It's important for everyone - not just those with illness - to nurture the soul. There's no one right or wrong way as it is intensely personal and individualized. One of the positive aspects of having a chronic illness is that you have the opportunity to do it well because you have the precious commodity of TIME.
I used to be a super busy mom of 4 with a full-time career - high stress positions with loads of responsibility and four active kids who were involved in extra-curricular activities. Each day began at 5:30AM making lunches for everyone, getting them off to their respective schools (at one point I had a child in 3 different buildings - elemetary, middle and high school), getting ready for work, which involved professional attire, a decent hairdo, etc., 8-10 hour workdays, then rushing home to cook dinner, go to kids' events and maintaining a loving relationship with my spouse. I get tired just thinking of it. Stillness and quiet times were hard to come by. Many of you know this lifestyle very well.
Now I find the opposite; I have an abundance of solitude and time for reading, reflection and spiritual growth. The hardest part has been losing my ability to work full-time as I loved my job immensely. I've gotten over that (which took awhile) and now focus on smaller projects that bring satisfaction.
Yesterday was a day of soul-nurturing for me. My spouse & I went with 5 family members to an art show in Grand Rapids, called ArtPrize. This is the second year for this event and it is absolutely fabulous. Here's the link if you are interested: http://www.artprize.org/
I came home with a weary body but my soul was filled. We were surrounded with beauty at every turn. No matter how busy you are I think it's really important to MAKE this time for yourself, even if it's only 30 minutes a day. Just do something you love. While I am absolutely exhausted from walking around yesterday, it was worth it. Don't shortchange yourself; find your beauty and allow yourself to dwell there. Every day, as much as possible.
Sunday, October 3, 2010
Friday, October 1, 2010
Good news and bad news
You know the drill: I have good news to tell you and bad news. Which do you want to hear first?
I will begin with the good. I've started the research that will be required for my book. I'm getting myself up to date with current professional nursing approaches to patients suffering from chronic illness as well as conducting a literature review. My son's wonderful girlfriend is a nursing student at the University of Michigan and she took a course in Chronic Illness, so she is also planning to give me all her notes and required reading. I'm off to a good start and excited about the project. The hepatologist/transplant specialist in Detroit has received my entire medical record and is reviewing it now; I must wait until her office calls me to set up an appointment. It will probably be a 2-3 day ordeal that will include a liver biopsy and a battery of tests. I will be happy to have some answers and get the information I need to make a decision about pursuing a transplant (or not).
Okay, here's the bad. I've been feeling absolutely lousy. The last 4 days in a row I've woken to feeling as if I'd been hit by a bus or competed in a iron-man triathalon, without training. Every muscle, joint and bone hurts. On Tuesday, my hips and legs hurt so much I could hardly walk. The pain was definitely bone pain (a familiar feeling since I was on Neupogen during treatment and it's major side effect is bone pain). This means my bone marrow is working overtime for some reason and my guess would be low platelets. Again. When you have a chronic illness it becomes very important to listen to your body, so I said "Ok, I hear you loud and clear" and spent the entire day in bed yesterday, resting. I forced myself to eat 3 healthy meals and just let my bones do their work. But I woke up feeling pretty much the same today so I don't know how long this will last. Some days I can get up and work through it, but other days it does not get better and I finally acquiesce to resting. But...I'm hanging in there and am certainly not about to give up. I know I will have a "good" day in the future and I live for those days, which are becoming less frequent by the month.
I will begin with the good. I've started the research that will be required for my book. I'm getting myself up to date with current professional nursing approaches to patients suffering from chronic illness as well as conducting a literature review. My son's wonderful girlfriend is a nursing student at the University of Michigan and she took a course in Chronic Illness, so she is also planning to give me all her notes and required reading. I'm off to a good start and excited about the project. The hepatologist/transplant specialist in Detroit has received my entire medical record and is reviewing it now; I must wait until her office calls me to set up an appointment. It will probably be a 2-3 day ordeal that will include a liver biopsy and a battery of tests. I will be happy to have some answers and get the information I need to make a decision about pursuing a transplant (or not).
Okay, here's the bad. I've been feeling absolutely lousy. The last 4 days in a row I've woken to feeling as if I'd been hit by a bus or competed in a iron-man triathalon, without training. Every muscle, joint and bone hurts. On Tuesday, my hips and legs hurt so much I could hardly walk. The pain was definitely bone pain (a familiar feeling since I was on Neupogen during treatment and it's major side effect is bone pain). This means my bone marrow is working overtime for some reason and my guess would be low platelets. Again. When you have a chronic illness it becomes very important to listen to your body, so I said "Ok, I hear you loud and clear" and spent the entire day in bed yesterday, resting. I forced myself to eat 3 healthy meals and just let my bones do their work. But I woke up feeling pretty much the same today so I don't know how long this will last. Some days I can get up and work through it, but other days it does not get better and I finally acquiesce to resting. But...I'm hanging in there and am certainly not about to give up. I know I will have a "good" day in the future and I live for those days, which are becoming less frequent by the month.
Tuesday, September 28, 2010
I'm Baackk!!!
We just returned from a long and greatly needed vacation. We spent 2 weeks in Santa Fe, NM and if you've ever been there you'll know why it's so wonderful. New Mexico is called the "Land of Enchantment" and it is a very appropriate slogan. It is a spectacular state.
But...this is an end of an era for me. The trip was difficult and I am getting too ill to travel. We were there 14 days and I spent a total of 3 in bed. It was still completely worth it and I am glad I went. While I was staying in bed, my spouse (an engineer) happily went off in search of mechanical marvels and doing things I am physically incapable of doing. The altitude also played a role (it's 7000 ft. in Santa Fe) and it took a few days to adjust. Knowing my days of travel are over is hard. I have gypsy blood running through my veins and have always loved to travel. It's very difficult seeing pieces of your life shedding away bit by bit by bit.
I have the paperwork in motion to see the Hepatologist/Transplant specialist and I hope to get a call from her office soon to schedule the appointment. I do not wish to make any decisions - I want statistics, outcomes, pros and cons, etc. I want to make the decision that's right for me.
When I think back to 1 year ago, I can see quite plainly that I am much more ill. And, I am 60 lbs. lighter just from being ill. I can't imagine what another year will bring (another 60 lbs and I will be skeletal). I hope to get a better idea of my prognosis and quality of life from the doctor in Detroit. I've did a lot of checking and it seems she's the best around.
In the meantime, it's great to be back! My best to all........Sue
But...this is an end of an era for me. The trip was difficult and I am getting too ill to travel. We were there 14 days and I spent a total of 3 in bed. It was still completely worth it and I am glad I went. While I was staying in bed, my spouse (an engineer) happily went off in search of mechanical marvels and doing things I am physically incapable of doing. The altitude also played a role (it's 7000 ft. in Santa Fe) and it took a few days to adjust. Knowing my days of travel are over is hard. I have gypsy blood running through my veins and have always loved to travel. It's very difficult seeing pieces of your life shedding away bit by bit by bit.
I have the paperwork in motion to see the Hepatologist/Transplant specialist and I hope to get a call from her office soon to schedule the appointment. I do not wish to make any decisions - I want statistics, outcomes, pros and cons, etc. I want to make the decision that's right for me.
When I think back to 1 year ago, I can see quite plainly that I am much more ill. And, I am 60 lbs. lighter just from being ill. I can't imagine what another year will bring (another 60 lbs and I will be skeletal). I hope to get a better idea of my prognosis and quality of life from the doctor in Detroit. I've did a lot of checking and it seems she's the best around.
In the meantime, it's great to be back! My best to all........Sue
Monday, September 6, 2010
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.
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.
Thursday, September 2, 2010
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!
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!
Tuesday, August 31, 2010
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.
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.
Sunday, August 29, 2010
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.
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.
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