Most days are good, but not today

When I have a really good day I tend to make the most of it. Yesterday was one of those days - I ran a bunch of errands and was on the go most of the day.

And guess what? Today I am paying the price. I am exhausted, in pain and feel lousy. But I am not going to change anything. When I feel well, I still need to take advantage and do as much as I can EVEN if it means being down for the count the next day. I cannot and will not take it easy on a good day. I feel as though I MUST do as much as possible when I can. Live life to the fullest when I am able.

So, I am still in my jammies and taking it real easy. A good book, a cup of coffee and time with my spouse are all I need today. Oh, and can't forget my dogs! My life would be so lonely without them. I always think about what people are missing in not having pets. One of our dogs in particular is very intuitive when it comes to my health. She's always by my side when I'm not doing so hot.

But my mantra stands: Doing my very best, every day.

November is here!

Following a rough Sept/October and after a trial of 4 different medications, I think we finally got it right! I am feeling so much better -sleeping GREAT, able to do more things and very thankful for a boost of energy just before the holiday season begins. I know I'm ready to tackle a big Thanksgiving dinner and my kids will all be home. I love to cook and cooking for my family is simply the best. I can't wait!

Today I realized (duh) that I don't have boundless energy. In my mind I always do, but my body doesn't cooperate. I washed & waxed my car; cleaned the inside as well. It is such a gorgeous day I decided to rake some leaves. We have 3 major yard segments, and my goal was to complete one of them. I got to raking and ran out of steam - became completely pooped out with only half done. I know when I've reached my limit; I simply cannot go beyond a certain point or I will spend the next day paying for over-doing. So I stopped. And I don't feel sorry for myself; instead, I am grateful for what I WAS able to do.

And...while many days are quiet - nary a phone call, I can say I love the solitude. I turn inward, to God, and finding beauty. I am hand-making a bunch of Christmas gifts this year and it's been a fun, creative process. I never run out of books to read or things to do. I have to make up for all the time I've been so sick!

I am hoping that the beginning of November marks a turning point. Two major milestones in my grieving process occurred in October of last year and I grieved them appropriately this year. With that behind me and looking forward to what's ahead - I think the end of the year is going to end just right.

A love letter to my friends

Hello, I've been gone for awhile. I've been working hard to get better and regain the strength I lost being so sick. It turned out I contracted a virulent virus and it kicked my immune system in the behind. Thanks for all your prayers, cards and calls. The saying is true: the little things mean a lot. I am crawling out and gaining strength each day. And....I have the best husband on earth! He is my best friend and my rock. We are still madly in love and are approaching our 30th anniversary. I appreciate him so much and am so glad God brought him to me. He's one in a million.

Another blogger I follow posted a wonderful blog entitled "A love letter to my friends." I hope you'll take some time to head over there and read this blog entry. It says it all. Thanks Shari!
http://notesfromthecouch.com/2011/10/19/love-letter-to-my-friends/

Not getting better

My spouse took vacation this week - it's peak season for fall colors and we wanted to see them. We spent 4 days up north but I was very ill and not getting better, so we returned (the colors WERE spectacular!). My doctor is working on getting me evaluated at the University of Michigan Medical Center, which first must be approved by my insurance. Once approved, I will go there for a thorough evaluation and see if something is being missed or perhaps I am ready to get on the transplant list.

I cannot tell you how sick I am. Worse than on chemo. So, I'm sorry I haven't been responsive to your cards or emails. I get tired just from talking.

I will keep you posted.

The decline....

I've been hoping that this current struggle has been a virus, menopause, or a combination of the two but I can't seem to shake it. This past weekend was my nephew's wedding; he is very special to me and I did not want to miss out! I rested and rested in preparation and when the day came and my ENTIRE family was here, I was able to go....but not without more medications than usual. The reception was held under an outdoor tent and it was quite cool; within a couple of hours, I was chilled to the bone. I didn't think the additional stress on my body was good, so I chose to come home and rest while everyone else stayed and enjoyed the festivities. Instead of feeling badly, I was truly grateful I got to go and experience as much as I did.

But I am not getting better by any stretch of the imagination. My wonderful spouse took the day off and went to the doctor with me to get some answers this morning. While I don't have them all, I now know this is NOT a temporary change in condition that will get better. My liver is showing signs of more disease (development of ascites to be specific) and my symptoms fall into the category of disease progression. The doctor increased my pain medication and is sending me to a specialist who will most likely do a liver biopsy and see how much closer I am to needing a transplant.

The weekend was bittersweet; realizing it's unlikely I will live to see my kids marry and that my husband will grow old without me are very difficult realities. I still find myself asking, "is this really happening?" as it seems so surreal. There is no doubt I have a difficult path ahead and it's not likely to ever get easier. I pray that God will keep me strong.

gratitude and fear

I thought I was getting better .....just a little each day, but then today: BAM! and I wake up terribly ill. The fear: I will never feel better. But I'm hoping and praying and so are lots of folks.

SO MANY people have pulled together to help me through the last few weeks. I've gotten cards, visits, calls, flowers, PJ's, meals, and many prayers. I can feel the love and I am so filled with gratitude, it's hard to express. I don't know what I did to deserve it. I am just on my knees.

I just learned of a doctor I worked with in the 1980's. A brilliant man who ended up as Chief of Staff at a major medical institution. He was just diagnosed with Hepatitis C, and I would guess he got it the same way I did; occupational exposure. Another sad story. His has advanced to liver cancer and he awaits a transplant.

So thanks everyone. And I'm keeping hope alive. Not giving up. I'm simply not accustomed to asking for help and/or getting help. But I am very humbled. To the point of tears.

I've been so sick....

Still not feeling better; still not seeing light at the end of this tunnel. Then today, courtesy my friend Ms. Terri St. Cloud over at Bone Sigh Arts, I read this blog. And weep. I am not alone and God is with me.

Thanks, Ter. And thanks to the woman who posted this blog today.
My sign would say:

I am sick and my disease will kill me and I'll never grow old with my spouse or meet my grandkids and I'll never feel good again. Please be gentle with me. Please don't forget me. I am still alive.

You MUST read this:
http://bravegirlsclub.com/archives/2151