Category Archives: Chronic Illness

For the Love of Nursing

My love affair with nurses began at the age of 9. I was diagnosed with Crohn’s disease and spent 87 days inpatient at the Cleveland Clinic while doctors and nurses stabilized me enough to be able to return home. It was a nurse who held my hand and comforted me when the first IV I’d ever received was stuck in my hand. It was a nurse who administered pain medication to my broken body and helped me cope with learning about “chronic illness”, a big word for a 9 year old. It was a nurse who administered my TPN around the clock to keep me alive, and it was a nurse who emptied the hat in the toilet 30 + times a day when I had bloody diarrhea. It was the nurses who comforted my mom in the hall while she quietly broke down, and the nurses who brought my father pillows, blankets and midnight snacks every weekend when he stayed with me overnight. 31 years later, I still remember their names – Tina, Sandra, Paula , Jenny and Kris.

When I had my colectomy at age 15, it was the nurses who not only delivered expert care to all of my drains, catheters, NG tubes, and IV’s and PICC lines, but also they who encouraged me to empty my own ileostomy pouch, walk in the hallways and take ownership over my health and journey with chronic illness.

I wasn’t so sure at first, but on a bright sunny day in June of 1991, a young blonde nurse entered my room, pulled up the blinds, sat on my bed (ignoring my “DO NOT BUMP THE BED SIGN” – I was a bit of a difficult patient), and introduced herself as the ostomy nurse. ET nurse to be exact (now called a WOCN – wound ostomy and continence nurse). I immediately hated her. But as she worked with me to change my pouch and teach me the fundamentals I’d need to go home, she told me a story about a young girl who was born with a birth defect that led to years of incontinence, months in bilateral leg casts, and a permanent urostomy. That girl was her. That moment began a lifetime relationship.  And it cemented my desire to become a nurse myself one day.

Fast forward 4 years and 4 more surgeries for a failed jpouch. While in highschool, I did a work study program and obtained my nurse assistant certification before graduating. I worked in nursing homes and extended care facilities all through my junior and senior year, even while battling my own health issues. It was not a glamorous introduction to nursing, but it taught me a lot about what it means to be a “caregiver”. I had a mentally disabled women with dementia bite me. I had feces flung at me by a gentleman with Alzheimer’s. I walked in on an elderly female patient sharing an amorous tryst with another resident who was not her husband. I wiped a lot of butts, combed tangles out of the scalps of many, fed mouths that barely remembered how to chew, and watched several patients pass from this world to the next. And I did it all with a full heart and a passion to make a difference, even if to just one.

After graduation, I went off to college and enrolled in a BSN program. I miraculously completed two years, all while battling a leaking jpouch, abdominal abscesses, and an infected coccyx that almost cost me the ability to walk. At the end of my 2nd year, my parent’s divorce became final, and my father informed me that he would no longer be paying for my health insurance. I had two options. Continue school with no coverage, or get a fulltime job that offered benefits to ensure I continued to receive the care I needed. For a 19 year old with chronic illness that needed $800 worth of ostomy supplies each month just to be able to function, there really was no choice involved. I quit school and found a job.

But I was blessed to find a good one. I received an offer from the Cleveland Clinic Children’s Hospital to work as a PCNA (Patient Care Nurse Associate), and quite ironically, it was on the nursing unit where I’d received all of my care during my Crohn’s battles and ostomy and jpouch surgeries. What an honor to work with the amazing nursing staff who had helped me through one of the toughest battles of my young life. Those ladies taught me the ins and outs of floor nursing – the non-compliant patient, the distraught family member, the lack of a pee break in a 12 hour shift, the 5 minute lunch in the backroom standing next to the Pyxis, and so much more. They each had a unique personality and approach to nursing, and I learned something priceless from each of them. Probably the most important life lesson came during my second week on the floor,  when a young GI patient (of course I had a heart for him!) went down to the OR for a routine colonoscopy under anesthesia. He didn’t come back. He coded on the table, and as I accompanied his nurse Jenny over to the OR suites to walk his mom back to the unit, we had a heart to heart and I asked her if the pain I was feeling over losing a patient would ever lessen. She looked me square in the eye and said “NO. And if it ever does, then you are no longer good at what you do, and it’s time to move on.” I’ve never forgotten that moment and have applied it many times over in other areas of loss in my life.  The nurses of M-30 from 1996-2000 showed me the best and worst of what nursing could be, and that even at it’s worst, it was still a noble and anointed profession. Jenny, Kim, Molly, Mary Beth, Marianne, Caroline,Leslie, Jen, Kristen, Shannon, Lisa, Cheri, Dawn, Kelly, Kara, and Sue – I salute you!

Over the years, it has consistently been nurses who have made a profound difference in every aspect of my life with chronic illness. I have some amazing physicians involved in my care ; I’m incredibly blessed. But it has been the nurses who have sustained me over the years.

Marlene, my surgeon’s right hand woman, who makes things happen when I’m sitting in the ER for hours on end, who responds to my emails not days later but minutes later, who gets me the prescriptions I need within hours, and who checks on me via Facebook when she’s off the clock, just because…

Mary, my dermatology nurse who squeezes me in on her lunch hour for a  same day Kenalog injection when I’m in agony because the abscesses and pyoderma have decided to flare, who held my hand as I cried after a particularly brutal examination, and who recognizes so delicately the dignity that I have all but lost as a result of this condition.

Paula, Coleen, Chizu, Nora, Joy, Roxanne, Aimee, April and all the other amazing WOCN’s who have graced my life with their presence – I am forever indebted to your knowledge, kindness, and inspiration. Thank you for walking me through ostomy management, open incisions, wet to dry packing, the healing of multiple wounds and so much more. You are THE LIFELINE for ostomy patients.

And to the nurses who volunteer their time at Youth Rally, who know that the best medicine comes not in the form of a pill or injection, but from storytelling, shared experience, laughter, and fostering independence.

As life often dictates, my plan to become a nurse didn’t quite come to fruition. But I never gave up my passion. I’ve held some amazing roles professionally ; I’ve been a development and support manager at the Crohn’s and Colitis Foundation, I was president at the United Ostomy Associations of America, and I worked for one of the largest ostomy supply manufacturers in the world. All of these positions included patient care and education in some way, shape or form, and it helped satisfy that passion I had for caregiving and healing . But I never have gotten over my regret of never becoming a nurse. There has always been a still small voice in the back of my heart whispering “You are a nurse. Finish your dream”. But something has always gotten in the way. Health, family struggles, finances.

But as I sit here, recovering from my 19th surgery, and approaching my 40th birthday, I am stirred so greatly inside by the NEED to fulfill my call. Someone, somewhere, needs a nurse with exactly my skill set and life experience. And I am doing myself and them a huge disservice if I do not answer that still small voice with a resounding YES. As it happens, a series of somewhat unfortunate events (death of a parent, loss of a job, health setback) have led me to a place where, for once, the timing is right and the pieces just fit.  Last month, I enrolled in nursing school and will start fulltime in January,  with really nothing but hope and a prayer that this time around, the dream will be realized. I have no idea how it all will work out with my finances, health challenges, and family obligations, but I feel like the risk of not following my dream is greater than the risk any of these things presents.

But one thing I know for sure was taught to me by all of the nursing angels I’ve encountered over the years; you can teach anatomy and physiology, you can teach assessment skills, phlebotomy, CPR, pharmacology, and so much more; but you cannot teach passion, instinct and intuition.  I know, deep down in my soul, I’ve always been a nurse. It’s just finally time to get the credentials to prove it.

 

36 Hours Out. Not for the Faint of Heart.

I’m 36 hours out of surgery #19, and things are not going as I expected. (Do they ever?). I’ve got A LOT more pain than I anticipated. I had a procedure like this once previously, and I don’t recall the discomfort being anywhere near this bad – however, I also had a major abdominal wall rebuild and stoma relocation at the same time, so I spent a month in the hospital on a PCA pump, with a nurse changing all the dressings in the perianal area, so perhaps my memory is a bit skewed 😉

At any rate – YOWSERS! Any time I move, the gauze packed in and covering the wounds rubs and it FEELS LIKE SANDPAPER IS BEING RAKED OVER THE RAW TISSUE. Sorry for that visual – I’m just keepin’ it real. And then there’s peeing. It feels like acid is being poured over my lady bits. I’ve been given a lovely peri bottle to use to “ease the discomfort”. HA! Suffice to say, I have a gained a whole new perspective on the pain that must be experienced by burn victims, and cannot imagine this type of agony over an entire limb, or whole body.

Now, don’t fret – I have good ol’ Percocet to help me with the pain. However, it seems in my old age, that one Percocet does ABSOLUTELY NOTHING, but two Percocets KNOCK ME ON MY ASS. So what’s a girl to do? Walk around with sandpaper on her privates, or lay (sitting is not yet an option) comatose on the couch watching Netflix? I have vacillated between the two today. I think I am higher than a kite right now because I just wrote an entire blog about sandpaper and acid on my perianal area. Don’t do drugs kids – they lead to oversharing.

Sorry to those I’ve just scarred. Crohn’s disease is relentless, and it’s extraintestinal manifestations aren’t for the faint of heart. Deal with it.

I have to.

 

Surgery #19

You read that right. Bright and early Tuesday morning, I will undergo my 19th surgery at the Cleveland Clinic. 

Most of you know that I haven’t really been “healthy” for about the last 2 1/2 years, but I haven’t elaborated publicly about what’s going on specifically. The long and short of it is that my immune system is attacking my skin, both around my stoma and in the perianal area. Not a fun thing to talk about or endure, but nothing about Crohn’s disease or chronic illness is glamorous or sexy. This “attack” comes in the form of painful, deep abscesses that eat away at my skin, leaving painful open wounds and fistulas. I have been on Humira for 7 months to try and combat the aggressive nature of this immune war, and it has helped. The abscesses have lessened in frequency and severity. But they’re still occuring, and I’ve been left with some areas that just won’t heal. So on Tuesday, my colorectal  surgeon is going to excise those areas, believing that removing that diseased tissue will make way for healthy tissue to granulate together and close over.

I wish I could say that, after 18 surgeries, this’ll be an easy one. But the truth is, none of them are easy, and NO, you don’t get used to having surgery, even if you’ve averaged one every other year of your 40 years of life. If anything, the older I get, the harder it gets. Physically, I just don’t recover like I used to. Anesthesia is a real bitch. It wipes me out – not just for hours, but weeks. The “fog” is hard to shake. And my almost 40 year old body doesn’t heal at the rate at which it once did. It’s been through the ringer, and it tells me “Listen- we have done this 18 times. We’re gettin’ real tired of bouncing back. I know you have this, this, and this planned, but um, too bad. You’re going to have to chill while we get our act together.” So, I’ll chill. I won’t like it. But I’ll chill, and hope my body will get it’s crap together quickly, because those of us who’ve done this before know that the hardest part of recovery is the mental battle.

Healing ravaged tissue will be the easy part (hopefully). Antibiotics, packing/dressing, and lots of protein. I know the drill. Well. But the mental aspect of healing and recovery is daunting. Even after all of these years. A positive attitude is hard to hold on to when life repeatedly knocks you down. I once described the phenomenon as “losing my mojo”. I’m a decently optimistic person, I’m more self-aware than most, and I’m generally confident in my abilities, but every time I have a health setback, all of that goes out the window. For whatever reason, I no longer feel capable. I second guess. I need reassurance. I feel needy. I forget I’m a gutless Wonder Woman and instead, feel more like a gutless wonder. 

Recovery from my last surgery took 4 months. It was a good 5 months after that before like myself again. I CANNOT deal with that again. I. JUST. CAN’T. There are too many exciting things on my horizon, and I won’t be ready to tackle them head on if I’m not 100%.  Would you pray with me, and for me, for a successful surgery, quick and easy recovery, and the support and encouragement I need to battle the days ahead? Thanks friends.

 

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