It has taken some time for me to work up the energy for this post, so I apologize for the delay.
The past few weeks have been hard, busy, and full of ups and (mostly) downs. We finally got to meet with the specialist at Swedish Medical Center in Seattle. Since then, I have experienced another MRI, a barium swallow study, an EMG (electromyogram), a pulmonary function test, and more blood work. Coming up in the next couple of weeks are a specialized brain scan (DatScan), sleep study, wheelchair consultation, meeting with another specialist, and follow up with a pulmonary specialist. Do I feel like a science experiment? Yes. Are we getting answers? Yes.
The most recent diagnosis is ALS (Lou Gehrig's disease)-- total surprise. My symptoms have traveled a unique path (like most patients), and it made it difficult to diagnose. Two neurologists are in agreement, and I meet with an ALS specialist in June for a "final" 3rd opinion. Definitely not good news. During this same time period my symptoms have gotten progressively worse, and it is clear to me that we won't be reversing the direction of this journey. This isn't really something I can fight. At first it was hard not knowing what I was fighting. Now, it is hard to know that I really can't fight. Don't get me wrong--I am not "giving up"-- just understanding how to prioritize where I use my energy.
I am hoping for as much time as I can get -- so much to do. If only my energy and physical abilities could match the needs! I wasted too many days feeling sorry for myself -- yes, I was having a "pity party" (although I was enjoying lots of old black and white movies from the '30s and '40s). I will still have some of those days, but I want to have more days of enjoying life. I just have to enjoy it differently than I used to.
With lots of downtime, I have had lots of thinking time. I have started a mental list of all of the great adventures I have had in my life -- it even surprises me! I will save that for another post, but if you haven't taken the time to think about your life so far in those terms, try it. It definitely brings a smile to my face.
I have received the most wonderful notes, cards, emails, texts and visits from people in my life, too. I can't even put into words how powerful they have been, and how helpful they have been in helping me "keep my positive." Bill and I are learning to ask for help, accept help, and appreciate the love being shown to us. I don't ask "why", as it doesn't matter. Things happen to people everyday. It is just part of my journey. It is hardest for me to see and know how difficult this journey is for my husband, children and family.
Thank you for sharing the journey with me.
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