The Big Scary: Shoulder Replacement Edition

If you know me, you know that asking for help sometimes seems impossible. I am a caretaker; it's what I love to do...so having to ask others for help taking care of myself just feels wrong. Unfortunately, I am in a highly uncomfortable place right now that leaves me with little option.

For those of you that do not know, I have a genetic condition called Ehler's Danlos Syndrome. It affects collagen and connective tissue and it is not selective in doing so; everything in my body that is made of connective tissue is damaged. The part of me that has taken the biggest toll is my joints.

EDS has stolen parts of me that I will never get back. It has caused me to have two major surgeries on my hip and shoulder, two heart ablations, and the loss of an organ. and now, it is stealing...everything, or at least trying to. 

I have a backstory to tell you. Bear with me, it'll make sense. If you don’t feel like story time, the short and sweet is that I am having a reverse total shoulder replacement next month and I very much need your help.  

In the summer of 2020, just six weeks before I began nursing school, I had major shoulder surgery on my right shoulder; without any insult or injury, I had completely torn my labrum and my glenoid capsule was drastically loose. My surgeon at the Mayo Clinic attempted to fix it by performing a 360 labral repair with capsular tightening and eight anchors. Unfortunately, the surgery failed within weeks.

I was determined to not let this hold me back. I was not going to be limited by EDS. I worked furiously in PT to get back to doing the things I love: acrobatics, aerial silks, rock climbing, and running. A couple of months into rehab, I woke up one day and could not bend over. That was very odd for someone who is hyper flexible. I went and got an MRI: my hip labrum was completely torn.

In January of 2021, I had a total labral repair on my hip. I started my second semester of nursing school post op day one. Yet again, I was determined. Yet again, I worked furiously in PT. My physical therapist and I worked and worked and worked until finally, I was strong enough to get back to the things I lived for. Finally. I was back on the wall, I was training for my next marathon, I was lifting and squatting heavy, and flying high at acro festivals.

I beat the odds. I rehabbed two major surgeries while surviving nursing school and graduated with honors. I proved doctors wrong. I did it. I made it, or so I thought.

A month after graduation, I started my dream job at UNC Children's Hospital. Not even two months had past before I was in a major wakeboarding accident and sustained a gnarly TBI. Another setback. 

I had to resign from the job I fought tooth and nail for. This...this was devastating. Once again, I was determined. I worked with OT and my physical medicine docs until I was eventually cleared to go back to work. I did it, again. They said I’d never go back to bedside, but I did it. I did the thing. I accepted a job at Duke and wound up on a floor that I absolutely adore: hematology oncology. I work with some phenomenal nurses and just celebrated my first year on the floor a few months ago. I love my floor, my patients, and those I get to work with. I look back at how hard I fought to get here and am just astounded sometimes. I don't know how I did it, but I did. I have the privilege to go to a job that I adore. I have the honor to take care of patients in their most vulnerable of times. I am lucky enough to make a difference. 

This time, EDS really is stealing major parts of me, parts that break my heart to lose; right now I am trying to stop it from taking my job, too.

A couple of months ago, my right shoulder started giving me trouble again. I returned to PT, Max accepting and matching my determination. I swear he is a saint. This physical therapist has been with me since day one and I truly do not think I would have made it this far without him. We worked diligently to attempt to rehab my shoulder. It was not working. The program that worked before was not showing success; my body was doing the opposite: my shoulder was getting worse. 

I finally had to face the music and see an orthopedic surgeon.

EDS and surgery do not mix. When you try to repair soft tissue that lacks the collagen needed to hold it together, the probability of it being successful is approximately 33%. This has proven to be true, as both my shoulder and left hip surgery have failed. 

Another labrum repair on my shoulder is not an option. A couple of weeks ago I heard the two words I never wanted to hear: shoulder replacement. Max said it first, mentally and emotionally preparing me for the possibility. I thought, no way. I turn 29 at the end of the month...and we're talking about replacing my joint? I couldn't believe it. I was in denial. I thought, more PT...more rehab, more rest, more...anything but another surgery. Anything but a replacement. Shortly after that initial discussion, things went downhill fast. My shoulder started to cause me debilitating pain. It subluxes every time I move it, dislocates whenever it so chooses, and causes me to sleep with it immobilized to prevent damage if dislocated in my sleep. The pain has become unbearable and has started to interfere with my work. I’ve gone two months hiding this Big Secret, but after the dislocations started happening at work and the pain reached the level it’s at, I knew it was time. I couldn’t keep forcing my shoulder back in place in tbe brrak room and I couldn’t keep grinding my teeth together, clenching my jaw so tight it gave me a headache, to hide the pain. 

I finally had to face the music and see an orthopedic surgeon. I was scared of the possibilities — the chances of what may need to happen. Turns out, those possibilities are now reality. MRI confirmed the suspicion and my surgeon then confirmed a replacement is inevitable. I am out of options. I am going to have a reverse total shoulder replacement at the ripe age of 29. That is unheard of. 29 year olds don’t have shoulder replacements. Typing those words seems so surreal.

I sat in my surgeon's office as he explained things to me that I already knew. Max prepared me to the extent he could, but hearing it from Dr. B’s mouth just made it so much more concrete.

He told me these things very bluntly; that's what I needed.

I will never do a handstand ever again. My days of rock climbing are over, forever. There is no more "Cassandra the acrobat." She no longer exists. I will never fly another hand to hand, throw another castaway, or land another cascade. I will never do another back squat or overhead press. After the replacement, I will barely be able to reach my arm above my head. This is my reality. I sat there, head in my hands, in utter disbelief. How is this happening? How is there another setback? 

This replacement, well, really EDS, is trying to take every single thing I love. The only thing I will not let it take is my job. I was born to be a bedside nurse. I live and breathe this job. I talk about it non stop. I fought hell and high water to be where I am and I am not going to roll over and give in. I will let them replace my shoulder and I will once again work my butt off in physical therapy to get back to functioning. I may never be an athlete again, but I will always be a nurse.

This is where I have to ask for help. This replacement is my only hope at staying at the bedside. It is the only way for me to continue living my life that I worked so hard for, the life that I cultivated for myself after the universe seemed to throw every seemingly impossible situation at me. 

Unfortunately, it will force me to be out of work for many, many weeks.  Double unfortunately, my previous surgeries and my abusive former partner have depleted my savings. I do not have the means to support myself being out of work for that amount of time. Triple unfortunately, I do not have short term disability. So, here I am, swallowing my pride and asking for help. 

I am in need of support to pay my rent/car payment/bills and board Jameson while I am out of work. That silly dog is my lifeline, but I don’t have an option but to board him as my shoulder will be in a sling for a decent amount of time and let’s just say that his poor leash manners + three flights of stairs + shoulder surgery are not congruent. 

Time is currently of the essence as my surgeon wants to operate in about six weeks. I have no choice but to turn to my friends for support and cross my fingers that this is successful.

Life isn't fair. 

Having EDS isn't fair. 

This is not fair. 

If my body wants to take nursing away from me along with everything else I love, it will have to try a heck of a lot harder. I am mourning the life I once had, the athlete I will leave behind when they take me into the OR. 

I will not let it take the one last thing I am proud to say I am, and that is a nurse. Not just a nurse, but a bedside nurse. I don't belong in a clinic or behind a screen. I belong on the floor. I need my shoulder to be functional. I need to be able to transfer patients, to reach the top shelf of the supply cabinet, to do chest compressions. I need this surgery and I need your help to get it. I feel lost, hopeless, and scared, but I know that if I could overcome everything I already have, I can do this too. I can do hard things. 

I just need your help.

Thank you for reading my long-winded story. I love you all.