The positives

I just realized what a downer that last post was, but it reflects the day-to-day challenges I face. Now I plan to refocus on the positives.

As my spouse and I were talking, we agreed that throughout this journey I've managed to be me. Even when I am at my worst, my spouse says he can still see me shine through the pain and suffering. I've also learned important lessons. All my life has been spent caring for others; not only as a professional nurse, but also as a wife, mother, daughter, sister and friend. Although difficult, I've made the transition which allows me to feel okay about not contributing as I have in the past.I've had to adjust my focus on caring for others to taking care of myself. I take pleasure in the smaller things in life; a college care package sent to a niece; a card sent to let someone know I'm thinking about them and helping each of my children in small, yet meaningful ways. This year I asked each of them what they wanted to do for Christmas. Each replied independently of one another: "just spend time together as a family." They don't want gifts or lavish treats - they simply all want to stay a few days at home in their old bedrooms and to"hang out." We are blessed to have 4 wonderful, grown children who are good friends with each other and we all get along well. We have fun together - watching movies that are family favorites, playing games, cooking together and bantering around the way families do. I get calls and texts from my kids at least 3 times a week from each and they lead very busy lives. There's a whole lot of love surrounding us and I don't take that for granted.

My spouse has had to make the most adjustments and we talked a lot about that too. He is happy to take on additional responsibilities to help. He is happy to sit with me, even if we are both simply reading or talking. His job is very demanding and he works out of town 2-3 days a week, which bothers him but it can't be changed. The company he works for is very understanding of his situation and allows a great deal of flexibility - he started with the company when he graduated college in 1978 and it's the only place he's ever worked so he's earned that privilege. They treat him well, as they should. Loyalty is one of his best traits.

And...I've found new ways of having joy in my life. I still have my #1 favorite: nature. I can't do as much as I used to, but I can take short hikes and get out into the woods. I can still do a little gardening, baking and a lot of reading. I adore my 2 dogs and don't know what I'd do without them. I've set goals: to continue with my consulting business at it's current pace, I'm writing a book about chronic illness from the perspective of a nurse and patient and I am giving serious thought to entering ArtPrize next year. I also have found a church home and have a few wonderful friends who are like sisters.

And...one of the most important: I still have good periods of time. I no longer have entire good days, but every once in awhile I have a few good hours and it's truly a gift.

Lousy

There's no other way to say it: I've been feeling lousy. Mornings, which used to be my "good" time have become very difficult. I can't get myself going until 10 or so. Some days I never get myself going - those are the days in bed. My spouse and I were talking last night - about the last 2 years at this time, which we remember well. Two years ago I had just come off treatment and didn't yet know it hadn't worked and I was feeling pretty well. Our daughter was crowned homecoming queen; we took a trip up north to see the fall colors and I recall feeling especially well. I was certain I had been cured. I felt as well as I had since prior to my diagnosis in early 2006.

Last year at this time, I was teaching 2 university classes. I'll admit, it was a bit much and I struggled to do it - not wanting to give that part of me up. I was stubborn and wanted to continue nursing so I fought to keep my profession. But I had a mix of good and bad days and an occasional day in bed. I only canceled class once due to illness. Work wiped me out and on my days off, I usually just relaxed.

Flash forward to now. I spend 3-4 days in bed a week. I can't even imagine working on a regular basis. I do a bit of consulting....all done from home, and I can do that quite easily. I don't even care if I work as a nurse anymore. My ability to go to any certain event is less than 50% and I'm so accustomed to disappointment it seems as normal as a root canal. I cancel appointments on a regular basis. I struggle with overwhelming fatigue, pain, loss of appetite, vomiting, constant headache and difficulty sleeping.

As we had this discussion it made me a bit fearful, no that's not the right word. It made me sad for what lies ahead. It isn't going to get better. Not ever. The new protease inhibitor is not recommended for me (genotype 3) as it does not work on my type. There is very little hope.
And with all this I have to push forward and try to stay positive, all the while knowing I am slowly dying and I will never have my life back. Not ever; things will just get slowly worse. It's a big pill to swallow.