Getting out, getting weird

I rarely go out. My major outings are to church (about twice a month at most) and the grocery store 3 blocks away. I just don't have the energy although I keep busy at home.

Before my illness I was Ms. Involved in the Community. I was the PTA president, was the "team mom" for football (7years) and basketball (5 years). I attended every sporting event, away and at home for all 4 kids. I may have missed a couple due to scheduling conflicts or illness, but I don't remember missing much. I went to every parent-teacher conference for all 4 kids, and volunteered regularly in their classrooms and for class parties or field trips. I was on two non-profit agency boards - secretary to each, and ran a 24-hour sexual assault program with a staff of 107 people. I feel tired just writing that, and I'm not trying to brag - it's simply a fact of how I lived my life - with gusto. And I loved every minute. I devoted my life to my family and things that really mattered to me.

Now....trying to find things I am able to do is a challenge, but I've managed to do so as best I can. I joined a philanthropic group of women who raise funds for local 501(c)3 organizations. All that's involved is attendance at a 1 hour meeting four times a year. And it just so happens the meeting is within walking distance of my house. So, I went to my first meeting last night.

Ugh.

I saw many people who I thought were "friends" - not great talk-every-day type of friends, but women I liked and spent a great deal of time with over the years at sporting events and school functions. Many I've known for 25 years or more. Last night was certainly an eye opening experience for me. I'd guess that 85% of the women I knew completely ignored me, sometimes blatantly. I waved at one I hadn't seen in a long time and she looked away and didn't wave back. I said "hi" to one who shoved a piece of paper at me and I asked "what is this?" and she said "its a ballot" and walked away. There were a few who hugged me and said they were happy to see me but barely recognized me because of the weight loss (almost 70 lbs. since July 2009) and commented on how much my daughter looks like me now that I am her size.

Today I talked to a closer friend who lost her son in a boating accident in 2009. She experiences the same thing when she enters a room. I think she is wise when she says that she and I represent the worst fears in people; to lose your health and die or to lose a child and folks simply don't know what to say or do. We make them uncomfortable.

This is so foreign to me; I've been a nurse since 1979 and I've been the one to tell many families that their loved one has died and have sat with them for hours providing comfort. I've taken care of gravely ill patients, especially in the ICU and I was trained in how to act and what to say so it's natural for me. If I saw me walking through the door, I'd be one of the first ones to run over and provide support. I have to remind myself that not everyone is like that; in fact most people are not. I hope those reading this post will think about this and how to approach people who make us uncomfortable due to illness, tragedy or deformity and think about how those people feel when you turn away; when you act as if you don't see them and leave them feeling invisible - as if they don't matter. Because they do matter and they have lessons to teach you.

......my book

Since I haven't heard anything from the publisher regarding publication of my book on Invisible Chronic Illness (which I sent in early November), I decided to give them a call. After reading an article in Newsweek about the grim outlook for books lately it did make me wonder. For the first time ever, e-books, such as those for Kindle, Nook, etc. are outselling hard copies. Borders - our nation's second largest bookstore has filed for bankruptcy, and small independent bookstore owners are dropping like flies.

When I spoke with the man on the phone, he told me that with today's market my topic, although "very important and interesting" was not likely to bring sales to the company. Since they publish only books (not e-books), my manuscript was declined. He apologized for not getting back to me sooner. I'm bummed. I think the topic of invisible chronic illness is very important! Society views people differently when they have an obvious illness or disability than a person such as myself who looks fairly healthy.

Where to go now...I'm not sure. Any ideas anyone?

I need to hear from you on the topic of stigma

Well, I finally got my computer fixed and returned working in tip-top shape. The whole concept of stigma has been rolling around in my head for awhile now. Since I've been diagnosed with Hep C, I've lost a few "friends" and there are family members who are not so compassionate. I can't help but wonder if I had another terminal disease (and not all Hep C patients are terminal - many go into remission but not me) such as cancer or a brain tumor or cardiac problems or lung disease, would they treat me the same? Am I treated differently than those with more "acceptable" illnesses? My gut feeling is yes, that I would have more understanding and more people would reach out but I don't know since I've never suffered any of the other diseases mentioned. Are there any of you out there who has a chronic, terminal condition or know of someone with the experience of another chronic, terminal illnesses that would allow you to make a comparison? I just don't have an answer.

It's about time.....

Hepatitis C is finally getting some traction in the media with the CDC and NIH showing some interest. Here's a link to a great article in Huffington Post:

http://www.huffingtonpost.com/2011/01/18/hepatitis-c-new-hope-for-_n_810204.html

Please understand I am aware of the new drugs and they would not work for me due to the fact I have a rare subtype. And, the Detroit Hospital they mention is participating in clinical trials, but none would be appropriate fore me for the same reason. So, while this article gives hope to many of you - and I am truly happy about this, there is little hope for anything new in the future for me.

Beautiful thoughts on suffering and spirituality

I am not Catholic, but I have found great wisdom in the writings of the saints, so I often find myself reading things written by those of Catholic persuasion.
A friend sent this to me and it is written by a Catholic priest,

Fr. Antonin Gilbert Sertillanges, OP

"Man is an apprentice, pain is his master, no one knows himself until he has suffered." These words inspire admiration; but how many are prepared to accept the consequences? So laborious an apprenticeship would only be undertaken by one really determined to become a master craftsman, fully appreciative of self-knowledge as a sovereign good. But that, too, must first be learned.

Without sorrow one might perhaps be happy, but one would not be aware of it. What would such happiness amount to?

It does not suffice to endure suffering in order to acquire experience. This demands reflection about oneself and the essential conditions of life. With still greater reason, the utilization of experience is not thus acquired; it requires the tranquilizing of the soul in God: it takes love, without which suffering embitters and confuses the soul instead of enlightening it.

Suffering is an extreme remedy which either cures the ill or makes it worse, which strengthens or kills. Both the physician's prescription and his attendance are necessary. 'Unhappy is he,' says St. Bernard, 'who carries the cross of Jesus but who is not with Jesus.'...

We console a person by sympathizing with his grief; but especially by showing him its beauty.

As a nurse, I've devoted my life to the care of those who are suffering. And...at my age I've seen suffering in many forms, even my own before I became ill. In every instance, suffering forces introspection and thus, inward spiritual reflection. Prior to having Hep C, I would have said I'd not take back any of the suffering in my life as those were the experiences which helped me grow as a person in many ways, but most apparent is a deepening spiritual connection I felt with each instance, even at times, the suffering of others. I can't honestly say I am happy to have contracted Hepatitis C; it has caused immense growth and forces me to face all of my shortcomings. One can suffer well, as the writer indicated. But my current situation is tough. I don't want to suffer anymore. I don't want to die. I've had to think I may have to give up the dreams I had of growing old; time with my spouse, weddings, knowing my grandchildren. As Fr. Sertillanges stated, I don't want to become the embittered one. I want to realize my full potential within the limitations of my illness.

Resolutions

I often wonder who makes New Year's resolutions. My feeling is that a "resolution" is an intimidating word, and often when we make one we find ourselves breaking the resolution in a short time ....then, feel like a failure. So I prefer to set yearly goals instead and I make sure to make them positive, achievable and something that benefits those I love. Plus, I don't make dozens - I keep it to 6 or less and they are usually rather big ideas.

I'm not sure how many people read the "Spoon Theory" post (scroll down) written by a woman suffering from fibromyalgia. The same principles apply to those with Hep C and many chronic illnesses. To sum it up, when you have a chronic illness, you wake up each morning with a limited amount of energy (gas) to accomplish your daily goals. With each activity, you are using up more gas and if you over-do, you'll find yourself on empty by mid-day. Conversely, if you pace yourself you may find yourself able to reach your goals for the day.

But there's a big catch: We cannot control everything that happens in a day and an event can occur that takes a LOT of our daily allotment of gas all at once. My daughter was involved in a horrible accident last week on her way back to college and we were up most of the night. She was 100% unharmed which was unbelievable. The driver was also not hurt, but the passenger in the back seat had glass shards in her face and was taken to the hospital. We thank God that all three girls were okay. These unforeseen things can understandably cause you to be empty at the beginning of the day!

So, getting back to resolutions (goals is the term I use) I'm trying to pace myself better so that I have energy for my spouse in particular, but also to keep more balance. The problem is that we can only control so much and another of my goals is to let things slide off my back. Negative emotional energy can drain me for up to 2 days. I can only control myself. And when you have an illness, it takes practice to not allow negativity or things people say to you zap your energy. This happened to me yesterday and ....

BAM!

What could have been a horribly negative experience, zapping my energy to zero I was able to keep my goal and take care of myself. The positive feeling I got from weathering what might have been an awful thing actually energized me and I slept well, waking up with a full tank.

I hope your tank is full too. Love yourself and don't let people's negativity get to you. That's the world we live in and take the high road, assess yourself and use positive self-talk and spend time doing things you love. That's my plan for today. God bless all of you who are out there with Hep C and suffering. I hope you find this blog helpful and we can share our journey together.

Bone Pain

Before I get into my topic, I want you to scroll down the blog to the Spoon Theory blog and read the comments by PSPam. Wow! Finally, someone who really understands how Hep C effects your life!

Ok, to my subject for today. Many people on chemotherapy struggle with maintaining blood counts, as chemo destroys all cells - good & bad. Often, pretty much every element of a complete blood count is low - a condition called "pancytopenia." I experienced pancytopenia during the last 3 months of treatment in 2008 and my biggest challenge was my neutrophil count. Neutrophils comprise the largest part of our white blood count which is responsible for our immune system. My neutrophil count was so bad that my doctor had to give me a drug (injection) called Neupogen, which is also needed by many cancer patients. Neupogen stimulates the bone marrow to make more blood cells as most blood cells are formed in the marrow, particularly in the large bones such as the leg bones and hip bones. Many who receive this drug experience a great deal of bone pain. I have a friend who was on chemo for breast cancer and she remembers Neupogen as having the worst side effects than any other chemo drug she took. But it doesn't affect everyone the same way and I had seven injections - a little bone pain, but I felt better. Having a dangerously low neutrophil count makes a person feel very very sick and I was thankful for feeling a bit better.

Another blood component made in bone marrow are platelets (also called thrombocytes). Platelets are one of the factors in blood clotting. A normal platelet count is 200,000 - 400,000. Mine has been running around 90,000 which is typical of a person with my stage of liver disease. Therefore, my body has been trying like crazy to make more platelets and I've experienced a great deal of bone pain lately - much more than when I took Neupogen. My pain is located exclusively in my legs and it's a very difficult pain to describe. It's a deep, achy tired feeling; almost as if your bones were badly bruised.

Honestly, this dying slowly and suffering is for the birds. I have very little hope that anything will change in the next 5 years; I've been dealing with this for 5 years already.
Be grateful, be very very grateful for your health - if you have it.