....changing meds, part deux

Sorry, I've been gone awhile. I would say I've been sleeping nearly 65% of the time since I last posted. I weaned down the Fentanyl and started the replacement oral drug one week ago. The worst side effect of this process is sleeping. Actually, I don't mind this side effect at all as long as it doesn't last! But seriously, I am beginning to sleep less. And, I've done some fun stuff on the few days before I make my next dosage taper. Now that's ALL behind me and I just have to see how my body adjusts.

My disease is progressing. I am retaining fluid and it's become quite noticeable. I woke up one morning with lines on my arms from where my PJ's cuff was and they were still visible at the end of the day! This also happens with my face and I look sorta dorky with deep lines that last all day, but oh well. I'm not a vain person so whatever.

I think back to this journey which began 6-1/2 years ago and can't believe where I am. First, that I'm alive! Second, how much I've gone through but still feel happy and mostly how much I have grown as a person, mostly in spiritual ways. I guess when you have 6 years to think about it, you do just that. I am currently reading a book called Lectio Divina by Christine Valters Paintner. I think it's a must read for anyone looking for deep spiritual growth. Lectio Divina is a Benedictine practice of very specific prayer - a discipline that is best described by your life is living a prayer. It could be applied to a person of any faith or denomination, or to the agnostic. I don't know if it's age or my situation (or both) that have also caused me to turn inward. I have become much more quiet - needing the quiet in my life, and reaching out to those who bring positive things to my life. All lessons I'd wish I'd learned years ago.

So I will leave you with a passage from the book, written by a teacher:
Do I posses the
tongue of a teacher?
One who feeds others
with a word
with open ears
and an open heart?
Do not turn away
this is your life
your sacred work
your sacred work.

How about you, me? I am more than Hepatitis C. What is my sacred work?

14 days = 2 weeks

2 weeks ago today, I began an intentionally difficult journey. I decided to go off the Fentanyl (opiod pain killer) patch. I was getting tolerant of the 25 mcg./hour and it was time to boost my dosage. I did not wish to get into the trap of needing more and more pain medication and increasing my dose over time. I actually read about a woman who used a 100 mcg./hr patch - but she needed to use 14 patches at a time! I did not wish to become that person. I am not judging what other people need to do - I respect other people's choices, but I need to do what's best for myself.

So, under Doctor's supervision, I quit - cold turkey. I am very blessed that I don't have a propensity toward addiction, but I knew it would be difficult. Many people are unable to do it. So...2 weeks ago I tore off that patch. Whoa! Within 12 hours, I was drenched in sweat, everything hurt, and I could not even think of food without throwing up. This part lasted 72-hours, and what happened next was that I felt like I had a VERY BAD flu. But every day, I felt a little better....and then, I really did get the flu just as I was coming out of the physical dependence on Fentanyl. I got a sore throat, fever, cough, GI symptoms, everything. I am just now getting over that and then BAM! I got my period (sorry if this is TMI) which I am shocked about since I'm only getting them every 4-5 months. And it's a doozy, so there you go. My last 14 days.

And still trying to be positive and focusing on all the fun things I'm going to do when this is OVER!

A breakthrough in my disease

I just realized how long it's been since my last post. The holidays are so busy and crazy with 4 grown kids! I managed to have a nice holiday season and I hope your holidays were enjoyable.

I experienced a huge breakthrough in my HCV - it may have taken 6 years, but it's huge. I became ill right after Thanksgiving and for the first time, I could tell that I had a virus - intestinal flu to be exact - and it was not a flare-up of my HCV. I have never been able to tell the difference before but I've really worked on listening to my body and I finally got it. You might be thinking well, duh Sue. That's no big deal." But when I get sick, I also get fearful that I am having a flare up and I may not get better. This time...by practicing the skill of listening to my body...I knew with 100% certainty that it was another virus and that I would get better. And I did after about 10 days! That's HUGE!

I also saw the liver specialist (I see him yearly) and my CT scan showed minimal changes from one year ago. He was astounded that my disease has not progressed much. He felt it was due to my meticulous attention to diet, exercise and overall help (which includes listening to my body).

I've also been working on getting off medications. Before HCV, I didn't take any medications whatsoever. Now I am on about 5 that I take regularly. I'm proud to say I have gotten of 2 of my meds completely. The most difficult one is coming up in late January, but I am resolved to do it. I am in favor of taking medications rather than suffering, yet I hate to take something I really don't need.

Happy New Year to all! I wish you peace....Sue

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.