Some things are meant to be

It's a rainy, dreary Labor Day here in Michigan. I actually love rainy days and we've been treated to an occasional clap of thunder. It's been a bit of a sad weekend too, as one year ago our youngest daughter's very close friend's only sibling, a brother, was killed in a boating accident. He was 15 and he is lovingly missed. He was one of those young people that made an impact on our community in his too-short life. I'm thinking about you RJJ; I hope you are at peace.

This past week several events have taken place that could best be summed up by:
This was meant to be.
Sometimes things happen in life that bring two people together; bonded forever by the simplest of events and sometimes through tragedy. That's happened a lot to me since I've been fighting Hep C - I've met people I never would have met otherwise and I know the bonds are simply meant to be.

I'm about to do one of the most difficult things I've ever done in my life. It's far too personal to share on my blog (I am actually a very private person) but once it is done the consequences are irreversible. I have the support of my husband, family and my dearest friends. This decision has taken a toll on my body as well; I had blood work done last week and my platelet count is the lowest it has ever been - even lower then when I was on chemo. Stress and emotional upheaval certainly affect the body and when you have a chronic illness the link is unmistakable. Again, this decision is one of those things that are meant to be, of that I am certain.

We are leaving for a 3-week vacation to Santa Fe, New Mexico. I am very skilled at putting things behind me once I leave; it's a crucial skill for a nurse who observes horrendous things on a daily basis - you have to walk out of that hospital and shut out all the things you've just seen and go home to normalcy. It sounds much easier than it is but I believe it's a skill that is developed over time and I think I have it pretty well mastered. So I will be drawing upon that skill to enjoy myself with the best man I know for the next few weeks. Until then, Adios and may you have a peaceful September.

And.....may you experience some things that are simply meant to be.

A new inspiration

Well, I've finished reading yet another book about coping with chronic illness that left me feeling quite disappointed. Most books on the topic are either scholarly works written by people who treat those with chronic illness but understand little of how such illnesses can shatter a life. Other books, written by those who suffer from illness barely scratch the surface; they often have self-serving, ulterior motives for the book OR I find them sorely lacking in depth. I want to read something that goes deep. Real deep.

Realizing I've been in the nursing field for 34 years and having not only much experience as well as having a chronic disease got my wheels turning. I've had two manuscripts published in peer-reviewed journals, so I am not a novice in the field of writing and publication. But I'm also not an experienced or accomplished author. I spoke with an academic colleague who has published major works (mostly nursing textbooks), and asked her opinion about writing this type of book.he She wholeheartedly supported my idea and felt such a publication is sorely needed. I feel very inspired to write a comprehensive publication -not a textbook - but something that digs deeply into "hidden" chronic illness. Hepatitis C certainly fits that category. Being a paraplegic does not, and while paraplegia is a horrible condition most people recognize that the condition exists and treats the person differently than say, for example, I might be treated since I do not appear sick in the classical sense.

So...now I am inspired. I feel like I'm getting tugged on to do this; write a comprehensive book about hidden chronic illness that can serve health care professionals, persons with the disease AND their friends and families. It will require a lot of time and research but I think most can be done at home. I also have a couple of connections in the publishing world and I certainly have immense determination! So, guess what? Sue is writing a book. Not yet - I just have an outline and ideas put to paper at this point, but when I return from vacation I'm going to get started. If you have any ideas/insights to share, please do so. I also wish to interview people with other chronic hidden conditions to add real life stories and put faces to the disease and pay honor to the daily struggles some of us face. The tenacity and strength of the human spirit never ceases to amaze.
So....here I go again on a new adventure. I've never shied away from a challenge, and I am not a quitter so get ready to see what lies ahead. At this point my mind is swirlin' with ideas and I'm ready to dive in!

HIdden diseases

I've been reading quite a bit about what are termed " hidden diseases." These are things such as fibromyalgia, chronic fatigue syndrome, multiple sclerosis, and.....Hep C. A person with any hidden disease is not apparent to people in the world around them as would be someone who'd lost a leg or a person in a wheelchair due to paralysis. I've gotta be honest here - this really makes me mad. SUPER mad! I read an excerpt from a book about Hep C that says since our disease is invisible on the outside, patients with Hep C often feel their family and friends don't think of them as classically sick, such as in heart disease or cancer and so.....they are treated as if they are pretending to be ill. Does that ring a bell for you? It sure does for me. I've been outright accused of "faking" my illness! I don't know of anyone who would choose a days in bed or miss out on important events because they are faking. Well, maybe some people would but not this one. I'm too full of spunk and life.

This is my week for blood tests and guess what, they screwed it up. I drove myself yesterday morning for all the blood work (fasting) and the lab called me in the afternoon to say they'd made an error and the blood would have to be re-drawn. For some, while a bit frustrating, it would be no biggie. For me, it's huge - I have to drive about 1 hour round trip after not eating and hope that I'll feel well enough to make it both ways. Yesterday I made it partway home, became suddenly ill and had to stop and throw up. Then I sat in a parking lot for 10 minutes trying to collect myself to be safe on the road again. I drove home but probably should not have been driving at all - my ability to pay attention was hampered by severe pain and nausea. I made it (obviously). So I talked the lab into sending someone over to my house to draw my blood here :)
I think this will work much better.

Just a day in the life of a person with Hep C....getting ready to start thinking about a transplant and seeing a surgeon next month. Lots of major changes lie ahead but I think I'm ready.

Nothing and Everything

An "anonymous" reader commented on my blog post below, saying "what does this have to do with Hepatitis C?" While I'd usually ignore such a comment, I think this is an opportunity to educate.

If you simply read the post below, you'd think it has NOTHING to do with Hep C. But if you look a little more closely, think more deeply and read the goal statement at the top of the page, the post has EVERYTHING to do with Hep C. If you are looking for a plethora of medical jargon and information about Hep C, there are many good websites and forums (Hep C Voices is a great one) for technical questions regarding the disease. While I could choose to provide detailed medical information since I am a nurse practitioner, I purposely decided to develop my blog for people such as myself who have been through treatment failure (x2 for me!) and have liver damage to the point they've become very symptomatic. This blog is about coping with the day to day realities of living with Hep C.

It's fairly easy to feel glum and have little hope at times. Fatigue is a constant companion to those with symptomatic Hep C. I choose to explore the everyday bits and pieces of my life and take delight. Every moment, no matter how small and insignificant it may appear to be can hold great meaning; small bits of joy become the glue that holds me together, and things such as watching my children while delighting in their successes can bring great satisfaction. Personally, I've had many challenges this month so I was delighted to have a few occasions this weekend in which to experience joy and I wanted to share that joy as part of my personal journey. Yes, I have Hep C. Yes, it sucks and I feel like crap a lot. Yes, it would be easy to wallow in self pity. But that's not the path I'm choosing.

I'm currently reading the book: Healing, a Life with Chronic Illness by Marguerite Guzman Bouvard. What I read today could have been written by me, " I am now undertaking what is often a very difficult lesson for people in this culture: learning to listen to my body's needs rather than making list of action items; accepting rather than continually attempting to control." Then later, "[I may attend an important event at times] only to find myself out of commission for the next few days."

That's the choice I made this weekend. I chose to attend important events, knowing that it is likely I would be putting myself out of commission for a few days. But it was worth every minute, even though it means I spent the entire day in bed today and probably will do so again tomorrow. I choose to live and not be defined by my illness. So for me today, the post below had EVERYTHING to do with Hepatitis C. If this isn't what you are looking for, I'm sure you can find other more satisfying blogs to follow.

What is important

It's easy to get distracted with day to day life and forget what's important. It's also easy to take things for granted. Both are things I consciously work on as well as working on my spiritual self.

Our weekend has been great so far - our oldest son is a football coach and enjoyed a solid win in game 1 against a formidable opponent. In the big scheme of life, it might seem that sports are not really important but when a young man is working with youth and yearns to teach them not only a sport, but the greater lessons of life - sports is a great avenue. In sports, everyone is equal regardless of religion, social status or race. Teamwork and hard work are are lifelong skills. Character and discipline are also important life lessons. We're so proud of our son and his impact on young lives. He once said he could never choose an occupation in which he was not having an impact on the lives of others, particularly youth. Involvement in sports is not as trivial as it might seem at first blush; there is an opportunity to impact and change the course of young people's lives forever. Watching him out there in his element (as well as in the high school classroom) makes us beam with pride, as he treats his players with respect and dignity. And to see how much they love him back is the greatest reward of all.

We also moved our daughter into her new apartment. She is sharing it with 5 (yes 5!) other fine young ladies. Two are from India, one from Central America, one from Mexico and only one other Caucasian. We are looking forward to this experience for her as one roommate is devoutly Hindu and she is learning the importance of understanding, tolerance and respect for others. As a U of M alum myself, it is one of the greatest things about the university - it's diversity, which is obvious in every area of the campus. It is not unusual to stroll around campus and listen to the Indian students singing acapella in their native language, while a group of LGBT students stands in a show of unity while in another area of campus Orthodox Jews observe their religious practices of dress and fasting from sundown to sundown. Everyone fits in. It seems like a microcosm of what life should be, especially in America.

I find that even though I'm the mother, I often have much to learn from my own children. There is nothing that brings more satisfaction to my husband and I than watching our adult children blossom and fly...
We can't wait to see what lies ahead!

Words to help those who are healthy...

My son and his girlfriend arrived home safely and yes....she has giardia - the backpacker's worst enemy. She looked so pale and thin, I could see why my son was so concerned for her. They made the right decision to come home early.

Tomorrow I take my daughter to her new apartment in Ann Arbor to begin her sophomore year at the University of Michigan. All parents out there know how bittersweet this is, but it's what's is supposed to happen. I will certainly miss her immensely. She's had a job as the manager of the local ice cream shop for the last 4 summers and yesterday was her last day forever. She said "my days of scoopin' are done" as she plans to remain in A2 (A-squared, the common nickname for all of us U of M alums) next summer and complete an internship. She already has a job lined up as a research assistant for the fall term. She's making the most of her world-class education.

My husband and I have a couple of trips planned and although my health is definitely on the decline, I am looking forward to our time away. We don't schedule anything physically demanding and hope to get in a great deal of relaxation time.

I have a great resource for all people with Hepatitis C and their loved ones. It's called Caring Ambassadors Hepatitis C Choices (4th Edition) and it is the most comprehensive book about Hep C I've come across. I was reading it yesterday and came across this poignant statement which struck a chord from my own personal experience:

"Many patients noted that family and friends did not believe they were physically limited by HCV as they did not appear classically 'sick.' This led to accusations that HCV was not a "real" disease, like cancer or heart failure, and that instead the patient must be pretending to be ill."

I'ts sad, isn't it? I was once a bundle of energy and juggled numerous responsibilities well. I had a full-time job, four children, a home and full life. I now spend 65% of my time lying in bed and resting. And yet, I appear to be healthy. Yet...pathetically enough, I've been accused of using my I illness to get out of things I don't want to do. If any of you knew how many times I had missed out on things I really wanted to do because I was ill; of the many evenings lying here alone, crying because I was not able to attend important events or things that I sorely wished to atted you might understand. Please....do not judge a person's disability just by how they look. I appear healthy. Actually, more healthy than normal now that I am thin and have an elevated bilirubin, which makes my skin appear a bit tan - I look like the epitome of health. But I am far from that and while I do have days in which I feel well, most days are not so good. If you know someone who has an illness, call them, send them a card or note and let them know you care. It can be a very lonely life at times and sometimes that one call, card or note of caring can lift a person's spirits just when they need it.

Picking myself up

I've had one of the most stressful weeks of my entire life. I made a very difficult decision that will have a life-altering effect. This decision is final and there is no turning back. I've been reading a book about living with serious chronic illness, and I read the following passage last night. The author is talking about the pleasantry of people asking the simple question, "how are you?".....(an excerpt):

But unfortunately, as a disabled person I often feel deprived of conversation, , not about diagnosis or medical details, not as a complaint but rather, as a basic need to tell my story. The hard work of my everyday life is invisible to people who enjoy good health, because they have the very human propensity of taking their ease for granted. It's difficult to share with a healthy person such triumphs as walking around the block, or having a pain-free night. I also want to speak about how suffering has transformed me; illness is a school that yields surprising insights. ~ Marguerite Guzman Bouvard

I find that I prefer to be alone, and that when I'm with people I enjoy discussing rather deep subject matter. The latest fad in nail polish or tabloid story holds little interest for me (well, it never did but now I have even less tolerance for it). I want to get right to the heart of the matter and talk about things that are important. I feel compelled to announce,'I love you' when I am with a person I truly love and let them know how they have made a difference in my life.

The past 5 days have been incredibly difficult and I'm frazzled, worn-out and one step away from falling apart completely. My shell is cracked and everything inside is ready to spill out; only a thin membrane is holding everything in. Many big changes lie in the week ahead. My daughter heads back for her sophomore year of college. My son is returning home tomorrow (1 week early) from his hiking trip because his girlfriend became ill with giardia. The decision I made will begin to sink in. And life goes on...while I pick myself up and try not to break.