Sometimes I get my hopes up for new doctors and new appointments. I am hopeful that a fresh set of eyes will bring a new perspective, new hope and although I try not to let myself, I feel a bit of anticipation at receiving real answers.
I had been highly anticipating going to a new neurologist to see his perspective on all of the issues I am facing. At least hoping he could shed some light on the seizures, the autoimmune disorder or the multiple neuropathy issues that are increasingly getting worse.
As the doctor personally came out to the waiting room to get me and I was seated across a desk from this acclaimed neurologist, hope swelled within. I felt he was going to point me in the right direction. I had faithfully done my research on this doctor. Going into a new doctor takes as much preparation and work as checking out a new company prior to an interview. I knew he wanted top three issues first, then a brief timeline of when symptoms began, how they progressed and any events that could have triggered the symptoms. I was ready. I handed him my seven pages of notes complete with medications, ordered by whom, dates, side effects and any progress noted. I listed symptoms in order of them complicating my life. I had a list from Thomas describing my seizures and passing out events in detail, head position, time unconscious, and how eyes roll when I am headed for unconsciousness. I had listed all confirmed diagnosis followed by possible diagnosis and why they were being considered. The next sheet contained a complete list of every test ran, with dates and locations. The last is a timeline, from birth of any significant illnesses, treatments, miscarriages, surgeries and onset of symptoms. I was prepared.
As I sat down, I gave my three minute synopsis. Top complaints, symptoms, onset, confirmed diagnosis and current lack of understanding within the medical field. The doctor began firing questions back and with each the answers came clearly and quickly. I have become extremely proficient in telling the short version, especially to doctors.
After five minutes in and answering his questions and confirming his summary, he apologized. I must have glanced at him funny. He said he would just "cut to the chase". He continued with, "there is no reason to send you on a wild goose chase. Running more tests, poking you, trying to figure this out. I don't know how to put this gently but..." He paused as he took a deep breath before continuing. "Your days are numbered. Your time left is short. I've seen too many people spend their last days searching for answers when time is better spent in the arms of their loved ones." Again, he stared into my eyes, I believe searching to see how much farther he should take this conversation and sum up how I was handling this news before continuing, "People do NOT live with what you have. Your illness isn't if it will take your life but when" a longer pause, "this is way beyond my skill set. This is beyond almost anyone I know. If Mayo cannot figure it out, I just don't know where to send you. I'm sorry."
I assured him that I was different and have survived against all odds, that a higher source, God, was sustaining my life while answers were trying to be found. I understood the critical nature of my health but also that I know some way, some how, I will find answers. I pleaded for him to give it a shot, just see if he looked a little deeper and had any feelings or ideas to try. He went on to express that with doctors, most things are proven. He expressed his condolences and told me he would wave the fee for the appointment. He wished me the best and again reminded me to not spend all my time searching and spend time with those I love.
As I walked out of the appointment, my mother in law looked at her watch. Shocked that my hour appointment ended in less than ten minutes.
I called Thomas and relayed the events and the words expressed by this new specialists that was supposed to have all the answers. Usually in cases like this I feel a major let down. I feel hopeless, if only for a little while. However, today, I felt hope. I was as sure of my feelings as I was of the words that had just been spoken by the doctor.
The day went on and I pondered his words. I pleaded with my Savior for direction, understanding and guidance, trying to find any clues within the appointment that could lead me to another source, another doctor, another direction or enlighten me at all regarding the words spoken. I just knew this appointment would lead to answers and felt so reassured that this was the path.
Over the next couple of days, I continued to ponder the words spoken. I prayed for guidance, understanding and pleaded I would understand what my next step was and where I should concentrate my next efforts. That reassuring peace from my Savior never left, although I wasn't sure of my next step, I knew He was still by my side.
A couple of days later while pondering and praying for answers, a feeling came over me. Doctors practice what they have been taught. Doctors piece together symptoms and complete a puzzle to a diagnosis. Once a diagnosis is made, doctors have an idea of how to fix it because of their practice and training. If I am the only living patient with this diagnosis or disease, then treatment isn't known. Doctors don't know how to fix what hasn't been discovered. I felt peace as my understanding was enlightened by the Spirit. Doctors practice what researchers have figured out. Hence the need for breast cancer research, more research conducted on autism and all the brilliant researches that take the unknown and find a cure.
Like a light bulb flipped on, the path was clear for the first time in a long while. Doctors practice medicine. Researchers are the ones that discover new cures and new treatments. I have been going about this wrong. I've been seeking help by those that treat what has already been figure out. I need to find a researcher willing to take on a new project.....me!
My new plan....find a research phd that can help me to figure this out. I need to plead with one to not only help me, but possibly, while helping me find a cure, many countless other lives are spared. So my quest continues but down an entirely new path.
I'm grateful for a loving Savior that assures me that answers will be found. Even in unlikely places when doctors are telling you that your days are numbered and to give up. And while I am searching for a research doctor, I will continue to do what I have been...loving and spending time when those beloved family members and friends that I cherish. It's good advice to express love and treasure relationships, no matter the situation.