Help Me Win My Fight Against Rare Bone Infection

It is with a heavy heart that I inform you all that I have a rare and severe bone infection called osteomyelitis in and around my right SC joint. What I know as of right now, is that it has formed 4 abscesses. Three of these are very large and around the size of a golf ball (the largest one is inside my chest cavity), and all of them are rapidly growing as my bone and tissues continue to die. I pray it’s only localized to this area of my body. I’m scheduled to undergo a major surgery this Friday where they will be removing my entire right SC joint and surrounding dead bone and tissue.

The treatments and recovery for all of this will be long and intense, and I’m here not only to inform you of what’s going on, but also to humbly ask for help. The cost of surgery, imaging, medications, at-home care, follow-up appointments, loss of work, etc. is astronomical, and I'm in urgent need of funds to pay for this in addition to rent and food. I've already drained my bank account fighting to survive. If you can afford to do so, please consider donating to my GoFundMe. I know my purpose on this planet is to give back, and to help others. I’ve done so in my advocacy and inclusion work for years. However, I cannot continue helping the world at the scale I want to if I’m not myself healthy enough to do so.

I would be forever grateful if you could please share this and my fundraiser far and wide.

I’m now going to answer some questions that you all may have. Questions like:

1. When did this start?

2. How did this happen?

3. Does it hurt?

4. How rare is osteomyelitis in the SC joint?

5. What does surgery and treatment look like?

6. How will this effect the rest of my life?

7. Will I still be able to lift weights and compete in sports?

1) When did this start, and how did this happen? Those are good questions as I’m not 100% sure. Many of you may know that I have a disorder called chronic myofascial pain syndrome. With this invisible disability, I’m in constant pain and random flareups and odd things tend to happen within my body. Back in January of this year, I started noticing a couple hard lumps at my right SC joint. At first, I thought it was just some weird thing as a result of my disorder or maybe just a partially dislocated SC joint due to how it felt, my mobility, etc. Then in late May, I noticed they had grown quite a bit and other random things happened at times like massive inflammation around my SC joint and neck, so I set out to get things figured out. First, I was referred to a chiropractor (again thinking it was just a dislocated SC joint). Physical examinations, tests, and x-rays all showed that my SC joint was in perfect alignment, and nothing was out of place. This had me confused and worried. Doctors all said that based off of symptoms I was having that they were worried it could be one of two worst case scenarios (lymphoma or osteomyelitis). My next step was an MRI, which confirmed that I had severe osteomyelitis. The cause of my osteomyelitis is still unknown. Doctors hypothesize that it could be from a bacterial infection, or from arthritis in my SC joint that became really bad. I will hopefully know more after more tests.

2) Does it hurt? Yes. When it is flared up, then it is excruciatingly painful and I’m not able to change my clothes by myself, move my right arm or my neck, and even being still is crazy painful. When it is calmer, I’m able to go about most of my day doing most of my normal routine but with lower energy and a constant strange feeling of pressure and pain in and around the affected area.

3) How rare is osteomyelitis in the SC joint? Extremely rare. According to a scientific study from 2014, up until that year only 225 cases had been documented of osteomyelitis in the SC joint over the previous 45 years. Most of the time osteomyelitis usually affects the long bones of arms or legs in children and the spine, feet or hips among adults. I was also told that out of the small number of SC joint osteomyelitis cases documented, I’m definitely one of the youngest (36 years old at time of diagnosis). Usually this occurs in elderly patients on dialysis, etc.

4) What does treatment & surgery look like? Due to the severity of my case, the surgical removal of my entire right SC joint and surrounding dead tissue and bone is unfortunately necessary. From there I will have a wound vacuum attached to the area that was operated on for at least a month or two until the wound is healed over. This is supposed to be very painful. I will need to keep the area clean and will have an at-home nurse every 3 days for as long as necessary to tend to my wound and the vacuum. I will be on heavy antibiotics and painkillers before, during, and after surgery. There will be countless tests and imaging done for a long time after the surgery to make sure proper healing occurs and to be certain the infection isn’t anywhere else in my body. After my wound heals, I will most likely have doctors’ appointments every few months for several years. If any of the tests from this week come back showing a bacterial infection was the cause or is present currently, then I will need to be on IV antibiotics for a minimum of 6 weeks to 6 months. Osteomyelitis is known to become chronic is some patients, and I’m praying that isn’t the case for me.

5) How will this affect the rest of your life? Honestly, I have no idea. For the foreseeable it will definitely be a big challenge while healing and getting myself back to some sort of normalcy. Right now I’m going to take everything hour by hour and day by day. I pray that I’ll heal quickly and become strong once again. One thing is for certain, I will not let this defeat me. I’ve been through too much to give up now.

6) Will you still be able to lift weights and compete in sports? This is a hard question for me to answer right now. There is so much uncertainty around how I’ll heal, what my upper body mobility will be like once my SC joint is gone and the bones fuse together, etc. I know I will have to learn how to do a lot of things differently, and maybe somethings I’ll never do again… only time will tell.

As many of you know, my athlete identity is one of my core identities. Playing for the Huskers as one of the first openly gay Division 1 college football players was riddled with a lot of struggles, which culminated in a severe spondylolisthesis and spinal fusion back surgery.

I then spent 10 years of my life listening to the fears that doctors, family, and friends told me of things I shouldn’t do because of my bad back. With this new diagnosis and surgery, I am adamant that I will NOT let any fear of what I can and cannot do limit me once I’m healed. Once I got back into sports after a 10-year hiatus due to back surgery, I felt more whole again since I was fostering my athlete identity. I do not want to lose that again. Even after my spinal fusion and diagnosis of chronic myofascial pain syndrome, I didn't let it stop me . I just have to do things differently than most people. I have a different body than most, and I learned what I needed to do for myself to be active and compete in sports at a high level.

This is going to be another massive challenge for me to overcome. I have no other choice but to succeed. I will be back out there playing volleyball, on the track competing in high jump, and in the weight room lifting again in time. I won’t give up.

I’ve overcome a lot of adversity in my life. I’ve survived near suicide and severe depression, bullying, abuse, an eating disorder, and numerous other traumatic experiences. From my football career-ending spinal fusion in college, to my diagnosis and constant battle with chronic myofascial pain syndrome, and now to this extremely rare case of osteomyelitis, I know I’m a fighter and will conquer this in time. This will just be another inspiring chapter for my book someday, and another thing for me to help inspire others.

I appreciate all of your support and help during this difficult time. I could not do this without you.

Much love,

Eric

P.S. Follow along my journey through surgery and recovery on Instagram @ericlueshen