3: Not My Lucky Number

This week definitely called for a second blog update because, honestly, my life has been more of a reality show than usual….. if that’s possible.

I woke up on Tuesday with some serious back pain in a new area. I spent most of the day in tears, and to spare you the details, I was even crying while trying to use the bathroom. It was truly rough. I ended up calling all my doctors—yep, every single one—and they all agreed I needed to go to the emergency room, even though I begged them to spare me from another ER visit! So, once Tom got back from the city, our late night adventure kicked off. My daughter, who was super worried, insisted on coming with me. She wouldn’t take no for an answer, and honestly, she was a lifesaver. She kept me smiling and I was really impressed by how mature she was throughout the whole thing. She made sure I was comfortable, fed and spoke to the nurses/doctors when necessary.

I decided to try a new hospital because why the hell not, might as well spread the love of #sarcoid and my journey with all Northwell ERs. I ended up at the Huntington Long Island Hospital, and I have to say it was very clean, great staff and pretty fast considering all of the emergencies they had come through the door.

Due to the location of the pain, I was convinced that this was either another kidney infection (which I as previously hospitalized for a few weeks ago) or kidney stones from my methotrexate, which are known to cause issues with organs. The doctor or more specifically I should say doctors, 6 of them came in together to get a glimpse of me, the pink elephant who has the rare disease. I guess they don’t see many sarcoid of the bone and bone marrow patients.:…. this was a learning experience for the masses, thrilled to be a lab rat. (Insert sarcasm) The sarcoid rash, which is beautifully placed all over my body became a highlight of the discussion. Then of course, as no one knew what to say, the doctors apologized for everything that I’ve gone through over the past few months. This seems to be the phrase used by doctors when they are shocked and stumped. (Gross picture warning below)

They ran a ton of tests, including a CT scan. While I was waiting, I managed to get some morphine and Tylenol, which really helped with the intense pain. Then the results came back, and it turns out my kidneys and liver are in fact  starting to show some wear and tear from the meds. On top of that, I found out I have another fracture in my spine. So, if you’re keeping track, that makes three (3) spinal fractures in total. No wonder I’ve been in so much pain and drowning in my own tears.

It's wild to think that this happened without any fall or impact that I know of; it just kind of appeared out of nowhere. The osteoporosis is pretty aggressive, to say the least, and honestly, it's a bit terrifying. If I'm being honest with myself, the whole situation feels really overwhelming. Every day, I wake up with no clue what my body is going to do.

The countdown to my appointment at the Mayo Clinic is on, but I'm trying not to get my hopes up too high since we don't know if they'll have a perfect solution for me. I'm aiming to stay positive and make the most of the visit, but I can't help but feel anxious about traveling and managing my health in a different state. Nothing risked then nothing gained…..at least that’s the saying.

A huge shoutout to everyone who’s been there for me, especially those who were texting me late into the night while I was in the hospital. Your messages and calls really mean a lot during this #healthbattle.