"In the end, we will remember not the words of our enemies, but the silence of our friends." Dr. Martin Luther King, Jr.
While reading for preparation in writing my book, I came across the quote above. I hit the nail on the head. One of the most difficult things in living with illness for me has been the loss of many friends and even a few family members. None of my friends ever said, "Hey Sue, we are not friends anymore", no nothing that obvious. The friendships simply faded away....slowly, until there was nothing left. "I never know when to call you - you might be resting" is a common concern. Plus...and I'm going to say it: it ain't easy being my friend sometimes. We may make a date to have lunch, go hiking in the woods...it doesn't matter, I'm likely to cancel. I listen to my body very closely, pace myself and if the timing is off, I cancel.
I'm coming up on 5 years since my diagnosis. My nurse case manager called me yesterday to say that everything was approved for me to go forward with a liver transplant workup and consultation. That is some scary stuff, but it's the only option left for me and I will explore the pros and cons.
For now, I am grieving the loss of my best friend, working on writing my book and trying to put one foot in front of the other. The gales of wind that brought 25 ft. swells to Lake Michigan yesterday seemed an appropriate metaphor for the way I am feeling now. Think about those you love and might be hurting; are you silent?
Wednesday, October 27, 2010
Thursday, October 21, 2010
Profound sadness...
For those of you who wish to read about Hep C, just move along and look at a different page because I am not going to talk about it today.
I am so profoundly sad and lost today. My very best friend of 30 years was found dead in her home yesterday; there was no indication of foul play or suicide. It appeared she died peacefully in her sleep. She was 51.
I can't stop crying.
I can't imagine life without her.
We always said we were like sisters, and not having a sister I considered her mine. She had 3 sisters and said I was better than a sister because there wasn't any baggage in our relationship.
I spent a week with her this summer at her family's cabin up north - now, so glad I did that. I'll never forget how we laughed and acted like teenage girls. She lived in Washington DC - quite a distance, but we saw each other 4-5 times a year. And...she planned to retire to our area to be near me, my family and other friends in the area. Her parents preceeded her in death. My children all love her to pieces. My now 23 year old son proposed to her when he was 4, he was so smitten with her. We still laugh about that and she has a picture of them together holding hands, with him looking up at her lovingly. She was a beloved member of our family.
I don't know what to do, I feel lost. A friend of mine writes beautiful poetry and she put this on her blog today, which I just have to share:
weeping and aching,
i longed to honor your passing.
i longed to honor your life.
searching everywhere,
i found only one answer.
to honor myself.
become all that I am.
and carry you inside that beauty.
That's about all I can do. I am so profoundly saddened and still wondering.....hoping.....that this is simply a bad dream.
I am so profoundly sad and lost today. My very best friend of 30 years was found dead in her home yesterday; there was no indication of foul play or suicide. It appeared she died peacefully in her sleep. She was 51.
I can't stop crying.
I can't imagine life without her.
We always said we were like sisters, and not having a sister I considered her mine. She had 3 sisters and said I was better than a sister because there wasn't any baggage in our relationship.
I spent a week with her this summer at her family's cabin up north - now, so glad I did that. I'll never forget how we laughed and acted like teenage girls. She lived in Washington DC - quite a distance, but we saw each other 4-5 times a year. And...she planned to retire to our area to be near me, my family and other friends in the area. Her parents preceeded her in death. My children all love her to pieces. My now 23 year old son proposed to her when he was 4, he was so smitten with her. We still laugh about that and she has a picture of them together holding hands, with him looking up at her lovingly. She was a beloved member of our family.
I don't know what to do, I feel lost. A friend of mine writes beautiful poetry and she put this on her blog today, which I just have to share:
weeping and aching,
i longed to honor your passing.
i longed to honor your life.
searching everywhere,
i found only one answer.
to honor myself.
become all that I am.
and carry you inside that beauty.
That's about all I can do. I am so profoundly saddened and still wondering.....hoping.....that this is simply a bad dream.
Monday, October 18, 2010
Remembering a very special day
One year ago today, all four of my children and seven of their friends ran a Marathon to raise money for Hepatitis C research. All 11 completed the marathon and it was a beautiful fall day. They had been working on it all summer - behind my back - and wanted to surprise me, and boy did they ever! They mailed letters out to their friends, my friends, family and former co-workers. Overall they raised over $3,000 to fund research on HCV. I will never forget that special day; they asked that people write me a note along with their donation so that they could pass it on to me to provide encouragement. I kept all those notes and they meant a lot. It was very humbling.
For those of you who don't know much about HCV, I thought I'd do a little Hepatitis 101 here. There are three forms of hepatitis, which are all viral illnesses.
Hepatitis A is the most common form of hepatitis. It is caused by eating contaminated foods or drinking water contaminated by the virus. Most people pick up the disease when traveling out of the country - but there is a vaccination against it, which is often given when the traveler is going to a "high-risk" area. This is the type of hepatitis most old-timers call "the yellow jaundice" because it causes very acute illness and yellowing of the skin and eyes. Hep A causes acute, severe illness marked by vomiting, diarrhea, yellowing of skin & eyes and fever. It is a self-limiting form of hepatitis; once you are over it, it doesn't come back (much like having a cold). However, it does cause permanent damage that renders a person unable to donate blood in the future. It is transmitted by the fecal--oral route and is quite uncommon in the U.S., but was common prior to 1940's.
Hepatitis B is much different. It is a bloodborne pathogen, transmitted blood-to-blood, but mostly through sexual transmission. Hep B is less common because there is a vaccination for it that is required for pretty much everyone nowadays. The vaccination is a series of 3 injections and all children must have the series prior to beginning school. All health care workers are also required to get the vaccinations for Hep B. It is considered a sexually transmitted disease. You will rarely find anyone in the U.S. with Hepatitis B.
Hepatitis C (formerly known as Non-A Non-B Hepatitis) is a bloodborne disease transmitted blood-to-blood. It is not considered to be sexually transmitted, however researchers are unable to prove it can't be transmitted sexually. The most common modes of transmission are sharing of needles between IV drug abusers, tattoos and body piercings, receiving a blood transmission prior to 1993 and occupational hazard of needlestick by healthcare workers. I believe I contracted HCV sometime in the 1980's when nurses did not wear gloves and we did not know about bloodborne pathogens; HIV/AIDS was unheard of and we simply were not careful. Most nurses who practiced prior to 1987 were not aware of the dangers and hospital practices were not protective. HCV is more common than HIV now and only 50% of all infected people can be cured. Some people acquire HCV and their immune system rids them of the virus on first pass. Those who do contract the virus usually do not become symptomatic for decades - usually within 20-30 years. We do not routinely screen people for HCV in the U.S., even those in "high risk" groups. In my case, I did not know I had it until I became very ill in 2005 and blood tests confirmed HCV. Symptoms usually begin to show up once the liver is so damaged it is no longer functioning properly. And....my spouse and all 4 kids needed to be tested since we lived together and were not careful around each other's blood AND I had 3 children during the 1980's - putting them at risk for acquiring the disease through childbirth (which is rare). I am so thankful that all 5 tested negative for the disease. And, since my only risk factor was occupational I am certain I contracted it via accidental needlestick. I had sustained at least a dozen during the 1980's.
So today I am thinking about my amazing family with gratefulness that I did not pass this disease on to them and also thinking about the many people with HCV who do not yet know they have the disease. HCV silently attacks your liver until it says, "STOP" and if the damage is too great, you are most likely to have a rough future ahead of you. And for those of you who feel more "sorry" for me because I acquired this disease by taking are of the sick, I wish to say this: It does not matter how the disease is acquired; NOBODY deserves to suffer from this illness, regardless of their risk factors. My worth is not more than any other person's.
For those of you who don't know much about HCV, I thought I'd do a little Hepatitis 101 here. There are three forms of hepatitis, which are all viral illnesses.
Hepatitis A is the most common form of hepatitis. It is caused by eating contaminated foods or drinking water contaminated by the virus. Most people pick up the disease when traveling out of the country - but there is a vaccination against it, which is often given when the traveler is going to a "high-risk" area. This is the type of hepatitis most old-timers call "the yellow jaundice" because it causes very acute illness and yellowing of the skin and eyes. Hep A causes acute, severe illness marked by vomiting, diarrhea, yellowing of skin & eyes and fever. It is a self-limiting form of hepatitis; once you are over it, it doesn't come back (much like having a cold). However, it does cause permanent damage that renders a person unable to donate blood in the future. It is transmitted by the fecal--oral route and is quite uncommon in the U.S., but was common prior to 1940's.
Hepatitis B is much different. It is a bloodborne pathogen, transmitted blood-to-blood, but mostly through sexual transmission. Hep B is less common because there is a vaccination for it that is required for pretty much everyone nowadays. The vaccination is a series of 3 injections and all children must have the series prior to beginning school. All health care workers are also required to get the vaccinations for Hep B. It is considered a sexually transmitted disease. You will rarely find anyone in the U.S. with Hepatitis B.
Hepatitis C (formerly known as Non-A Non-B Hepatitis) is a bloodborne disease transmitted blood-to-blood. It is not considered to be sexually transmitted, however researchers are unable to prove it can't be transmitted sexually. The most common modes of transmission are sharing of needles between IV drug abusers, tattoos and body piercings, receiving a blood transmission prior to 1993 and occupational hazard of needlestick by healthcare workers. I believe I contracted HCV sometime in the 1980's when nurses did not wear gloves and we did not know about bloodborne pathogens; HIV/AIDS was unheard of and we simply were not careful. Most nurses who practiced prior to 1987 were not aware of the dangers and hospital practices were not protective. HCV is more common than HIV now and only 50% of all infected people can be cured. Some people acquire HCV and their immune system rids them of the virus on first pass. Those who do contract the virus usually do not become symptomatic for decades - usually within 20-30 years. We do not routinely screen people for HCV in the U.S., even those in "high risk" groups. In my case, I did not know I had it until I became very ill in 2005 and blood tests confirmed HCV. Symptoms usually begin to show up once the liver is so damaged it is no longer functioning properly. And....my spouse and all 4 kids needed to be tested since we lived together and were not careful around each other's blood AND I had 3 children during the 1980's - putting them at risk for acquiring the disease through childbirth (which is rare). I am so thankful that all 5 tested negative for the disease. And, since my only risk factor was occupational I am certain I contracted it via accidental needlestick. I had sustained at least a dozen during the 1980's.
So today I am thinking about my amazing family with gratefulness that I did not pass this disease on to them and also thinking about the many people with HCV who do not yet know they have the disease. HCV silently attacks your liver until it says, "STOP" and if the damage is too great, you are most likely to have a rough future ahead of you. And for those of you who feel more "sorry" for me because I acquired this disease by taking are of the sick, I wish to say this: It does not matter how the disease is acquired; NOBODY deserves to suffer from this illness, regardless of their risk factors. My worth is not more than any other person's.
Friday, October 15, 2010
A long awaited Friday
It's Friday, October 15. I've been waiting - planning for this day for months. We have family visiting from California and planned to head up north to see the colors (at their peak in Michigan now) as well as to go to our son's football game. He's the Varsity coach and high school teacher in a town about 3 hours away. I so look forward to watching him coach and the way the boys look up to him; he always tells me "I'm living my dream, mom." What more could I ask for?
I woke up feeling okay but as the day progressed, the worse I felt. I am still not recovered from our vacation. It's a feeling I hope I can adequately convey in the book I'm writing; it's very difficult to put it into words. When we were on vacation I pushed myself every day. I couldn't just wake up, slowly work my way into the day and go from there. I didn't want to miss anything so I forced myself up and out the door. I really had to push hard and most days I didn't really turn the corner until well after noon. But I just couldn't squander the opportunity of seeing all that beauty. And doing so has had a price: I'm still exhausted 2 weeks later - trying hard to get myself back into a rhythm.
Today was one of those days. While my heart and head wanted to feel well enough to go, my body was not cooperating. I hoped if I just took it easy this morning I could hang in there and things would improve. Instead....they got worse and by 2PM I knew I would really be pushing it to go. I don't generally do anything at all after 7PM, so that was a stretch all by itself just thinking I could go to a football game starting at 7 and ending around 9:30. I finally had to make the call and decided it best to stay back. My biggest fear is overdoing it and either 1) feeling so sick tomorrow I could barely get out of bed and/or 2) taking another week to recoup the strength I lost by pushing so hard. My husband & I agreed that this was best for me. He left. I cried. I'm alone for the next 24 hours except for my dogs.
I'm coming up on 5 years since I became ill. My crying lasted all of 3 minutes. I'm accustomed to this; it's part of my life now. I miss things that are important to me. And it just sucks.
I woke up feeling okay but as the day progressed, the worse I felt. I am still not recovered from our vacation. It's a feeling I hope I can adequately convey in the book I'm writing; it's very difficult to put it into words. When we were on vacation I pushed myself every day. I couldn't just wake up, slowly work my way into the day and go from there. I didn't want to miss anything so I forced myself up and out the door. I really had to push hard and most days I didn't really turn the corner until well after noon. But I just couldn't squander the opportunity of seeing all that beauty. And doing so has had a price: I'm still exhausted 2 weeks later - trying hard to get myself back into a rhythm.
Today was one of those days. While my heart and head wanted to feel well enough to go, my body was not cooperating. I hoped if I just took it easy this morning I could hang in there and things would improve. Instead....they got worse and by 2PM I knew I would really be pushing it to go. I don't generally do anything at all after 7PM, so that was a stretch all by itself just thinking I could go to a football game starting at 7 and ending around 9:30. I finally had to make the call and decided it best to stay back. My biggest fear is overdoing it and either 1) feeling so sick tomorrow I could barely get out of bed and/or 2) taking another week to recoup the strength I lost by pushing so hard. My husband & I agreed that this was best for me. He left. I cried. I'm alone for the next 24 hours except for my dogs.
I'm coming up on 5 years since I became ill. My crying lasted all of 3 minutes. I'm accustomed to this; it's part of my life now. I miss things that are important to me. And it just sucks.
Monday, October 11, 2010
The positives
I just realized what a downer that last post was, but it reflects the day-to-day challenges I face. Now I plan to refocus on the positives.
As my spouse and I were talking, we agreed that throughout this journey I've managed to be me. Even when I am at my worst, my spouse says he can still see me shine through the pain and suffering. I've also learned important lessons. All my life has been spent caring for others; not only as a professional nurse, but also as a wife, mother, daughter, sister and friend. Although difficult, I've made the transition which allows me to feel okay about not contributing as I have in the past.I've had to adjust my focus on caring for others to taking care of myself. I take pleasure in the smaller things in life; a college care package sent to a niece; a card sent to let someone know I'm thinking about them and helping each of my children in small, yet meaningful ways. This year I asked each of them what they wanted to do for Christmas. Each replied independently of one another: "just spend time together as a family." They don't want gifts or lavish treats - they simply all want to stay a few days at home in their old bedrooms and to"hang out." We are blessed to have 4 wonderful, grown children who are good friends with each other and we all get along well. We have fun together - watching movies that are family favorites, playing games, cooking together and bantering around the way families do. I get calls and texts from my kids at least 3 times a week from each and they lead very busy lives. There's a whole lot of love surrounding us and I don't take that for granted.
My spouse has had to make the most adjustments and we talked a lot about that too. He is happy to take on additional responsibilities to help. He is happy to sit with me, even if we are both simply reading or talking. His job is very demanding and he works out of town 2-3 days a week, which bothers him but it can't be changed. The company he works for is very understanding of his situation and allows a great deal of flexibility - he started with the company when he graduated college in 1978 and it's the only place he's ever worked so he's earned that privilege. They treat him well, as they should. Loyalty is one of his best traits.
And...I've found new ways of having joy in my life. I still have my #1 favorite: nature. I can't do as much as I used to, but I can take short hikes and get out into the woods. I can still do a little gardening, baking and a lot of reading. I adore my 2 dogs and don't know what I'd do without them. I've set goals: to continue with my consulting business at it's current pace, I'm writing a book about chronic illness from the perspective of a nurse and patient and I am giving serious thought to entering ArtPrize next year. I also have found a church home and have a few wonderful friends who are like sisters.
And...one of the most important: I still have good periods of time. I no longer have entire good days, but every once in awhile I have a few good hours and it's truly a gift.
As my spouse and I were talking, we agreed that throughout this journey I've managed to be me. Even when I am at my worst, my spouse says he can still see me shine through the pain and suffering. I've also learned important lessons. All my life has been spent caring for others; not only as a professional nurse, but also as a wife, mother, daughter, sister and friend. Although difficult, I've made the transition which allows me to feel okay about not contributing as I have in the past.I've had to adjust my focus on caring for others to taking care of myself. I take pleasure in the smaller things in life; a college care package sent to a niece; a card sent to let someone know I'm thinking about them and helping each of my children in small, yet meaningful ways. This year I asked each of them what they wanted to do for Christmas. Each replied independently of one another: "just spend time together as a family." They don't want gifts or lavish treats - they simply all want to stay a few days at home in their old bedrooms and to"hang out." We are blessed to have 4 wonderful, grown children who are good friends with each other and we all get along well. We have fun together - watching movies that are family favorites, playing games, cooking together and bantering around the way families do. I get calls and texts from my kids at least 3 times a week from each and they lead very busy lives. There's a whole lot of love surrounding us and I don't take that for granted.
My spouse has had to make the most adjustments and we talked a lot about that too. He is happy to take on additional responsibilities to help. He is happy to sit with me, even if we are both simply reading or talking. His job is very demanding and he works out of town 2-3 days a week, which bothers him but it can't be changed. The company he works for is very understanding of his situation and allows a great deal of flexibility - he started with the company when he graduated college in 1978 and it's the only place he's ever worked so he's earned that privilege. They treat him well, as they should. Loyalty is one of his best traits.
And...I've found new ways of having joy in my life. I still have my #1 favorite: nature. I can't do as much as I used to, but I can take short hikes and get out into the woods. I can still do a little gardening, baking and a lot of reading. I adore my 2 dogs and don't know what I'd do without them. I've set goals: to continue with my consulting business at it's current pace, I'm writing a book about chronic illness from the perspective of a nurse and patient and I am giving serious thought to entering ArtPrize next year. I also have found a church home and have a few wonderful friends who are like sisters.
And...one of the most important: I still have good periods of time. I no longer have entire good days, but every once in awhile I have a few good hours and it's truly a gift.
Lousy
There's no other way to say it: I've been feeling lousy. Mornings, which used to be my "good" time have become very difficult. I can't get myself going until 10 or so. Some days I never get myself going - those are the days in bed. My spouse and I were talking last night - about the last 2 years at this time, which we remember well. Two years ago I had just come off treatment and didn't yet know it hadn't worked and I was feeling pretty well. Our daughter was crowned homecoming queen; we took a trip up north to see the fall colors and I recall feeling especially well. I was certain I had been cured. I felt as well as I had since prior to my diagnosis in early 2006.
Last year at this time, I was teaching 2 university classes. I'll admit, it was a bit much and I struggled to do it - not wanting to give that part of me up. I was stubborn and wanted to continue nursing so I fought to keep my profession. But I had a mix of good and bad days and an occasional day in bed. I only canceled class once due to illness. Work wiped me out and on my days off, I usually just relaxed.
Flash forward to now. I spend 3-4 days in bed a week. I can't even imagine working on a regular basis. I do a bit of consulting....all done from home, and I can do that quite easily. I don't even care if I work as a nurse anymore. My ability to go to any certain event is less than 50% and I'm so accustomed to disappointment it seems as normal as a root canal. I cancel appointments on a regular basis. I struggle with overwhelming fatigue, pain, loss of appetite, vomiting, constant headache and difficulty sleeping.
As we had this discussion it made me a bit fearful, no that's not the right word. It made me sad for what lies ahead. It isn't going to get better. Not ever. The new protease inhibitor is not recommended for me (genotype 3) as it does not work on my type. There is very little hope.
And with all this I have to push forward and try to stay positive, all the while knowing I am slowly dying and I will never have my life back. Not ever; things will just get slowly worse. It's a big pill to swallow.
Last year at this time, I was teaching 2 university classes. I'll admit, it was a bit much and I struggled to do it - not wanting to give that part of me up. I was stubborn and wanted to continue nursing so I fought to keep my profession. But I had a mix of good and bad days and an occasional day in bed. I only canceled class once due to illness. Work wiped me out and on my days off, I usually just relaxed.
Flash forward to now. I spend 3-4 days in bed a week. I can't even imagine working on a regular basis. I do a bit of consulting....all done from home, and I can do that quite easily. I don't even care if I work as a nurse anymore. My ability to go to any certain event is less than 50% and I'm so accustomed to disappointment it seems as normal as a root canal. I cancel appointments on a regular basis. I struggle with overwhelming fatigue, pain, loss of appetite, vomiting, constant headache and difficulty sleeping.
As we had this discussion it made me a bit fearful, no that's not the right word. It made me sad for what lies ahead. It isn't going to get better. Not ever. The new protease inhibitor is not recommended for me (genotype 3) as it does not work on my type. There is very little hope.
And with all this I have to push forward and try to stay positive, all the while knowing I am slowly dying and I will never have my life back. Not ever; things will just get slowly worse. It's a big pill to swallow.
Wednesday, October 6, 2010
Falling, falling, falling
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.
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.
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