I've experienced a relatively new development in the last couple of months: falling. I was working in my garden last week and fell twice for no apparent reason. I was not dizzy and I didn't lose my balance at all. I simply fell. Once onto my butt and once onto my face. My reflexes were good and I braced myself each time. I am pretty sure the falling is a side effect of my medications.
With my low platelet count (I am having rechecked tomorrow), a simple fall can leave me with inordinately large, dark bruises. I have a doozy on my right leg - it would alarm most people to see it. Yesterday, while walking back from the mailbox I almost fell again but caught myself. Thank goodness or I would have fallen onto the cement driveway. Not good.
We took several short hikes while vacationing - all were listed in trail guides as "easy" - one was even wheelchair accessible. My spouse noticed that I tended to trip and stumble more than usual. I never fell completely, but came pretty darn close at least a dozen times. This worries him when he is gone all day and it worries me as well. We have a 2-story house (built in 1897) and I go up and down the stairs a lot during the course of a day - it would be very bad to fall there. It kinda reminds me of those TV commercials - "I've fallen and I can't get up!" which is somewhat humorous until it happens to you or someone you love. Just like my grandma used to say, "Eee Gad!"
I'm not feeling so well today either and I'd hoped to work in my garden. I scrapped that plan and am going to accomplish a few other things. I don't drive when I feel like this either. I keep thinking that what I need most in my life right now is a driver. I could get so much more accomplished if I didn't have to drive! But my first responsibility is to my own safety and the safety of other motorists on the road, so no driving unless I am tip-top. Tip-top is becoming pretty uncommon.
Wednesday, October 6, 2010
Monday, October 4, 2010
Isolation
Well, I had one good day and made the most of it, but this morning I woke up at 5 A.M having a great deal of pain. It's becoming more regular; severe joint, bone and muscle pain pretty much everywhere but most notably in my hips and legs. There are some conditions associated with Hep C that I could be developing, or it could simply be the virus itself and my bone marrow trying to keep up with my low blood counts. I hope to have answers soon.
I must include a chapter on social isolation in my book. I am a person who has always worked and raised 4 children, so I am accustomed to a hearty (& loud) social life. Now, with an empty nest and long days home alone, I'll admit - I feel very lonely. Many friends call occasionally and a few call regularly but I've also gone days on end without one phone call. While I consider myself a person who needs a great deal of solitude, I also enjoy social interaction and those long days seem like being in a desert without water. It's hard to make arrangements to meet up with friends when there is a 50/50 chance I will feel up to it. Some people understand and hang in there with me, but others do not. And, being that I do not look terribly ill I think I am almost forgotten by some. Let me rephrase: I am forgotten.
I have choices; I could lie in bed and cry all day or try to make the most of my time. 99% of the time I choose the latter, but earlier in my illness it was more difficult. I lost a few friends, that's for sure but I've also gained a few who truly understand for one reason or another.
Today I'm making the most of things but I do feel lonely. My spouse often works out of town and he's gone today so it's just me here. I am thankful for the projects I have started and especially love my 2 dogs who provide great companionship. I hope this doesn't come across as whiny; I just want to share an understanding of chronic illness and social isolation is definitely part of the equation.
I must include a chapter on social isolation in my book. I am a person who has always worked and raised 4 children, so I am accustomed to a hearty (& loud) social life. Now, with an empty nest and long days home alone, I'll admit - I feel very lonely. Many friends call occasionally and a few call regularly but I've also gone days on end without one phone call. While I consider myself a person who needs a great deal of solitude, I also enjoy social interaction and those long days seem like being in a desert without water. It's hard to make arrangements to meet up with friends when there is a 50/50 chance I will feel up to it. Some people understand and hang in there with me, but others do not. And, being that I do not look terribly ill I think I am almost forgotten by some. Let me rephrase: I am forgotten.
I have choices; I could lie in bed and cry all day or try to make the most of my time. 99% of the time I choose the latter, but earlier in my illness it was more difficult. I lost a few friends, that's for sure but I've also gained a few who truly understand for one reason or another.
Today I'm making the most of things but I do feel lonely. My spouse often works out of town and he's gone today so it's just me here. I am thankful for the projects I have started and especially love my 2 dogs who provide great companionship. I hope this doesn't come across as whiny; I just want to share an understanding of chronic illness and social isolation is definitely part of the equation.
Sunday, October 3, 2010
Nurturing your soul
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.
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.
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!
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