Welcome to Florida: A parable for nurses who become disabled

            

      At some point in time, most parents of children with disabilities come across the “Welcome to Holland” message written by Emily Perl Kingsley in 1987. The message originally appeared in the Los Angeles Times, in Abigail Van Buren’s “Dear Abbey” column. For those who aren’t familiar with the story, it’s about someone who plans a vacation to Italy but ends up in Holland instead. This story has guided my life as a parent of a child who is disabled and my work as a nurse and nursing educator. Below, I have adapted this message for nurses who become disabled.

            I am often asked to describe the experiences of nurses who become disabled — to try to help people who have not shared that unique experience understand it and imagine how it would feel. It’s like this…

            It’s like planning a fabulous trip to New York City after graduating from nursing school. You plan to work at a prestigious medical or research center there. You buy a new stethoscope, lab coat, scrubs and medication handbook. You plan to work as a staff nurse and eventually get promoted to unit manager of a busy intensive care unit or emergency department. On your days off, you are eager to visit the Statue of Liberty, Ellis Island and the Metropolitan Museum of Art. You can’t wait to see the bright lights, Time Square and Broadway. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags, and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Florida.”

            “Florida?” you exclaim. “What do you mean Florida? I signed up for New York! I’m supposed to be in New York. All my life I’ve dreamed of going to New York. I’m not old enough to move to Florida!”

            But there’s been a change in the flight plan. The plane has landed in Florida, and there you must stay. The reason is that you have a disability.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

            So you must go out and buy new guide books. And you need to learn a whole new language — the Americans with Disabilities Act, vocational rehabilitation, reasonable accommodations — and perhaps go back to school for an advanced degree. You may need to buy some new equipment and learn new ways of performing your nursing skills. But a bonus will be that you will meet a whole new group of people whom you would never have met.

            Florida is just a different place. It’s slower-paced and less flashy than New York. But after you’ve been there for a while and you catch your breath, you look around and begin to notice that Florida has beaches, warm weather, magnificent sunsets and palm trees. Florida has the Salvador Dali and Morikami museums. And it has patients who still need your care — in hospitals, nursing homes, health departments, schools, community centers, camps, case management, infection control, administration, teaching and

research positions.

            But everyone you know is busy coming and going from New York City. And they’re all bragging about what a wonderful time they are having as nurses in New York. For the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, ever, ever go away, because the loss of that dream is very significant.

            But if you spend your life mourning the fact that you didn’t get to New York City, you may never be free to enjoy the special, lovely things about being a nurse in Florida.

This is an excerpt from the book "Leave No Nurse Behind: Nurses working with disAbilites". 

Please share your thoughts below.



With thanks,
Donna

Advice for healthcare providers from a nurse with autism

Anita Lesko, BSN, RN, MS, CRNA

As a mother of a daughter diagnosed with autism and related disabilities, I am so pleased to announce the publication of Anita Lesko's much needed book. It should be required reading for nursing, nurse practitioner, medical and allied healthcare students. It would also make a wonderful gift for parents to give to their child's healthcare provider.

The book provides quality advice from a nurse with autism! 

"The book is geared for use in healthcare curriculum courses, as well as a guidebook for all healthcare and allied healthcare providers. It's important for healthcare professionals to realize that communication starts at the Admissions Desk and follows through to the patient's discharge, Whether the patient is simply going for a routine doctor's appointment, or getting admitted for major surgery, the autism patient needs specialize care for optimal results."

"This book is a comprehensive guide in understanding autism, formulating effective communication strategies, and developing best care practices. It covers sensory issues, pain tolerance, body awareness, communication challenges, legal and ethical issues, HIPPA compliance and the Americans with Disabilities Act." 

Congratulations Anita! 

Cheers! 
Donna

Breath of a nurse with a tracheostomy

Michelle DiGiacomo, LPN

Born and raised in New Orleans, Louisiana, I am 44 years old and divorced with one daughter.  Neither of my parents attended college. My mother was born in the USA but my father is a Cuban refugee who sought asylum here in 1961. I attribute my determination to them.

I attended a local university right after high school, unsure of what I wanted to study. In my senior year, I decided to take a year off to get married. I later learned that I had obstructive sleep apnea.  Because I only had a health insurance policy through school, I went to Charity hospital. I was told that the solution to this problem was a trach to allow me an alternate airway to avoid my obstruction. I was not told about a CPAP machine or offered other less severe procedures.

 After the trach, I was unable to speak for 6 months. I was depressed and certain that this was it for me. No career. No normal life. Awarded social security disability.  When our family moved to Memphis, I found a new ENT to oversee my care. This doctor explored the nature of my obstruction and determined that my over-sized tonsils formed a barrier with my uvula.  After surgery, I was able to reverse the trach. But, just a few months later, I started having difficulty breathing again.  This time, the culprit was scar tissue at the site of the original trach. It was suggested that the first procedure was done incorrectly. Where the trach should have been excised, it was folding back and the outer portion of my neck, skin that I needed later, was removed. This made it bulky and pulled in irregular ways. I endured 5 more procedures in an attempt to correct this stenosis before it was decided that it was a permanent situation.

I will always have to have scar tissue surgically removed every few years.  When I have 50-60% of my airway open, I can comfortably cap my trach or wear a speaking valve.  When scar tissue grows, I have to leave it open to breathe below the problem area.  Other than that, I don't have any respiratory issues.

I could not fathom a job that I could do. Depressed, I thought life was over. I stayed home to avoid public stares and questions. It was not living at all. Then one day it all changed. I was out, forced by my family, and a stranger was staring at me. After the meal, she approached to explain and apologize. She said that she had a baby who has a trach and seeing me out with my family, living a normal life as she put it, gave her hope for own child's future.  In the next few days, I went out more and had similar experiences. That's when I knew that my trach could be useful. My life could be used as a living testimony and example for others.

So, with a tracheostomy, a toddler and no hope of working, I decided that I wanted to complete my Bachelor's degree in nursing. After applying and being rejected from every nursing program in Louisiana, Hurricane Katrina forced me to relocate. The good news is that the move provided new nursing programs to consider.  I applied and was rejected by RN programs in Tennessee, Mississippi, and Arkansas. I was very sure that my trach was the reason for my rejections. I had to find another way!

 I read that licensed practical nurses (LPNs) could get nursing degrees online. I didn't even know what an LPN was but I decided that I had to become one so that I could use that avenue to get to my ultimate goal. I applied and was rejected by a few LPN programs until I found one that accepted me. The Director of Nursing explained all of the reasons that she did not want me to attend and all the reasons that she legally could not stop me.  She  hoped I would forfeit my place for someone who had a chance at success.

I claimed my rightful place!

So began my mission. I met more than a few critics and doubters and hit one brick wall after another but I refused to give up!  I started to think, even if I cannot actually work in the field, I still wanted to know if I could succeed. If I had the stuff to become a nurse. Once I finally got into a program, there was no stopping me. It was there that I got my first support. Not from the instructors, or administration, not even from my husband, but from the patients I met at clinical sites.  Before them, I was pretty sure I was wasting my time. In the hospitals, I was so well received by staff and patients. I was encouraged by everyone at every turn.  I freely answered questions, taught my fellow students from my experience and began to accept this as part of me. It was no longer a problem, just a difference.

I graduated with a 3.86...third in my class!

I have never had any difficulty getting a job or been mistreated by employers.  I have had issues with coworkers. The main issue on the job has been questions about infection control. Once the facility and legal department are satisfied that I am not at any additional risk, I am hired and treated as everyone else. I have not needed any accommodation except when I need time off for procedures.

My first job was at a skilled nursing facility in Memphis. Then, I was hired at a large hospital in New Orleans in the oncology department.  An RN and LPN team provided total care for a pod of up to 8 patients, many receiving chemotherapy, radiation or a bone marrow transplant. I also worked PRN at a home infusion company as a clinical liaison where I primarily did patient teaching. Later, I was offered a full time position with the  home infusion company monitoring transplant patients on inotrope therapy. After that, I worked in nursing homes. I am currently working in a hospital setting in  long term acute care.  Its med/surg with a fairly high acuity. 

Looking back, I was afraid that life would never be the same after my trach. I was right but not in the ways that I first thought.  I struggled with self-image. I was so young and overwhelmed by the medical equipment.  I had to breathe humidified air several times a day, clean my inner cannula, or use disposable ones. To keep the skin intact around the stoma, I had to fight moisture, suction myself and change the actual trach tube every few months. It was so much to learn and so many ways I had to adapt my life around my special needs.

I am hardly qualified to dole out words of wisdom as I am still trying to figure it out myself. I can say that taking the power back was key for me.  If I allowed my trach to steal my future, then it truly would be a disabling condition. I had to carry on as I would have without it. I lost a lot of time being angry about what amounts to a botched surgery that I didn't need in the first place. Once I decided that I would pursue my career and socialize again, this issue could no longer hurt me. I am living my life and enjoying the same ups and downs as everyone else. I also learned that before I could put actions behind my decisions I had to accept my difference. Once it was no longer a problem for me, it would no longer be a problem for anyone else.

My trach is a part of me, like being brunette, short in stature or female, but it alone does not define me.  I am the sum of all of my parts. So you will never hear me trying to deny my trach, hide it or eliminate it from the equation.  Sometimes, people with disabilities, in their fight for equality, want others to ignore their issues in the hope of being treated like everyone else. But we are not like everyone else. One might even argue, we are in some ways better, stronger, more determined, resilient and empathetic. I will use my trach and any tool in my arsenal—everything I am and every breath I take--- to be the best nurse that I can be.

Michelle can be reached at: mdigiacomo0430@gmail.com

From nurse to patient to disabled nurse

Danielle M. Fullen MSN/Ed, BSN, RN

       All my life I wanted to work in healthcare.  I graduated high school in 1996 and went to a university majoring in pre-med.  In October, my whole world turned upside down; my mom was diagnosed with Acute Myeloid Leukemia (AML).  It was extremely hard for me to concentrate on school.  I started failing and eventually quit. 

       My mom is the reason I became a nurse.  The nurses took such good care of her. They sat and comforted her, talked with her without rushing her, listened and cried with her. I thank God everyday she survived.

I started nursing school in 1999 at St. Francis Medical Center School of Nursing (no longer exists). It was tough, but I loved it.  I graduated in June 2002.

      My first nursing position was on an adult cardiac step-down floor. Even though I loved working there, I had a nagging feeling that my calling was —working in pediatrics.  In 2003, I accepted a position in the pediatric intensive care unit.  I immediately knew I was meant to be there. 

         Over time, I dreamed of becoming a pediatric nurse practitioner or a flight nurse.  My dreams were crushed in May, 2004.  I started having lower back pain.  I thought I was working too much and it would go away.  It didn’t… it just got worse.  An MRI showed that I had both Degenerative Disc Disease (DDD) and a Herniated Disc (HD) between L4 and L5.  An x-ray showed I had a fracture at L5. 

I refused to give up!

      Physicians said, “You are too young to have back surgery” and “I don’t want to keep giving you narcs”.  I did not want surgery and I did not want narcotics.  I wanted to be better and go back to my life. Physical therapy helped, but only when I was there.  After PT, the pain returned with a vengeance.  I also had 3 Lumbar Epidural Steroid Injections (LESI), which did not help.  On September 7, 2005, I had a spinal fusion from L4 to S1.  My recovery went as planned. I was in PT and the medication and therapy were helping.  I thought my plight was finally going to be over.  I was wrong, very wrong. 

I refused to give up!

         Sometime in 2006, I started having severe, sharp pains in my lower back.  Suddenly, I could barely walk.  There were times I could not get out of bed, and when I tried, I screamed.  I would be awake most of the night crying.  My meds weren’t working anymore. 

         I was back to work in the PICU.  I had such a hard time walking that I had parents, whose children were dying, asking me if I was okay! 

         I went back to my surgeon and had x-rays, CT, MRI, and he could not figure out what was wrong. I ended up losing my job and my remaining dignity.  For a second opinion, I found a reputable orthopedic surgeon. He could tell, just by the x-ray, that all the metal in my lower back was loose.  So, I had my second back surgery, a re-fusion of L4 to S1 with a left iliac crest bone graft.  My recovery process was rough and I never had complete pain relief. 

I refused to give up!

         I tried to work as a floor nurse to no avail.  I ended up having to take a light duty position as a case manager.  I loved it!  But, three months later, I was told the position was temporary and I was forced to resign. Then, I worked at a pediatrician’s office and then told I needed surgery again. 

         I had my third back surgery—a re-fusion at L4 to S1, a fusion at L3 to L4, a laminectomy at L3 and 2 partial laminectomies at L2 and L4.  Since then, my pain has been horrible and excruciating.  My surgeon said I needed to see a pain doctor.  He also told me something I will never forget:

“Danielle, you do know that your nursing career is over now.”  I remain determined to prove him wrong!

         Depression consumed me. Thankfully, I found a wonderful pain management group. They listened, helped, and treated me like a human being.

        In 2009, I applied for Social Security Disability and was denied. My pain doctors gave me medication, spinal injections and a rhizotomy.  The pain remained unbearable.  They decided I should see another surgeon to see if I needed another surgery or if I could be a candidate for a spinal cord stimulator (SCS). 

         In 2011, I saw my third surgeon, for my forth major spinal surgery.  This surgeon tried his best to control my pain. On March 7, 2011, he performed a spinal re-fusion L3-L5 and Dynamic Stabilization between L2-L3.  My recovery was rough. No PT as the pain might increase and interfere with my recovery.   

I refused to give up!

         In 2012, I hired an attorney and applied for social security disability once again. This time I got it! 

         Overall, I had received over 30 epidural steroid injections (ESIs).  Not one ESI ever worked longer than 2 ½ weeks.  The pain doctors wanted to continue giving me the ESIs but I found that they are not FDA approved due to the potential for paralysis.  So, I moved on.

         I found a new team willing to help alleviate my pain. With their help and guidance, I decided to have a spinal cord stimulator (SCS) placed.

         On August 7, 2014, I had the SCS trial and it worked!  It helped decrease my pain by at least 55%.  Since the trial worked, I had another surgery – and the SCS was permanently placed.

         The permanent SCS started out working well; and decreased my pain by about 55%. I finally thought I could go back to work. But once again, I was disappointed.

         For three months, the SCS was effective. Then the pain increased despite the fine tuning. I had this foreign object in my spine doing nothing. On July 6, 2015, I had my sixth spinal surgery – I had the SCS removed and ended up with thoracic pain due to the procedure.

         In spite of the pain, I went to Chamberlain College of Nursing online and graduated with my BSN in 2011.  I then graduated with my MSN in 2013 and later obtained a post-graduate specialization in nursing education. 

I refused to give up!

My nursing career is NOT over!

         Currently, my pain doctors and I are working on a medication combination. The excruciating pain is in my lumbar spine, shoots up to my thoracic spine, and into my left hip and thigh. I have been diagnosed chronic lower back pain, degenerative disc disease, lumbar radiculopathy, lower extremity radiculopathy, spondylolisthesis, spinal fracture (L5), spinal stenosis, lumbar pseudo arthritis, herniated disc (L4-L5), lumbar discogenic syndrome, post laminectomy syndrome, spinal hemangioma, and left hip bursitis.

Through all this excruciating pain, I remain positive.  Positive that one day, I will have some relief and get back to work in nursing, as a nursing instructor.

Danielle Fullen can be reached at:  chloebear3@hotmail.com