Today is the best I have felt in awhile. It’s one of those realizations where you don’t know how bad you were feeling until you start to feel good kind of realization.  When asked how I was doing, I simply said, “today is a good day.”  I actually worked six hours today and was not too tired at the end of the day and for once I didn’t need to take a nap after taking a shower.  Interestingly enough, the fatigue has been a fun symptom – one minute I am alert and ready to go, the next I can fall asleep at a moment’s notice.

I am still a little scared. What will my next bout of symtoms look like? I can easily see myself being dismissive of them. What is that fine line of recognizing its just a bit of a twinge or knowing that its the start of another episode?  Additionally, I am a leo, who also happens to be a high achiever. High achievers need to be measured and my measuring stick is my job. I identify with it, I love being part of the backbone, the consistency…what happens when I don’t feel like I can be that?  In the midst of my recent craziness, I was still checking and responding to emails – even if it meant typing with one finger and closing one eye in order to see the screen. I didn’t want to be seen as not pulling my weight. I shake my head now thinking about how I even paired an infusion appointment with a delivery to our mailhouse so our organization stayed on track and no one had to go out of their way– who does that? Me, apparently.

Alot of people have been shocked by the initial diagnosis…none more than me…but even with all the conflicting information out there, it seems like one consistent thing to keep the symptoms at bay is good nutrition. There are several things recommended to avoid. Of specific mention are white sugar, refined flours and saturated fats–(sigh)– the best desserts are made with all of those! Earlier this year, I starting to eat “cleaner” so some of it isn’t that much of a change for me but realizing that every bite means I am either feeding the disease or fighting it gives me a bit of a new perspective. I try not to think of all the days that lie ahead but rather just focus on the one that is in front of me. 

Tomorrow I have a video conference call with our former Arizona nutritionist. M met her during one of his physical therapy appointments and she used to come to our house. The reality for us was that trying to save money where we could meant taking advantage of a program at our local food bank. While we would come home with a lot of food most of it was bakery items, canned meats, sugary drinks, and lots of pasta noodles. If you were to look in our pantry at the time, you would have found plenty of refined flour products, lots of sugar, and plenty of things highly processed…but things that were just pennies on the dollar. We once told her during a home visit that eating healthy was expensive and she remarked, “do you know how expensive a heart attack is?” Ha! Be it known that I have never used that excuse again.   

I am just going to have to make myself pause and remember that I am the only one responsible for me and normal will no longer be normal.