I was considered a ‘sick kid’; in and out of hospitals since I was a baby. My ‘sick kid memories’ first started when I was 5 going in and out of hospitals for high fevers… even anaphylactic shock a time or three. This was my normal. It is what I knew. I thought everyone grew up this way.
The stuff I started to really deal with on my owncame when I began getting confirmed diagnoses on my first 2 autoimmune diseases at 17 years old. This number of autoimmune issues would only grow throughout future years, and are diseases I still deal with on a day-to-day basis.
But I digress…
By necessity I became more in tune with my body, how I ate, and what to do to stay moderately healthy and function with the body I was dealt. I won’t tell you it was easy, because it wasn’t. It took time. It still does. At this point, however, I was in college. This wasn’t something I wanted to deal with at all. It was too much. It had already been too much up until then, and now this? I got sad. I became angry. I literally yelled out loud to G-D, the Universe, Mother Nature and everyone and everything in between. I went on a hike up my favorite mountain where I had always found a sense of inner peace and sat for a long time looking out atop the trees and all the beauty that lay in front of me to help put things in perspective. It started to work. I slowly realized I could do this. It wasn’t like it was a death sentence (or Cancer) – it was a chronic set of issues that, while terrible, needed to be dealt with and no anger or sulking would help that happen.
Over the next few years I cautiously began to live again – feeling alive and rejoining society bit by bit with a growing sense of empowerment. Yes, I was sick, but I could still keep up. I kicked ass. I was finally arriving at a place of peace. I became dialed in with my body even more as I understood with a new clarity how my mindset impacted every part of my health. Sure, I would have bad days. They would come and I would have to handle them. I allowed myself to be sad or sick when that happened, but not wallow. Once again, a difficult task that still takes focus.
It was about this time I was graduating college. I was ambitious, hungry to see the world, have adventures and collect stories from those adventures. Well, I did just that. I had a job that allowed me to travel and for the next 5 years did public speaking, training people and handled conflict resolution. I met so many new people, lifelong bonds were formed and all while I was able to live in a variety of states and a couple of countries.
I was living in Germany when I was called back to the States for family reasons. It had been almost 5 years since I’d lived in the state my mom lived in and traveling home to stay put for a bit sounded lovely. I had handled my illnesses and had many adventures with more to come, I just knew it.
Although, I must say, had I even had an inkling of what lay ahead of me when I wished for adventures and an interesting life with stories to tell…I probably would have been a tad more specific.
I settled into a routine close to family and felt I needed a break from traveling for a reason I couldn’t quite put my finger on – which meant even when small business trips were offered, I declined. I was like that for about 6 months. I had been getting regular check ups and was technically deemed ‘my version of healthy’ but something inside me felt not quite right. My mind and body had become in sync almost too well. Most things I could handle on my own, but this new feeling, this ‘not quite right’ indescribable feeling wouldn’t leave me. I couldn’t put my finger on it, so I decided to have a full work up done of all my ‘known ailments’ just to try and understand this potential change in immune issues I might have to adapt or adjust to, making me feel more like me again.
I went into the hospital as an out patient to have the standard series of tests done, including seeing my physical therapist, blood tests, and body scans. After all was said and done, the hospital doctor in charge of my care told me that I was doing stellar. He said my autoimmune and health issues were well in check, and that even though my white cell count was high – that was perfectly normal for anyone with my conditions (which I knew). Most people know, but for those who don’t, a weaker immune system usually goes hand in hand with an elevated white cell count. That was my entire life – so I was alright with that and honestly happy to hear my version of normal health was in check.
However, I still felt off, but I put my faith in the medical professionals. After all, while they do “Practice Medicine” and don’t proclaim to know everything – these people were quite thorough. I convinced myself to let it ride and that perhaps it was just me readjusting to being back in a regular routine.
Nine months later (yes, the approximate length of a pregnancy) I still had that ‘not quite right’ feeling. I couldn’t shake it and it was becoming more of a nagging presence in my mind. Although if you had asked me to describe it – I couldn’t- I just knew my body and I knew I felt off.
I also realized I had to be my own advocate (another post I will write about soon) and scheduled to go back to the hospital as an out patient again. I had the same series of tests and scans as I had 9 months earlier, but this time when the doctor (a different one) walked in there was one small change in what was said about my results.
He told me that my autoimmune stuff was great – I was doing wonderful with it and he thought I handled everything quite well, which is why he seemed perplexed as he talked to me about the next portion of the test results.
“Sara” he began , “As I have said everything looks great, which is why it is so concerning and I am curious as to why you have not done anything about the mass in your chest.”
I looked up and said in a rather panicked tone, “What mass in my chest?!”
That was all I had to say. He closed my file and looked down – not at me. He couldn’t make eye contact. As he walked backwards out of the room and began to shut the door he muttered, “I am going to call your main private physician.” then he shut the door leaving me sitting alone anxiety already setting in.
I had a lump jump to my throat as my stomach simultaneously dropped. Intuitively I already had a feeling that I knew what was going on, but nothing was “known” yet. I picked up the phone in the hospital room and feeling like I was going to vomit, called my mom and stepdad.
“Ma, the doctor just said I have a mass in my chest and walked out to call my private doctor. The nurse said I can’t leave. I am scared.”
My folks who lived about 45 min away from the hospital got there in about 20 min and then everything started to change. My life began to enter a new phase, but what? We didn’t know anything yet.
The only thing we learned once we were all together was that 9 months earlier this mass was 3 times smaller, but visible and in my chart. The doctor had simply neglected to tell me. Now it had grown to a softball size mass.
I was admitted for more scans and assigned a cardiologist. Instinct aside, all I knew was that my life was about to change forever…again.
To Be Continued in Part 2 – Coming Soon!
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