It started here on the beach. Well, I suppose it started many months before but the beach is where it became real.
A few weeks before, I went to the doctor simply because I was vomiting and had an earache. The nurse took my temperature and checked my blood pressure. "Does your chest feel bad?" she asked. "No." Soon after the Doctor came in, checked my blood pressure at least 5 more times and said calmly, "you are at very high risk for having a heart attack or stroke right now." What?! No, he must have the wrong room, a broken machine or something. He didn't. It wasn't. "You don't have high blood pressure," he explained, "we believe it is happening because of something else. We just don't know what."
Not exactly what I was expecting.
So, I began taking a medication to slow my heart rate and was on a daily check in with the nurse. It might be more appropriate to say that the medicine began taking me. I was exhausted... beyond exhausted. I would describe it as barely functioning. All of my work came to a halt. A week later, I was lying in bed awake and suddenly there were fish... swimming over my bed...in a uhh...waterfall. "Greg!" I tapped him awake. "What?" he asked. "Do you think hallucinations are a side effect of my medicine?" He woke fully and grabbed my shaking hand and calmed me to sleep.
"Mrs. Smith, I can promise you I am 99% certain that your medicine is not causing any hallucinations. Let's switch it just in case."
I began the new medicine and the hallucinations did not stop. Back to the doctor I went for a series of tests. Negative. "Let's order an MRI," he said.
July 3, I was on the beach celebrating my best friend Kayla's 30th birthday when the phone rang, "Mrs. Smith, we found a mass in your brain." I mumbled something through my tears and hung up the phone.
Monday morning I was back at the doctor for another MRI and had an appointment set up with a neuro surgeon. Of course, I had to wait an entire month to wait for my appointment. But man we were ready! We had lists of symptoms, we had lists of questions, we had lists for our lists. The doctor walked in and promptly said, "I'm not doing this surgery. It's too life threatening and I don't think its causing any problems." We didn't even get to question number 2 on our first list. I felt deflated. The worst case scenario for me was that I would have to live with the head pain and the hallucinations; would they get worse or more frequent? I felt lost. I wasn't hobbling around with a bandage or markable injury and for some people that meant my problem wasn't real or was easy to ignore. I was struggling.
Then another neurologist, more tests, more drugs, and an EEG bring us here. The growth in my brain has been dismissed and ruled out. I take a total of 11 pills a day which deliver a high enough level of sedation that I'm not in much pain but just enough that I feel it's hard to get by. Today, I received a phone call saying that my EEG was abnormal ...as were my blood tests. So, now onward march to a Rheumatologists. Lupus is atop their list.
What has all of this taught me? It's taught me that as strong as I think I might be, I need to learn to stop, listen to my body, and give it rest. That I need to stop trying to prove that I'm not sick and accept that I am. The people around me have gotten me through this and I want to say thank you to all of you who have sent love and your own stories of struggle. I can tell you it's been damn near miserable waiting for doctors or any sort of answer at all so your camaraderie has been crucial in my day to day. My entire life has been on hold and I'm not used to that. Hell, I'm supposed to be in Oregon right now hiking the Timberline trail. As my body breaks so has my heart while taking a back seat to life going by. I have a rambunctious 4 yr old son and on some days can muster just enough strength to play cars with him or color. The last thing I want is him to have memories of me being sick. So I grit thru the the pain and exhaustion and rally as much as I can. And it's strange...this whole time I just keep thinking, "If I can just get to the mountains everything will be alright."
"Go outside, somewhere where [you] can be quite alone with the heavens and nature. Because only then does one feel that all is as it should be, amidst the simple beauty of nature. As longs as this exists, and it certainly always will, I know that then there will always be comfort for every sorrow, whatever the circumstances may be. And I firmly believe that nature brings solace in all troubles.”
To be continued....