New Position

I'm off to a new hospital as part of a start-up team to prepare for opening day in November. This is a big change for me, I've been at my last position for over 25 years, the last 15-20 in the NICU. It was an extremely difficult decision to leave. In my opinion, this is one of the very best pharmacist positions in all of Southern Cal. I loved it. The people there are wonderful and as a team we delivered excellent care to our patients. Our role was integral  to care of the patients. However, what I am most proud of is the part my predecessor and mentor, Bob, and I had in the design and implementation of our pharmaceutical care system in the unit. A computer program system that made care safer, better and more efficient for the nurses, physicians and pharmacist.

So, then, why did I leave? First of all, I didn't know I was sick when I decided. The other reasons are complicated but, simply put, I felt the culture within the organization and management that would make staying on top very difficult. Unless I was willing to invest a lot of hours at home, staying on top would not happen. I didn't want to be a part of the decline. On the other side, I was also enticed at the opportunity to be involved in the start of a new hospital. To take a bare pharmacy to a fully functioning department would be challenging and fun. Also, the new director and the other transferring pharmacists and technicians were people that I have worked well with and respected. I was excited at the opportunity to work with these people. At the possibilities to create something special at Ontario.

We are now planning the start-up and this diagnosis is sitting in my mind like a big goose egg. For me, it puts a crimp on a lot of the planning now, because I no longer know what I'll be able to do in the future nor how long I'll be able to do it. This sucks, I was so looking forward to this. There was so much I wanted to accomplish......

Insidious Beginnings

It all started innocently enough. The first sign of muscle weakness came Oct/Nov 2009. I had difficulty clipping the fingernails on my right hand. Just that... my left thumb was a little weak. It was hard to squeeze the lever on the clipper hard enough to clip the nails. That was all, just my thumb. I thought nothing of it. Just that it was odd. Figured, I'll wait.... It will resolve.

Looking back, I realize now that there may have been other signs that something was wrong. I had cramps... LOTS and LOTS of muscle cramps not 1 or 2 but 5 to 10, sometimes more a day. They were in my legs, hands, ribs.. all over the place. After reading neurology texts about ALS, I now know that cramping is one symptom of ALS. I'm not sure when the cramping started but it must have started at least 6 month before the thumb weakness, probably early 2009 is my best guess.

I'm blown away that something so deadly can start so innocently. Disguised as a minor anomaly it begins it's insidous sequence of denervation and muscle wasting. I wonder when this started. What caused it? When did it become irreversible? It's unlikely that I'll get the answers here, but I want to know. I guess I will have to wait until I see Him.... I'll have to wait till then.

Status

I'm doing well... considering. My left arm - where the weakness first began - is very weak. I can't carry anything with that arm except for the lightest of items such as a cup of water or my kindle and even with that it's only for a few minutes. My right arm is okay, about 30% strength. Everything else is weaker also but not as much.
It's all relative and I've learned to live by a new standard. Considering what I'm facing in the future I'm ever so grateful that we can still live a fairly normal life.

How much longer will our lives remain "normal"? I don't know. Judging by the decline, which has been fairly constant, In a few months I don't think I will be able to use my left arm. Wheelchair is perhaps 3 - 6 months down the road... maybe more. Just an estimate, but you get the picture.

Sounds sad I guess but I'm still fine. Perhaps it really hasn't hit me yet. I'm really perplexed by this. I should be sad but I'm still happy and enjoying life. Life is good. No... not good but GOOD! This past weekend, Easter weekend, was very nice... I'll tell you about it later. 


One verse that came to mind when I first received that diagnosis:


Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go. Joshua 1:9

You know, It's true. He is with us. He gives us the strength and courage.

Praise God.

Easter

Thank you all for coming out to help with the Easter Breakfast! It was fantastic seeing so many coming out to help. The spirit in our church is truly incredible, to see how everyone came together to support such a worthy cause was very encouraging.

I apologize that I wasn't there more to help with the clean-up. I was scrambling to get my message done for service. Seigo, asked a few days before to share during Easter service. I was apprehensive because I'm a terrible writer and it takes me forever to organize my thoughts. I didn't have much time because of the Easter breakfast prep still to do but I trusted Seigo and felt God wanted me to speak so I agreed. I was up past 2am the night before trying to get something cohesive down and was scratching in last minute edits during service. But, God is good...I walked up with my rough draft full of scratches and notations. As I stepped up, He took over and calmed my spirit, organized my thoughts and allowed the words to flow and express what was in my heart - Thank you Lord. 

Okay, here goes nothing

Perhaps, this will work. I've thought about a blog for awhile to keep everyone abreast of how I'm doing. I didn't know if I could post enough to keep it worthwhile. I am a lousy writer. It takes me an hour to write a couple of paragraphs. But, there are so many caring individuals who have written, emailed, messaged and prayed for us. I am humbled. Athena - I'm starting this for you. Your message and suggestion is the final push to get me going. Wish me luck.