I'm really feeling a tug on my heart to do something for people who've been through HCV treatment that failed. It's a small percentage, especially with the new drugs that are working so well on genotype 1 (the most common in the US). The last I read is that less than 30% of people with HCV end up like me (treatment failure, no more options until liver fails and you get either 1. transplant or 2. die). But we're out here and we need support. I'm pulling together a few resources to see what I come up with.
One of my friends tweeted this the other day: *The function of music is to release us from the tyranny of conscious thought.* I'm a music lover, that's for sure and I need music in my life. Being raised in the 60's & 70's had an effect on what I like today but there are a few great new bands and one that I've come to appreciate is The Flaming Lips. One of my son's friends is a gifted musician with a good ear for music - he knows what I typically like and suggested that I try them out. So, here I will share the lyrics from my favorite song by the Flaming Lips. It's a sweet song with simple, almost childlike lyrics but it captures a piece of my heart and how I feel about those I love:
The Spiderbite Song:
When you got that spider bite on your hand
I thought we would have to break up the band
To lose your arm would surely upset your brain
The poison then could reach your heart from a vein
I was glad that it didn’t destroy you
How sad that would be
Cause if it destroyed you
It would destroy me
When you had that accident in your car
That whole thing just really seemed too bizarre
Dodging holes and telephone poles through the dash
A million to one that you would survive such a crash
I was glad that it didn’t destroy you
How sad that would be
Cause if it destroyed you
It would destroy me
When you fell in love, it was so sweet
So devoted, completely swept off your feet
Love is the greatest thing a heart can know
But the hole that it leaves in its absence can make you feel so low
And I was glad that it didn’t destroy you
How sad that would be
Cause if it destroyed you
It would destroy me
Tuesday, April 5, 2011
Monday, April 4, 2011
Social Support
Social support is very important when you have a chronic illness. While support networks for illnesses such as diabetes, heart disease and alcoholism are well developed - there just isn't much out there for those of us with Hep C. There is one support group in my area that's about 35 miles away and meets once a month on Thursday nights. Not the best location/time for me. Another place people turn to is the internet. I have a friend with an unusual mental illness who finds great support through internet forums online with other people who share her illness.
I know of 4 online Hep C forums. There are many other Hep C resources containing information, etc. but most are geared toward the newly diagnosed or people who are just beginning treatment. One forum is geared toward anyone with Hep C and does have long-term members, but once you've been diagnosed and have gone through unsuccessful treatment your needs change. I feel like I need ongoing support from others in my situation with practical, helpful information on what can help me feel better. Another need is to talk to others like me who understand what it's like to live the daily challenges of Hep C after treatment failure.
If any reader is aware of something that might be helpful, I would be very interested - particularly if it's online. HCV is now considered a national epidemic with an estimated 3.2 million people who have the disease in the U.S. (Centers for Disease Control).
I'm going to continue to look into this and maybe something needs to be done. With a bit of help, I may be up to the task so please leave your feedback. I need as much information as possible.
I know of 4 online Hep C forums. There are many other Hep C resources containing information, etc. but most are geared toward the newly diagnosed or people who are just beginning treatment. One forum is geared toward anyone with Hep C and does have long-term members, but once you've been diagnosed and have gone through unsuccessful treatment your needs change. I feel like I need ongoing support from others in my situation with practical, helpful information on what can help me feel better. Another need is to talk to others like me who understand what it's like to live the daily challenges of Hep C after treatment failure.
If any reader is aware of something that might be helpful, I would be very interested - particularly if it's online. HCV is now considered a national epidemic with an estimated 3.2 million people who have the disease in the U.S. (Centers for Disease Control).
I'm going to continue to look into this and maybe something needs to be done. With a bit of help, I may be up to the task so please leave your feedback. I need as much information as possible.
Thursday, March 31, 2011
Hospice and Chronic Illness
I met with Hospice for the first time today. Now don't get too worked up; Hospice is NOT what it used to be. When the Hospice movement first began, a patient needed to have a diagnosis with 6 months or less to live. Since that time the field of palliative care has expanded dramatically and Hospice care is offered much earlier. Hospice employees are working hard to get people in sooner, so it seemed to be a good time for me. I met with an intake person who sent me on to a grief counselor. And before I get too far into this, I saw my doctor yesterday - he is very pleased that Fentanyl is working so well for me but unhappy with my weight loss (10 more lbs, bringing the total to 68 lbs.) So I'm going to work on EATING more. Otherwise everything was pretty good for me. I now weigh the same as both of my daughters (give or take 5) - too bad they don't live closer so we could share clothes. JUST KIDDING.
The counselor gave me a few excellent handouts and I want to include excerpts that really spoke to me. First this from The Chronic Illness Experience by Cheri Register:
There is a spectrum between the two choices of perfectly healthy and hopelessly ill. For example,
"You can tough it out, ignoring symptoms at the risk of getting worse, or you can trust one doctor's judgment at the risk of selecting unwisely."
"You can keep your ailment secret at the risk of deception, or you can talk openly about it at the risk of self-pity."
"You can ask friends for help at the risk of becoming a burden, or you can hold fast to your independence at the risk of isolation."
"You can strain your body to its limit at the risk of harming yourself, or you can play it safe at the risk of becoming an invalid."
"You can be angry about your fate at the risk of bitterness or you can focus only on your blessings, at the risk of self-delusion."
Wow wow wow!
Then, and interview with Elvira Aletta, a clinical psychologist who also suffers from a chronic illness, who has 5 rules for living:
1. Be confident you have the right doctor.(I am 100% good on this one)
2. Define your circle of support carefully. People may surprise you! Peripheral friends may step up and be terrific support while others you thought you could count on cave. (I have truly had this experience and it is absolutely shocking when I think back to who my "friends" were before my illness and take stock of my current friendships).
3. Protect your health as you would a small child. When you see those yellow lights blinking, its time to stop, assess and make changes.
4. Create a new measuring stick. Our self-esteem lies in the standards in which we measure ourselves as we go through life. To thrive with chronic illness, throw out the old and re-think your standards.
5. Have dreams and strive for them! Keep having goals for living, both big and small. (I have found it imperative to have things to look forward to. I can't survive without it!)
I can tell this is going to be helpful for me. These handouts seemed to be speaking directly to me, so it's obvious that Hospice counselors know what they are doing.
Oh, and another thing: the services are free. 100% free. Finally, a dose of justice!
Ooh, this is going to be good. I'll keep you posted!
The counselor gave me a few excellent handouts and I want to include excerpts that really spoke to me. First this from The Chronic Illness Experience by Cheri Register:
There is a spectrum between the two choices of perfectly healthy and hopelessly ill. For example,
"You can tough it out, ignoring symptoms at the risk of getting worse, or you can trust one doctor's judgment at the risk of selecting unwisely."
"You can keep your ailment secret at the risk of deception, or you can talk openly about it at the risk of self-pity."
"You can ask friends for help at the risk of becoming a burden, or you can hold fast to your independence at the risk of isolation."
"You can strain your body to its limit at the risk of harming yourself, or you can play it safe at the risk of becoming an invalid."
"You can be angry about your fate at the risk of bitterness or you can focus only on your blessings, at the risk of self-delusion."
Wow wow wow!
Then, and interview with Elvira Aletta, a clinical psychologist who also suffers from a chronic illness, who has 5 rules for living:
1. Be confident you have the right doctor.(I am 100% good on this one)
2. Define your circle of support carefully. People may surprise you! Peripheral friends may step up and be terrific support while others you thought you could count on cave. (I have truly had this experience and it is absolutely shocking when I think back to who my "friends" were before my illness and take stock of my current friendships).
3. Protect your health as you would a small child. When you see those yellow lights blinking, its time to stop, assess and make changes.
4. Create a new measuring stick. Our self-esteem lies in the standards in which we measure ourselves as we go through life. To thrive with chronic illness, throw out the old and re-think your standards.
5. Have dreams and strive for them! Keep having goals for living, both big and small. (I have found it imperative to have things to look forward to. I can't survive without it!)
I can tell this is going to be helpful for me. These handouts seemed to be speaking directly to me, so it's obvious that Hospice counselors know what they are doing.
Oh, and another thing: the services are free. 100% free. Finally, a dose of justice!
Ooh, this is going to be good. I'll keep you posted!
Wednesday, March 30, 2011
A Tribute to my friend
I lost my closest friend on October 20, 2010, very suddenly. The two of us had spent an idyllic week together at her family's cabin in northern Michigan in August - a time I will cherish forever. Tonight, a memorial service is being held for her in Washington, DC, where she headed a large branch of the U.S. Agency for International Development. Since I am unable to attend, this is for you, dear friend - in my heart always:
From “The Prophet” by Khalil Gibran
On Friendship
And a youth said, "Speak to us of Friendship."
Your friend is your needs answered.
He is your field which you sow with love and reap with thanksgiving.
And he is your board and your fireside.
For you come to him with your hunger, and you seek him for peace.
When your friend speaks his mind you fear not the "nay" in your own mind, nor do you withhold the "ay."
And when he is silent, your heart ceases not to listen to his heart;
For without words, in friendship, all thoughts, all desires, all expectations are born and shared, with joy that is unacclaimed.
When you part from your friend, you grieve not;
For that which you love most in him may be clearer in his absence, as the mountain to the climber is clearer from the plain.
And let there be no purpose in friendship save the deepening of the spirit.
For love that seeks aught but the disclosure of its own mystery is not love but a net cast forth: and only the unprofitable is caught.
And let your best be for your friend.
If he must know the ebb of your tide, let him know its flood also.
For what is your friend that you should seek him with hours to kill?
Seek him always with hours to live.
For it is his to fill your need, but not your emptiness.
And in the sweetness of friendship let there be laughter, and sharing of pleasures.
For in the dew of little things the heart finds its morning and is refreshed.
From “The Prophet” by Khalil Gibran
On Friendship
And a youth said, "Speak to us of Friendship."
Your friend is your needs answered.
He is your field which you sow with love and reap with thanksgiving.
And he is your board and your fireside.
For you come to him with your hunger, and you seek him for peace.
When your friend speaks his mind you fear not the "nay" in your own mind, nor do you withhold the "ay."
And when he is silent, your heart ceases not to listen to his heart;
For without words, in friendship, all thoughts, all desires, all expectations are born and shared, with joy that is unacclaimed.
When you part from your friend, you grieve not;
For that which you love most in him may be clearer in his absence, as the mountain to the climber is clearer from the plain.
And let there be no purpose in friendship save the deepening of the spirit.
For love that seeks aught but the disclosure of its own mystery is not love but a net cast forth: and only the unprofitable is caught.
And let your best be for your friend.
If he must know the ebb of your tide, let him know its flood also.
For what is your friend that you should seek him with hours to kill?
Seek him always with hours to live.
For it is his to fill your need, but not your emptiness.
And in the sweetness of friendship let there be laughter, and sharing of pleasures.
For in the dew of little things the heart finds its morning and is refreshed.
Tuesday, March 22, 2011
A brief scare
The Fentanyl patch has been nothing short of miraculous. Two months ago, I could not drive 1/2 hour away and last week I handled a 2-1/2 hour drive with ease. I had two fun-filled days, and returned grateful for having such an improved quality of life.
But I've wondered...how long with this last? It's always in the back of my mind because this new way of being seems miraculous! It's almost too good to be true and I want it to last forever.
But I hit a wall on Sunday and felt quite ill. My spouse was gone for the weekend and I was here alone, which probably didn't help. But I was having problems with pain and feeling that old sense of malaise that has been my constant companion for the last five years and I began to get scared. What if this was the end of my reprieve? What if the patch was no longer working and I'd have no choice but to return to the suffering I'd had before. For personal reasons I won't go into detail, but a couple of things had happened that upset me greatly (emotionally). Add being here alone I think that although I felt well while I took my trip, it was still pushing my body far beyond what it's been accustomed to. I sorely missed my spouse - when you have an "empty nest" you rely on each other so much and my husband is my very best friend and companion.
He returned Sunday night and had plans to work from home Monday, which was a good thing because I was physically and emotionally spent. I woke up at 8:30 (!!!) and was still exhausted; I took 2 Ibuprofen and went back to sleep until 12:30PM. And I slowly crawled out of feeling poorly to regaining my bearings by late Monday evening.
I am on Fentanyl that delivers 25 mcg/hr. I looked in my pharmacology book and noticed it also comes in 50,75 and 100 mcg/hr strengths. Whew! When I become tolerant of the 25mcg. dose, I have options. That info was very helpful.
Nurses are always taught to work with patients to reduce stress. In normal healthy adults, it's easy to suck up a couple of stressful days. But when you are very sick, a couple of stressful days can knock you right out. I'm going to work on ways to avoid stress (as some IS avoidable) and ways to deal with it better so it doesn't take such a toll on my body. What do you do when you feel stressed? I'd be interested in hearing what helps others. But, don't worry - I am 100% back to normal now and my brief scare was just that: a brief scare.
But I've wondered...how long with this last? It's always in the back of my mind because this new way of being seems miraculous! It's almost too good to be true and I want it to last forever.
But I hit a wall on Sunday and felt quite ill. My spouse was gone for the weekend and I was here alone, which probably didn't help. But I was having problems with pain and feeling that old sense of malaise that has been my constant companion for the last five years and I began to get scared. What if this was the end of my reprieve? What if the patch was no longer working and I'd have no choice but to return to the suffering I'd had before. For personal reasons I won't go into detail, but a couple of things had happened that upset me greatly (emotionally). Add being here alone I think that although I felt well while I took my trip, it was still pushing my body far beyond what it's been accustomed to. I sorely missed my spouse - when you have an "empty nest" you rely on each other so much and my husband is my very best friend and companion.
He returned Sunday night and had plans to work from home Monday, which was a good thing because I was physically and emotionally spent. I woke up at 8:30 (!!!) and was still exhausted; I took 2 Ibuprofen and went back to sleep until 12:30PM. And I slowly crawled out of feeling poorly to regaining my bearings by late Monday evening.
I am on Fentanyl that delivers 25 mcg/hr. I looked in my pharmacology book and noticed it also comes in 50,75 and 100 mcg/hr strengths. Whew! When I become tolerant of the 25mcg. dose, I have options. That info was very helpful.
Nurses are always taught to work with patients to reduce stress. In normal healthy adults, it's easy to suck up a couple of stressful days. But when you are very sick, a couple of stressful days can knock you right out. I'm going to work on ways to avoid stress (as some IS avoidable) and ways to deal with it better so it doesn't take such a toll on my body. What do you do when you feel stressed? I'd be interested in hearing what helps others. But, don't worry - I am 100% back to normal now and my brief scare was just that: a brief scare.
Friday, March 18, 2011
Low self-esteem vs. loss of self
In our nursing psych classes we learned a great deal about people with low self-esteem, particularly teenagers. It seems so common that it is almost considered a normal part of growing up and teenage girls tend to feel this more than boys. I'm not sure this is currently the case, but growing up in the 60's & 70's I would say that it seemed true. Many of my friends had low self esteem. And now, some of my adult peers tell me how they suffered these feelings as teens, and I feel sad for them. I don't know why, but I never had that problem. I feel very fortunate and I think I had a very strong sense of self; call it stubbornness or being strong-willed, I am thankful because it got me through some pretty rough times.
But having chronic illness can cause a loss of self and I have certainly experienced that tenfold. First, I lost my health, one of those things so easily taken for granted. Next, I lost my ability to practice nursing which was my life's work right when I was reaching the point of greatest achievements - all of which I'd worked so hard to get. I also lost the ability to be the kind of wife and mother my family was accustomed to; I couldn't make dinner every night; I couldn't go out to see a movie or spend a day hiking in the woods. And...during this time, my kids grew up and we experienced the empty nest. I don't know what that would feel like under normal circumstances, but for me it was another adjustment in a life already complicated by loss and adjustments that seemed too much to bear at times. For those without illness, it is difficult - impossible maybe - to really understand the losses; not knowing if you can commit to anything because you don't know if you'll even be able to get out of bed on a given day. Yes, we learned (in college) about the loss of self that people experience, especially the elderly or those who lose a spouse or child. A person's identity is completely rearranged and it's not easy to achieve a sense of balance.
I am definitely feeling the loss of self. Although I've certainly been blessed to have been given a reprieve, it's always in the back of my mind, "how long will this last?" I can't help but feel like a shell of the person I once was. At times, I feel lonely, forgotten and mistaken. I haven't quite adjusted to the new "me" because she does not resemble the person I was 10 years ago, but I work hard at it.
I'm definitely feeling the pull to finish writing the book. I think that the reading I'll have to do just to write the remaining chapters may help me understand these drastic changes. In life, we set out upon a certain path, with specific goals and dreams. It's hard to see them shattered and it's hard to change course. There's so much loss, grief, and feeling forgotten while we prepare for our departure from this world. If you know someone in my situation, especially during this Lenten season, just take a moment to let them know you are thinking about them. Life is not about the big things. The little things that make up each day are what really matter. When I spent the day Wednesday with my daughter and she commented on how lucky she was to have us for her parents, I held that close. It was a simple, offhand comment but it meant the world to me. I felt like someone; a mother who was loved and appreciated.
But having chronic illness can cause a loss of self and I have certainly experienced that tenfold. First, I lost my health, one of those things so easily taken for granted. Next, I lost my ability to practice nursing which was my life's work right when I was reaching the point of greatest achievements - all of which I'd worked so hard to get. I also lost the ability to be the kind of wife and mother my family was accustomed to; I couldn't make dinner every night; I couldn't go out to see a movie or spend a day hiking in the woods. And...during this time, my kids grew up and we experienced the empty nest. I don't know what that would feel like under normal circumstances, but for me it was another adjustment in a life already complicated by loss and adjustments that seemed too much to bear at times. For those without illness, it is difficult - impossible maybe - to really understand the losses; not knowing if you can commit to anything because you don't know if you'll even be able to get out of bed on a given day. Yes, we learned (in college) about the loss of self that people experience, especially the elderly or those who lose a spouse or child. A person's identity is completely rearranged and it's not easy to achieve a sense of balance.
I am definitely feeling the loss of self. Although I've certainly been blessed to have been given a reprieve, it's always in the back of my mind, "how long will this last?" I can't help but feel like a shell of the person I once was. At times, I feel lonely, forgotten and mistaken. I haven't quite adjusted to the new "me" because she does not resemble the person I was 10 years ago, but I work hard at it.
I'm definitely feeling the pull to finish writing the book. I think that the reading I'll have to do just to write the remaining chapters may help me understand these drastic changes. In life, we set out upon a certain path, with specific goals and dreams. It's hard to see them shattered and it's hard to change course. There's so much loss, grief, and feeling forgotten while we prepare for our departure from this world. If you know someone in my situation, especially during this Lenten season, just take a moment to let them know you are thinking about them. Life is not about the big things. The little things that make up each day are what really matter. When I spent the day Wednesday with my daughter and she commented on how lucky she was to have us for her parents, I held that close. It was a simple, offhand comment but it meant the world to me. I felt like someone; a mother who was loved and appreciated.
Monday, March 7, 2011
Thank You President Obama
PRESS RELEASE
February 14, 2011
For Immediate Release
Contact:
Martha Saly
mbsaly@nvhr.org
www.NVHR.org
NVHR: Administration's 2012 Budget Proposal Represents 'Sea Change'
Budget Proposal Calls for $5 Million Increase
For State-based Surveillance, Screening & Treatment Programs
In National Response to Viral Hepatitis Epidemic
Washington, DC-The Administration's 2012 budget proposal to increase federal funding for expanded state and locally based viral hepatitis surveillance, screening, and treatment by more than $5 million heralds a sea change in our nation's national strategy to respond to the viral hepatitis epidemic, the National Viral Hepatitis Roundtable (NVHR) said today.
"On behalf of more than 6 million Americans afflicted with viral hepatitis B and C, NVHR would like to say, 'Thank you, Mr. President," said NVHR Director Martha Saly. "With this budget proposal of $25 million, the Administration has recognized that early intervention and prevention are the cornerstones of an effective national viral hepatitis strategy. In the coming months, NVHR looks forward to working closely with the Administration and Members of Congress from both sides of the aisle to make this proposal reality."
More than 6 million Americans are estimated to be afflicted with viral hepatitis and three-quarters of them don't know it. Most infected individuals only become aware of their disease after it has progressed to liver failure, cirrhosis, or liver cancer. With the vast majority of liver cancers caused by unchecked viral hepatitis, the Administration's increased funding proposal for early intervention and treatment promises to help reduce the incidence of liver cancer as well.
The Administration's budget proposal on viral hepatitis specifically states:
"CDC's FY 2012 request of $25,000,000 for VH reflects an increase of $5,222,000 above the FY 2010 level. With this increase, CDC will expand and strengthen surveillance capacity in 10 high burden state and local health departments to detect VH transmission, monitor health disparities and implementation and impact of recommended prevention services; develop and execute VH awareness and training programs for public health and clinical care professionals to implement and scale-up VH screening and care referral; and enhance work with global partners to implement VH surveillance and prevention programs in high burden countries."
The Administration's budget proposal is the first of many new expected developments on viral hepatitis in 2011. Next month, the US Department of Health & Human Services is expected to unveil a national strategy for the prevention of viral hepatitis and liver cancer. On Capitol Hill, bipartisan legislation that garnered support from over 70 House Members in the 111th Congress is expected to be introduced again. And this summer, two new drug therapies are expected to receive final approval from the Food & Drug Administration (FDA) that will great enhance hepatitis C treatment.
February 14, 2011
For Immediate Release
Contact:
Martha Saly
mbsaly@nvhr.org
www.NVHR.org
NVHR: Administration's 2012 Budget Proposal Represents 'Sea Change'
Budget Proposal Calls for $5 Million Increase
For State-based Surveillance, Screening & Treatment Programs
In National Response to Viral Hepatitis Epidemic
Washington, DC-The Administration's 2012 budget proposal to increase federal funding for expanded state and locally based viral hepatitis surveillance, screening, and treatment by more than $5 million heralds a sea change in our nation's national strategy to respond to the viral hepatitis epidemic, the National Viral Hepatitis Roundtable (NVHR) said today.
"On behalf of more than 6 million Americans afflicted with viral hepatitis B and C, NVHR would like to say, 'Thank you, Mr. President," said NVHR Director Martha Saly. "With this budget proposal of $25 million, the Administration has recognized that early intervention and prevention are the cornerstones of an effective national viral hepatitis strategy. In the coming months, NVHR looks forward to working closely with the Administration and Members of Congress from both sides of the aisle to make this proposal reality."
More than 6 million Americans are estimated to be afflicted with viral hepatitis and three-quarters of them don't know it. Most infected individuals only become aware of their disease after it has progressed to liver failure, cirrhosis, or liver cancer. With the vast majority of liver cancers caused by unchecked viral hepatitis, the Administration's increased funding proposal for early intervention and treatment promises to help reduce the incidence of liver cancer as well.
The Administration's budget proposal on viral hepatitis specifically states:
"CDC's FY 2012 request of $25,000,000 for VH reflects an increase of $5,222,000 above the FY 2010 level. With this increase, CDC will expand and strengthen surveillance capacity in 10 high burden state and local health departments to detect VH transmission, monitor health disparities and implementation and impact of recommended prevention services; develop and execute VH awareness and training programs for public health and clinical care professionals to implement and scale-up VH screening and care referral; and enhance work with global partners to implement VH surveillance and prevention programs in high burden countries."
The Administration's budget proposal is the first of many new expected developments on viral hepatitis in 2011. Next month, the US Department of Health & Human Services is expected to unveil a national strategy for the prevention of viral hepatitis and liver cancer. On Capitol Hill, bipartisan legislation that garnered support from over 70 House Members in the 111th Congress is expected to be introduced again. And this summer, two new drug therapies are expected to receive final approval from the Food & Drug Administration (FDA) that will great enhance hepatitis C treatment.
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