Comments

This guest post is by Sarah Mott, RN, Owner nurseborn.com.  I would like to thank her for sharing her story with us.  It is an intensely personal journey through a mysterious illness.

 

Finding a Diagnosis

 

February 14, 2009 started off as any other day, It was my weekend to work. I worked on a heavy, surgical floor, but even so, I loved my job because my co-workers were awesome, the kind of coworkers that would never let another coworker sink – We were in it together.  I liked my weekend, we were always having potluck parties on the floor and it was Valentine’s Day, the perfect excuse for everyone to bring in food.

  By the middle of the shift, the back of my head and neck started to hurt and as my day went on the pain got worse and worse.  By the end of my shift, my pain was 10/10 and I could barely hold my head up. At the time, I did not know this would be my last shift working as a bedside nurse.

   I am not sure why I didn’t go to the emergency room, the pain was so bad, I felt like  someone was hitting me in the back of my head with a baseball bat.  I was stoic and waited until Monday to see the first of the 20 or so physicians that I would see over the next six and a half years. Unknowingly, I was about to embark on a journey of misdiagnosis, excruciating pain, depression, and self discovery.  sick-person-with-thermometo1

              Looking back, brings tears to my eyes, seriously, maybe it is some sort of PTSD.  I am not sure how I survived the pain. I have lost a lot of faith in the medical community, which is a difficult position to be in when you are a nurse. I so badly want you to understand my story, I feel the need to share it and maybe prevent another from going through what I endured, but I am not sure that I can convey it to you….Here is my best shot…

My “occipital” headache lasted continuously for what felt like a month.  My MRI was negative and the doctor didn’t know what was wrong and I had to wait to get in to see a neurologist.  I had to lay flat in bed without moving, no pillow just flat with the lights out.  Pain meds barely touched the pain.  I was a zombie.  Eventually, the pain decreased and then it would come and go, giving me a few days relief before returning.  The doctors did not know what was wrong or what to do.  I don’t think they understood how bad it was.  

            I developed more symptoms: Fatigue, not the,,, I didn’t sleep well last night and now have to work a 12 hour shift type of fatigue, more like; I am wearing 20 lead vests, have been drugged with a sedative and now have to climb out of quicksand type of fatigue.  And I thought the headache was bad…well I never could have imagined that it would get worse…I started to have pain in my right ear that felt like someone was inserting a red hot rod into it.  This pain was accompanied by serious pain on the right side of my face in my cheek, eye and upper teeth – later in my story jaw pain can be added to the mix.  Doctor after Doctor told me that it was a migraine, I knew it wasn’t a migraine. I insisted it felt like nerve pain, they insisted it was not nerve pain it was a migraine and they prescribed all the most effective migraine medications but none of them worked. My fatigue, headache and facial pain would come and go…in cycles. It lasted anywhere from a few days to a week then it would disappear for a week or two and then it would return. It was hard for me to plan anything in advance, some days the pain was mild and I could pretend and  on other days I couldn’t get out of bed. It was so unpredictable and didn’t make any sense.   

More mysterious symptoms came and went. Migrating arthritic pain in my neck, spine, shoulders, elbows, knees, muscle pain and spasms,  pain in both my feet….oh boy it felt like I was walking on glass even when I was sitting down. None of my symptoms fit into the doctor’s little box of symptoms.  They brushed my symptoms off; “you have tennis elbow” – uhm…how the hell did I get tennis elbow! or “you are getting older, it is normal arthritis” –Geez, I am not that old, this doesn’t sound right! “It’s menopause, stress, depression” and my favorite “There is Nothing wrong with YOU!”   I began to think that maybe I was crazy, was I imagining this pain?  Maybe it was my fault that I don’t feel well.  Maybe I am living wrong…I have to do more yoga, meditate, eat right, if I live better……

I had short periods of time that I felt well, then I would sink back into the darkness of excruciating pain, fatigue and sickness.  I was losing friends, I felt like family members didn’t believe me, our finances were a wreck from all the doctor bills, I couldn’t work. My husband stood by me, but he did not know what to do. My kids suffered because I could not do things with them.  I went through phases where I was gung ho to find out what was wrong and I would go to doctor after doctor and then there were times that I just couldn’t deal with going to another doctor and I tried to manage on my own. I pretended to be normal a lot of the time.

In 2014, there was a period of time that I felt a little better, I saw an advertisement for a part time admission nurse position. It was a 4 hour shift. I thought I could do it. I applied and was hired. I didn’t realize how debilitated I was until I started working again. After my shifts I was too tired to make the 5 minute drive home without first taking a nap.  I was not myself, I struggled to do my job. Besides the pain, I couldn’t organize things – I had trouble giving medications, I couldn’t put together the sequence of looking at a med order, picking the med and then administering it to the patient.  Walking down the hall was difficult, I felt so heavy with fatigue and  I couldn’t think. I started having trouble remembering words.  I was scared, I felt like I was 90 and worried because my mom had passed from Alzheimer’s Disease.  Did I have Alzheimer’s Disease?  I had to resign.

That spring, my husband and I ran into an old friend, we mentioned my strange symptoms and we couldn’t believe it when he told us that his sister had similar symptoms and that she had Lyme Disease, an illness caused by the bite from a tiny tick, that is the size of a poppy seed. He gave me her number and told me to contact her.  But…I was tested for Lyme Disease and it was negative.  Even so, I started researching Lyme and found that the test has a very high false negative result.  I also learned that my symptoms were consistent with Lyme.  I asked several different doctors if they thought that I could have Lyme Disease.  Every single doctor that I asked said “Absolutely Not”.  By the end of July 2015, I couldn’t get off the couch.  I called our friend’s sister, who is also a nurse and she gave me the phone number of a Lyme Literate Medical Doctor.  

I called and made an appointment with Dr. S.  After, a two hour office visit that included a complete physical examination and an interview type assessment, Dr. S said that I had so many symptoms consistent with Lyme Disease.  I had clinical symptoms that I didn’t even realize that I had, such as balance issues, giant size pupils, loss of tone in my right cheek and  swelling at the occipital area of my neck. Blood work was ordered from a specialized lab.  

About two weeks later, my test results were in and Dr. S notified me that I was positive for Lyme Disease -Neuro Lyme.  As luck would have it, the tick that bit me, also carried two co-infections, Bartonella and Babesia! After receiving my diagnosis, I broke down and cried.tick

Lyme disease is easy to treat when it is diagnosed early.  Late stage Lyme disease treatment is long and painful.  Treatment SUCKS!  Symptoms get worse with treatment. When the antibiotic starts to kill off the bacteria, toxins are released and the body cannot get rid of the toxins fast enough resulting in a herxheimer reaction or die off – this reaction causes the symptoms to feel 10 times worse. Add in the co-infections and you really start having some fun.

The bacteria responsible for Lyme disease wreaks havoc on your body and treatment consist of killing off the bacteria as well as repairing all the damage that the bacteria has caused within your body.  It compromises your immune system and damages your muscles, joints and nerves.  Do you remember I mentioned that I had severe ear and facial pain that the doctors insisted was a migraine – well…it turns out that the pain is from a Shingles type virus that was triggered by the Lyme. (without the rash).  If you ever treated a patient with Shingles then you know how painful it is … and I didn’t have any pain management.  I can’t help but to feel a little bit bitter, I am hoping those feelings will subside as I continue to heal.  

So..YAY I have a diagnosis what a relief, but with a diagnosis comes a mix of emotions, Anger, Sadness, Grief, A sense of Loss, Hope and Relief.  I move through these feelings in no particular pattern, somedays I am still angry other days I am full of hope.  To be honest, I am not sure how I survived the years of pain.  When I think about it, I feel a pit in my stomach.  I am angry that doctors did not listen to me, they did not put my symptoms together. In the beginning, I wanted to write every doctor that I saw over the years a nasty letter, I wanted them to feel bad, to let them know I was really, really sick and to ask them why they couldn’t or wouldn’t help me. My desire to write those letters decreases a little bit each day. I am thankful that I found answers. I feel grateful for the small things, for the people in my life that believed in me and I am looking forward to the many healthy years that I have ahead. I still have a long way to go both physically and emotionally, But I know that I am moving in the right direction.nurseborn

Now, I spend my days focusing on Nurse Born Products, the business that I slowly built on the days that I felt okay.  Nurse Born Products specializes in selling products developed by nurses.  Due to some of the damage that the Lyme has caused, I may never work in the field again. Nurse Born Products allows me the opportunity to continue to work with my favorite people – other nurses.  I have met so many amazing nurse entrepreneurs.  I love working with my customers. I hope that you will stop by and check out my website nurseborn.com.

Here is a complete list of the symptoms that I experienced over the years: These symptoms would come and go, sometimes together and sometimes I would only have a few of the symptoms.  I think I am forgetting some of the symptoms – but I think you get the picture of how weird this disease is.

Occipital Headache

extreme fatigue

Ear pain

Facial nerve pain

Right eye pain

jaw pain

pain in my teeth

sores on my tongue

Neck and Shoulder pain

Sensation that felt like my spine was crumbling

rib pain

elbow pain

wrist pain

hand and finger pain

Extreme hot flashes followed by chills to the bone

loss of tone in facial muscles

trouble swallowing

red, sore peeling skin around fingers

Sacral pain

knee pain

foot pain

burning sensation on my skin

painful skin – bruised feeling when touched

Vibrating sensations on my nerves

pruritis

Restless leg syndrome

muscle cramps

memory loss

brain fog

feeling “hypoglycemic” without being hypoglycemic

forgetting words

inability to organize task

Insomnia

 

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The Dangers of Advocacy, and why you shouldn’t worry.

By | Advocacy, Health, Nursing, Workplace Safety, Workplace Violence | 2 Comments

You know the stories you have heard about healthcare people getting fired because they tried to start a union, and similar things?

Here is a message from our National Director, Jalil Johnson.  I will expand on it in a moment:
We don’t anticipate anyone having any trouble with their employer because of the SMYS for Change advocacy work.

Rest assured, if any of our members have trouble over this advocacy work, we will make sure that those kinds of transgressions are publicized and media outlets all over the country will hear about it.

We want safety for nurses and better patient care. We will not be deterred.

There is no progress without struggle!

Changers, the Nurses all around the U.S.A have your back!

So, essentially…..

No employers are going to want to get on the wrong side of this thing in public, folks. Firing nurses and techs because they are involved in advocacy work with SMYS will get these employers nothing but a protest at their front door.  Do you think I won’t show up?

Please. You know better.voltaire

Look around you on Show Me Your Stethoscope.  Those are your brothers and sisters.  We are NOT going to allow a healthcare organization to fire you for doing the right thing, and then let them get away with it without publicizing their sins. We WILL let their clientele know that a member of the most trusted profession on earth was fired because he tried to keep the public safe.  

It is well established that I will tell it like it is, kids.  What do you think I am going to say when some ridiculous, lousy health care organization decides to make an example of you?

They cannot scare us, because we are united.  They cannot divide us by hurting one of us. It will only make us cling more tightly together.

Healthcare organizations need to understand that while we can go to work for a different employer, they cannot do business without us.  We will fight for safe staffing, workplace safety, and respect.wellbehaved2_5.jpg.resize.710x399

We are something that has never happened before.  Show Me Your Stethoscope has taken on a life of its own.  We are everywhere, we are united, and they cannot fight all of us.

And if you bring the rest of your coworkers in, you will be even safer.  Who wouldn’t want the chance to change nursing as we know it? Who would fail to be part of a movement to make our patients safer?

Nobody I want to work with.

Love,

Janie

 

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Staff Safety. Dr Michael Davidson.

By | Nursing, Workplace Safety, Workplace Violence | No Comments

by Janie Harvey Garner, RN

Do you remember him? He was a physician at the prestigious Brigham and Women’s Hospital in Boston. A deceased patient’s son shot him to death.

Boston Police Superintendent-in-Chief William Gross, center left, walks through a revolving door as he departs the Shapiro building at Brigham and Women's Hospital, Tuesday, Jan. 20, 2015 in Boston. A person was critically shot at the hospital Tuesday and a suspect was in custody, Boston police said. (AP Photo/Steven Senne)

Boston Police Superintendent-in-Chief William Gross, center left, walks through a revolving door as he departs the Shapiro building at Brigham and Women’s Hospital, Tuesday, Jan. 20, 2015 in Boston. A person was critically shot at the hospital Tuesday and a suspect was in custody, Boston police said. (AP Photo/Steven Senne)

Today, the staff celebrated his life. It’s too bad they weren’t celebrating the great care he was still giving to patients. 🙁

Dr Davidson was the father of four girls, who will never have their dad again, because some complete psychopath thought it was ok to shoot their healthcare provider because they didn’t get the outcome they hoped for.

Dr Davidson was the same age as me.

Here’s a quote about him from a colleague:

I can’t begin to tell you what a shocking tragedy this is. Michael was 44 years old, a rising star in cardiac surgery. One of his focuses was patients undergoing transcatheter aortic valve replacement (TAVR) so he worked very closely with us medical cardiologists. He was known for his love and devotion to patients. He was also known outside of the work he did in TAVR, for tackling the toughest cases, the types of surgeries that other cardiac surgeons would decline because the odds were against the patient.

So, he was a patient advocate, talented, brilliant, and murdered.

Do you think this couldn’t happen to you?

Your hospital might be one of the facilities who forbids you to call the police when you are assaulted.

Do they think that is helpful?

Patients already often think they can do anything to us.

SMYS-Operations-Fundraiser1

SMYS Official can’t exist without you. Show your support for Unity and Change! Funds raised will be used for operational expenses. SMYS is a not-for-profit 501(c)(3) organization.

Ask your hospital what their long term plans are to keep you safe. You might be completely unsurprised by the answer.

They don’t have any plans.

You know when I started feeling safe? When I went to work for the VA. Because they have an armed police force on site. They do not put up with nonsense.

But that would be expen$ive.

Love,
Janie

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Patient Safety and the Blame Game

By | Nursing | No Comments

Have you ever made a medication error?

I have, more than once. The first time, I flushed a ‘heplock’ (we used to flush IV’s with heparin for the young kids) with 3 mL of 1000 unit/mL heparin. Instead of 100 unit/mL heparin.  Of course, this was in 1990 when I was pushing a med cart up and down the open bay ward on the 7th floor of Portsmouth Naval Hospital.  One multi-dose vial had a green label, the other a blue label. Nothing had a red stop sign on it.  It didn’t have a warning. We were supposed to read the vial.  I didn’t. I was busy and still had 22 patients to go.

I had to pass meds for 30 patients, on an open bay ward.  Yes, beds lined up next to each other.  I was constantly interrupted.  There were drawers in the cart stocked by pharmacy labeled by bed number.  No kidding.  I had a book on the top of the med cart so I could look up the drugs I had never heard of.  I was a Navy Hospital Corpsman and went to school for several months to do what it took you years to learn how to do.

Also, I think I gave the first TPA-like treatment to an ischemic stroke patient.  BONUS! 

When I told my charge nurse, he said that I should read the vials more carefully, and he told the patient’s nurse to watch for signs of bleeding.  He explained that it was better to check the vial against the MAR 3 times.

That was it.  No write up.  No Blame.  No Shame.  I have never given a medication without checking it 3 times again.

And then there was Kim Hiatt, who committed suicide when she was fired and blackballed for making a medication error.  Five years ago.  Have we gotten better?

I think we talk the talk, and do not walk the walk.  I think we may have gotten worse.  

We have taken away multi-dose vials, we have barcode scanning for med passes. Nurses patient-safety-10-638are actually disciplined for not barcode scanning, but hospitals are not disciplined for low staffing levels.  Nurses are the very final line of defense in patient safety. Not just any yahoo can pass a nursing college curriculum.  We are taught to analyze, anticipate danger, and critically think. If we have too many patients to care for, medical errors will happen and people will die.  Medical errors are happening and people are dying.  We hear about it on the news, in our professional journals, and from our coworkers.  People die in the hospital.

And we are blaming nurses, instead of the broken process of understaffing the inpatient units to save money.  We offer the nurses almost no support staff to take care of jobs that can be delegated.  We give them too many patients.  We add on extra charting, extra assessments, extra forms to sign, hourly rounding for patient satisfaction, and expect miracles.

Sorry, health care organizations.   We are through allowing it.  You don’t get to have ridiculously high bonuses and mandated overtime, while cutting our benefits, and endangering our patients without a reaction from us.  This is a new age. Welcome to social media.  We are nursecakeconnected, we are engaged, and we are ready to advocate for ourselves.  You don’t get to eat your cake and have it too.  Even this yummy cake.

As I said before…

We are coming for you.

Love,

Janie

SMYS For Change is the place you want to be if you are sick and tired of being considered an expense and a liability instead of the completely indispensible and largest segment of healthcare providers. 

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Violence against……You

By | Nursing | No Comments

The first time I was assaulted by a patient, I was told that I was not allowed to call the police.

I was a new graduate.  I don’t think I had been a nurse for longer than three months at the time.  The patient was alert and oriented, and angry. I was pretty insistent that I wanted to press charges.  I was told it was against hospital policy.1-10

I have blogged about violence against healthcare workers before. However, I would like to mention the lack of ‘zeal’ by the authorities to prosecute such cases.  Assaulting a police officer is prosecuted with way more regularity.  Why are we less important?

The Emergency Nurses Association is a huge advocate for staff safety. Penny Strachan-Blake is a member of Show Me Your Stethoscope, and an active member of the Florida ENA.  She encourages getting existing legislation changed rather than reinventing the wheel.

I challenge you to find out what your state’s laws are.  I would love to know if they are enforced.  I think this is something we need to address.   This year. I don’t think we can afford to wait.

M_GUYTAN_QUOTE_FB_SPECS-1024x535

Love,

Janie

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