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.
Friday, March 18, 2011
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.
Sunday, March 6, 2011
Miracles..
I believe in miracles, and I've experienced a miracle. This new medication has changed my life! I feel so good! I want to run out and do all the things I haven't been able to do the last couple of years and shout to the sky - Thank you God! I've been out L-I-V-I-N-G and sleeping well. I am even hungry! My mind is clear and sharp again. it's truly a miracle.
Funny, even my dreaming has changed. I'm having happy dreams every night and waking up refreshed and ready for the new day, every day. I have very little pain. I can still feel I am not healthy, but I have been doing things and forgetting I have Hep C! I can't remember the last time I had long periods of time when I wasn't thinking about how lousy I felt. Thanks to all of you for your thoughts, prayers and support.
Sorry, gotta go - I've got things to do.......
Funny, even my dreaming has changed. I'm having happy dreams every night and waking up refreshed and ready for the new day, every day. I have very little pain. I can still feel I am not healthy, but I have been doing things and forgetting I have Hep C! I can't remember the last time I had long periods of time when I wasn't thinking about how lousy I felt. Thanks to all of you for your thoughts, prayers and support.
Sorry, gotta go - I've got things to do.......
Monday, February 28, 2011
I'm baack!
Wow, the last two weeks have been scary. Hands down, the most ill I've been. I was beginning to think I wouldn't make it, and finally on Friday I called my doctor. He sent me to the ER. After a short hospitalization, they ruled out a few things but my liver is definitely failing. I had spent two weeks of using all my energy fighting how sick I'd become and periods of excruciating pain. I wasn't eating, and when I did - I vomited about 1/2 the time. I was barely able to care for myself and had to get help to come in. I even needed a friend to help me take a shower! Pathetic!
My doctor was very understanding and I now fall into the category of "palliative care", a medical term meaning you treat the patient in a manner which provides the patient the highest quality of life. A patient enters this phase of life when they are dying. And boy, did I feel like I was close. I wasn't sure I was gonna make it.
I am a person with many odd reactions to medications. For example, I am allergic to Morphine. And, with liver disease I can't take more than 1 gram of Acetaminophen a day. This is very limiting when it comes to pain control. Dilauded is a common pain medication used for people like me, but I have a paradoxical reaction to it; while it does take the pain away, I am wired and hyper and can't sleep. I have that reaction to quite a few common medications. All that was left to try was a Fentanyl Patch. Anyone with a medical background knows what this is; it's a med used for those who are gravely ill. It's like a clear band-aid infused with Fentanyl - a potent narcotic - that delivers the drug in a consistent, time-release fashion. You put it on your skin and each patch lasts 72 hours, then you change it.
The most wonderful, unexpected and extraordinary thing occurred; I feel like myself again for the first time in months. Maybe even more than a year! I have energy! My mind is clear! I can do fun things and enjoy them because I'm not fighting how lousy I feel. It's a miracle, it truly is. And it doesn't make me feel dopey or loopy. I can drive!
So, I'm going to soak up every second I can. This may be the best of what lies ahead, and I can't waste a precious, sacred moment. I feel like I have a short chance at living and I've gotta grab it while I can. I would ask for those of you reading who care, please pray and/or send positive thoughts - a couple of my children are really struggling and it's been breaking my heart. Please, Dear God, let them come and share this time with me. It may be all we have left. Amen.
My doctor was very understanding and I now fall into the category of "palliative care", a medical term meaning you treat the patient in a manner which provides the patient the highest quality of life. A patient enters this phase of life when they are dying. And boy, did I feel like I was close. I wasn't sure I was gonna make it.
I am a person with many odd reactions to medications. For example, I am allergic to Morphine. And, with liver disease I can't take more than 1 gram of Acetaminophen a day. This is very limiting when it comes to pain control. Dilauded is a common pain medication used for people like me, but I have a paradoxical reaction to it; while it does take the pain away, I am wired and hyper and can't sleep. I have that reaction to quite a few common medications. All that was left to try was a Fentanyl Patch. Anyone with a medical background knows what this is; it's a med used for those who are gravely ill. It's like a clear band-aid infused with Fentanyl - a potent narcotic - that delivers the drug in a consistent, time-release fashion. You put it on your skin and each patch lasts 72 hours, then you change it.
The most wonderful, unexpected and extraordinary thing occurred; I feel like myself again for the first time in months. Maybe even more than a year! I have energy! My mind is clear! I can do fun things and enjoy them because I'm not fighting how lousy I feel. It's a miracle, it truly is. And it doesn't make me feel dopey or loopy. I can drive!
So, I'm going to soak up every second I can. This may be the best of what lies ahead, and I can't waste a precious, sacred moment. I feel like I have a short chance at living and I've gotta grab it while I can. I would ask for those of you reading who care, please pray and/or send positive thoughts - a couple of my children are really struggling and it's been breaking my heart. Please, Dear God, let them come and share this time with me. It may be all we have left. Amen.
Thursday, February 24, 2011
Sorry folks
I've just been far too sick to blog lately, and anything I'd have to say would be depressing so hang in there, I'll be back after I get through this rough patch.
Friday, February 18, 2011
Cryoglobulinemia
Many people with HCV acquire an auto-immune condition called Essential Mixed Cryoglobulinemia. Now that's a mouthful, but for those who are health care professionals - we all know conditions that sound even more intimidating (ITP, the Cranial nerves and how to check each one, and my all time favorite: disseminated introvascular coagulopathy, or DIC for short). Cryoglobulinemia is defined as the presence of abnormal antibodies called cryoglobulins in the blood; the condition may lead to kidney damage, failure, and a variety of other symptoms. There are three types, and the "mixed" type is common in people with long-term HCV.
A famous rock star (who shall be left unnamed, but he comes from nearby town and visits here in the summer - my daughter met him, has a pic with him and asked him to write me a letter, which he did and it was very very sweet) has Hep C and has recently come down with kidney failure. It's postponed an album that was supposed to debut last October and is greatly anticipated. This band has won numerous Grammy Awards. My suspicion has been that he is suffering the condition I'm describing in this blog. I've actually seen this band in concert and they are a favorite of our family, so this makes me sad.
Well, I think I, too am beginning to exhibit symptoms of this condition. According to the NIH, the symptoms are:
I think it's time to see my doctor. I've had one of the worst weeks of my life health-wise. I had a significant emotional event, which causes my illness to flare and my illness flaring causes me to have difficulty dealing with emotional events. Vicious cycle.
I'll keep you posted.
A famous rock star (who shall be left unnamed, but he comes from nearby town and visits here in the summer - my daughter met him, has a pic with him and asked him to write me a letter, which he did and it was very very sweet) has Hep C and has recently come down with kidney failure. It's postponed an album that was supposed to debut last October and is greatly anticipated. This band has won numerous Grammy Awards. My suspicion has been that he is suffering the condition I'm describing in this blog. I've actually seen this band in concert and they are a favorite of our family, so this makes me sad.
Well, I think I, too am beginning to exhibit symptoms of this condition. According to the NIH, the symptoms are:
- Difficulty breathing*
- Fatigue*
- Glomerulonephritis*
- Joint pain*
- Muscle pain*
- Purpura
- Raynaud's phenomenon
- Skin death
- Skin ulceration
I think it's time to see my doctor. I've had one of the worst weeks of my life health-wise. I had a significant emotional event, which causes my illness to flare and my illness flaring causes me to have difficulty dealing with emotional events. Vicious cycle.
I'll keep you posted.
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