Friday, February 4, 2011
I need to hear from you on the topic of stigma
Well, I finally got my computer fixed and returned working in tip-top shape. The whole concept of stigma has been rolling around in my head for awhile now. Since I've been diagnosed with Hep C, I've lost a few "friends" and there are family members who are not so compassionate. I can't help but wonder if I had another terminal disease (and not all Hep C patients are terminal - many go into remission but not me) such as cancer or a brain tumor or cardiac problems or lung disease, would they treat me the same? Am I treated differently than those with more "acceptable" illnesses? My gut feeling is yes, that I would have more understanding and more people would reach out but I don't know since I've never suffered any of the other diseases mentioned. Are there any of you out there who has a chronic, terminal condition or know of someone with the experience of another chronic, terminal illnesses that would allow you to make a comparison? I just don't have an answer.
Wednesday, January 19, 2011
It's about time.....
Hepatitis C is finally getting some traction in the media with the CDC and NIH showing some interest. Here's a link to a great article in Huffington Post:
http://www.huffingtonpost.com/2011/01/18/hepatitis-c-new-hope-for-_n_810204.html
Please understand I am aware of the new drugs and they would not work for me due to the fact I have a rare subtype. And, the Detroit Hospital they mention is participating in clinical trials, but none would be appropriate fore me for the same reason. So, while this article gives hope to many of you - and I am truly happy about this, there is little hope for anything new in the future for me.
http://www.huffingtonpost.com/2011/01/18/hepatitis-c-new-hope-for-_n_810204.html
Please understand I am aware of the new drugs and they would not work for me due to the fact I have a rare subtype. And, the Detroit Hospital they mention is participating in clinical trials, but none would be appropriate fore me for the same reason. So, while this article gives hope to many of you - and I am truly happy about this, there is little hope for anything new in the future for me.
Thursday, January 13, 2011
Beautiful thoughts on suffering and spirituality
I am not Catholic, but I have found great wisdom in the writings of the saints, so I often find myself reading things written by those of Catholic persuasion.
A friend sent this to me and it is written by a Catholic priest,
A friend sent this to me and it is written by a Catholic priest,
Fr. Antonin Gilbert Sertillanges, OP
"Man is an apprentice, pain is his master, no one knows himself until he has suffered." These words inspire admiration; but how many are prepared to accept the consequences? So laborious an apprenticeship would only be undertaken by one really determined to become a master craftsman, fully appreciative of self-knowledge as a sovereign good. But that, too, must first be learned.
Without sorrow one might perhaps be happy, but one would not be aware of it. What would such happiness amount to?
It does not suffice to endure suffering in order to acquire experience. This demands reflection about oneself and the essential conditions of life. With still greater reason, the utilization of experience is not thus acquired; it requires the tranquilizing of the soul in God: it takes love, without which suffering embitters and confuses the soul instead of enlightening it.
Suffering is an extreme remedy which either cures the ill or makes it worse, which strengthens or kills. Both the physician's prescription and his attendance are necessary. 'Unhappy is he,' says St. Bernard, 'who carries the cross of Jesus but who is not with Jesus.'...
We console a person by sympathizing with his grief; but especially by showing him its beauty.
As a nurse, I've devoted my life to the care of those who are suffering. And...at my age I've seen suffering in many forms, even my own before I became ill. In every instance, suffering forces introspection and thus, inward spiritual reflection. Prior to having Hep C, I would have said I'd not take back any of the suffering in my life as those were the experiences which helped me grow as a person in many ways, but most apparent is a deepening spiritual connection I felt with each instance, even at times, the suffering of others. I can't honestly say I am happy to have contracted Hepatitis C; it has caused immense growth and forces me to face all of my shortcomings. One can suffer well, as the writer indicated. But my current situation is tough. I don't want to suffer anymore. I don't want to die. I've had to think I may have to give up the dreams I had of growing old; time with my spouse, weddings, knowing my grandchildren. As Fr. Sertillanges stated, I don't want to become the embittered one. I want to realize my full potential within the limitations of my illness.
As a nurse, I've devoted my life to the care of those who are suffering. And...at my age I've seen suffering in many forms, even my own before I became ill. In every instance, suffering forces introspection and thus, inward spiritual reflection. Prior to having Hep C, I would have said I'd not take back any of the suffering in my life as those were the experiences which helped me grow as a person in many ways, but most apparent is a deepening spiritual connection I felt with each instance, even at times, the suffering of others. I can't honestly say I am happy to have contracted Hepatitis C; it has caused immense growth and forces me to face all of my shortcomings. One can suffer well, as the writer indicated. But my current situation is tough. I don't want to suffer anymore. I don't want to die. I've had to think I may have to give up the dreams I had of growing old; time with my spouse, weddings, knowing my grandchildren. As Fr. Sertillanges stated, I don't want to become the embittered one. I want to realize my full potential within the limitations of my illness.
Wednesday, January 12, 2011
Resolutions
I often wonder who makes New Year's resolutions. My feeling is that a "resolution" is an intimidating word, and often when we make one we find ourselves breaking the resolution in a short time ....then, feel like a failure. So I prefer to set yearly goals instead and I make sure to make them positive, achievable and something that benefits those I love. Plus, I don't make dozens - I keep it to 6 or less and they are usually rather big ideas.
I'm not sure how many people read the "Spoon Theory" post (scroll down) written by a woman suffering from fibromyalgia. The same principles apply to those with Hep C and many chronic illnesses. To sum it up, when you have a chronic illness, you wake up each morning with a limited amount of energy (gas) to accomplish your daily goals. With each activity, you are using up more gas and if you over-do, you'll find yourself on empty by mid-day. Conversely, if you pace yourself you may find yourself able to reach your goals for the day.
But there's a big catch: We cannot control everything that happens in a day and an event can occur that takes a LOT of our daily allotment of gas all at once. My daughter was involved in a horrible accident last week on her way back to college and we were up most of the night. She was 100% unharmed which was unbelievable. The driver was also not hurt, but the passenger in the back seat had glass shards in her face and was taken to the hospital. We thank God that all three girls were okay. These unforeseen things can understandably cause you to be empty at the beginning of the day!
So, getting back to resolutions (goals is the term I use) I'm trying to pace myself better so that I have energy for my spouse in particular, but also to keep more balance. The problem is that we can only control so much and another of my goals is to let things slide off my back. Negative emotional energy can drain me for up to 2 days. I can only control myself. And when you have an illness, it takes practice to not allow negativity or things people say to you zap your energy. This happened to me yesterday and ....
BAM!
What could have been a horribly negative experience, zapping my energy to zero I was able to keep my goal and take care of myself. The positive feeling I got from weathering what might have been an awful thing actually energized me and I slept well, waking up with a full tank.
I hope your tank is full too. Love yourself and don't let people's negativity get to you. That's the world we live in and take the high road, assess yourself and use positive self-talk and spend time doing things you love. That's my plan for today. God bless all of you who are out there with Hep C and suffering. I hope you find this blog helpful and we can share our journey together.
I'm not sure how many people read the "Spoon Theory" post (scroll down) written by a woman suffering from fibromyalgia. The same principles apply to those with Hep C and many chronic illnesses. To sum it up, when you have a chronic illness, you wake up each morning with a limited amount of energy (gas) to accomplish your daily goals. With each activity, you are using up more gas and if you over-do, you'll find yourself on empty by mid-day. Conversely, if you pace yourself you may find yourself able to reach your goals for the day.
But there's a big catch: We cannot control everything that happens in a day and an event can occur that takes a LOT of our daily allotment of gas all at once. My daughter was involved in a horrible accident last week on her way back to college and we were up most of the night. She was 100% unharmed which was unbelievable. The driver was also not hurt, but the passenger in the back seat had glass shards in her face and was taken to the hospital. We thank God that all three girls were okay. These unforeseen things can understandably cause you to be empty at the beginning of the day!
So, getting back to resolutions (goals is the term I use) I'm trying to pace myself better so that I have energy for my spouse in particular, but also to keep more balance. The problem is that we can only control so much and another of my goals is to let things slide off my back. Negative emotional energy can drain me for up to 2 days. I can only control myself. And when you have an illness, it takes practice to not allow negativity or things people say to you zap your energy. This happened to me yesterday and ....
BAM!
What could have been a horribly negative experience, zapping my energy to zero I was able to keep my goal and take care of myself. The positive feeling I got from weathering what might have been an awful thing actually energized me and I slept well, waking up with a full tank.
I hope your tank is full too. Love yourself and don't let people's negativity get to you. That's the world we live in and take the high road, assess yourself and use positive self-talk and spend time doing things you love. That's my plan for today. God bless all of you who are out there with Hep C and suffering. I hope you find this blog helpful and we can share our journey together.
Tuesday, January 11, 2011
Bone Pain
Before I get into my topic, I want you to scroll down the blog to the Spoon Theory blog and read the comments by PSPam. Wow! Finally, someone who really understands how Hep C effects your life!
Ok, to my subject for today. Many people on chemotherapy struggle with maintaining blood counts, as chemo destroys all cells - good & bad. Often, pretty much every element of a complete blood count is low - a condition called "pancytopenia." I experienced pancytopenia during the last 3 months of treatment in 2008 and my biggest challenge was my neutrophil count. Neutrophils comprise the largest part of our white blood count which is responsible for our immune system. My neutrophil count was so bad that my doctor had to give me a drug (injection) called Neupogen, which is also needed by many cancer patients. Neupogen stimulates the bone marrow to make more blood cells as most blood cells are formed in the marrow, particularly in the large bones such as the leg bones and hip bones. Many who receive this drug experience a great deal of bone pain. I have a friend who was on chemo for breast cancer and she remembers Neupogen as having the worst side effects than any other chemo drug she took. But it doesn't affect everyone the same way and I had seven injections - a little bone pain, but I felt better. Having a dangerously low neutrophil count makes a person feel very very sick and I was thankful for feeling a bit better.
Another blood component made in bone marrow are platelets (also called thrombocytes). Platelets are one of the factors in blood clotting. A normal platelet count is 200,000 - 400,000. Mine has been running around 90,000 which is typical of a person with my stage of liver disease. Therefore, my body has been trying like crazy to make more platelets and I've experienced a great deal of bone pain lately - much more than when I took Neupogen. My pain is located exclusively in my legs and it's a very difficult pain to describe. It's a deep, achy tired feeling; almost as if your bones were badly bruised.
Honestly, this dying slowly and suffering is for the birds. I have very little hope that anything will change in the next 5 years; I've been dealing with this for 5 years already.
Be grateful, be very very grateful for your health - if you have it.
Ok, to my subject for today. Many people on chemotherapy struggle with maintaining blood counts, as chemo destroys all cells - good & bad. Often, pretty much every element of a complete blood count is low - a condition called "pancytopenia." I experienced pancytopenia during the last 3 months of treatment in 2008 and my biggest challenge was my neutrophil count. Neutrophils comprise the largest part of our white blood count which is responsible for our immune system. My neutrophil count was so bad that my doctor had to give me a drug (injection) called Neupogen, which is also needed by many cancer patients. Neupogen stimulates the bone marrow to make more blood cells as most blood cells are formed in the marrow, particularly in the large bones such as the leg bones and hip bones. Many who receive this drug experience a great deal of bone pain. I have a friend who was on chemo for breast cancer and she remembers Neupogen as having the worst side effects than any other chemo drug she took. But it doesn't affect everyone the same way and I had seven injections - a little bone pain, but I felt better. Having a dangerously low neutrophil count makes a person feel very very sick and I was thankful for feeling a bit better.
Another blood component made in bone marrow are platelets (also called thrombocytes). Platelets are one of the factors in blood clotting. A normal platelet count is 200,000 - 400,000. Mine has been running around 90,000 which is typical of a person with my stage of liver disease. Therefore, my body has been trying like crazy to make more platelets and I've experienced a great deal of bone pain lately - much more than when I took Neupogen. My pain is located exclusively in my legs and it's a very difficult pain to describe. It's a deep, achy tired feeling; almost as if your bones were badly bruised.
Honestly, this dying slowly and suffering is for the birds. I have very little hope that anything will change in the next 5 years; I've been dealing with this for 5 years already.
Be grateful, be very very grateful for your health - if you have it.
Friday, January 7, 2011
Holidays for people with Hep C (or any chronic illness)
I want to begin by saying I truly love Christmas. My favorite things are cooking, baking those once-a-year special cookies, having my family together and giving gifts. I think many people expect too much from the holidays; they crave that feeling we had as children to wake up on Christmas morning and find magic. Those days are over, but for me (and I suspect for you as well), the best part is giving gifts that delight a person you love. For me that's as satisfying - even more so - than trying to recover the Christmas magic we experienced in our childhood.
But Christmas is also tough and pressured. Single parents alone on Christmas day because their children are at the other parent's home; families ravaged by poverty, addictions, a loved one in prison and those who have no homes or families to go to. I think and pray for those for whom Christmas seems to bring a sense of sadness and grief; and...I try to do something nice for people I know who are struggling.
For a person with Hep C, there is an extra burden, especially for us who are parents. We dream of this idyllic Christmas in which everything goes perfectly and we (at least I) tend to forget I am ill as I plan for the holidays. After seeing the specialist on the 21st I was reeling, and I knew I had to step it up - a lot - to get the outcome I longed for. Those of you with grown children who are out on their own will understand of what I speak; kids move away, become adults and while they all love one another deeply, they may not get along as well as when they were growing up. They may not have much in common, and we parents tend to forget they may not be best friends. Don't get me wrong; my children have a deep love and connection and would do anything for each other. But it's not all chocolates and roses - they have disagreements, differing world views and have grown apart.
I think when we are ill, we put too much pressure on ourselves to make things special and fun. When our illness is terminal, time seems so precious and we want it to be a series of magic "Hallmark" moments. I am no longer able to go out sledding, go to the movies or enjoy a nice hike in the woods which makes it a challenge to find things to do as a family. This year I planned a scavenger hunt, we held a pool tournament and watched old family movies and a few new releases. I made that "wow" Christmas dinner, I put extra thought and love into gifts and woke up every morning determined to put on my best "I feel good" facade. And, I pulled it off.....at great cost to myself.
Did everything go well? NO! Our kids fought - one disagreement was especially bad and will never be forgotten I'm afraid. My relationship with one child has been permanently scarred by my illness (this child was living at home through both rounds of chemo), and displays a great deal of hostility toward me and the energy I expended wore me out. I am still not recovered, and I've cried a bit every day over what a failure the holidays were. Yes, there were a few wonderful, loving moments but overall it was horrible, and I am not exaggerating. It was probably the worst Christmas I've had since I've been a mother. I simply tried too hard to force something that wasn't natural and there's always the big elephant in the room: MOM IS DYING OF HEPATITIS C, which becomes more obvious as I've lost so much weight I hardly recognize myself and my fatigue is hard to hide when black encircles my eyes on a continual basis.
I've always been an over-achiever and have high expectations of myself, so it's hard not to feel that I've been a failure. I'm really struggling, but I know what I need to do and I'm doing my best. I happily said goodbye to 2010 (one of my most difficult years) and I'm hoping 2011 is an improvement. And, if there are any of you Heppers out there who have holiday suggestions, I'd be glad to hear them. I've put Christmas behind me and I'm moving forward.
But Christmas is also tough and pressured. Single parents alone on Christmas day because their children are at the other parent's home; families ravaged by poverty, addictions, a loved one in prison and those who have no homes or families to go to. I think and pray for those for whom Christmas seems to bring a sense of sadness and grief; and...I try to do something nice for people I know who are struggling.
For a person with Hep C, there is an extra burden, especially for us who are parents. We dream of this idyllic Christmas in which everything goes perfectly and we (at least I) tend to forget I am ill as I plan for the holidays. After seeing the specialist on the 21st I was reeling, and I knew I had to step it up - a lot - to get the outcome I longed for. Those of you with grown children who are out on their own will understand of what I speak; kids move away, become adults and while they all love one another deeply, they may not get along as well as when they were growing up. They may not have much in common, and we parents tend to forget they may not be best friends. Don't get me wrong; my children have a deep love and connection and would do anything for each other. But it's not all chocolates and roses - they have disagreements, differing world views and have grown apart.
I think when we are ill, we put too much pressure on ourselves to make things special and fun. When our illness is terminal, time seems so precious and we want it to be a series of magic "Hallmark" moments. I am no longer able to go out sledding, go to the movies or enjoy a nice hike in the woods which makes it a challenge to find things to do as a family. This year I planned a scavenger hunt, we held a pool tournament and watched old family movies and a few new releases. I made that "wow" Christmas dinner, I put extra thought and love into gifts and woke up every morning determined to put on my best "I feel good" facade. And, I pulled it off.....at great cost to myself.
Did everything go well? NO! Our kids fought - one disagreement was especially bad and will never be forgotten I'm afraid. My relationship with one child has been permanently scarred by my illness (this child was living at home through both rounds of chemo), and displays a great deal of hostility toward me and the energy I expended wore me out. I am still not recovered, and I've cried a bit every day over what a failure the holidays were. Yes, there were a few wonderful, loving moments but overall it was horrible, and I am not exaggerating. It was probably the worst Christmas I've had since I've been a mother. I simply tried too hard to force something that wasn't natural and there's always the big elephant in the room: MOM IS DYING OF HEPATITIS C, which becomes more obvious as I've lost so much weight I hardly recognize myself and my fatigue is hard to hide when black encircles my eyes on a continual basis.
I've always been an over-achiever and have high expectations of myself, so it's hard not to feel that I've been a failure. I'm really struggling, but I know what I need to do and I'm doing my best. I happily said goodbye to 2010 (one of my most difficult years) and I'm hoping 2011 is an improvement. And, if there are any of you Heppers out there who have holiday suggestions, I'd be glad to hear them. I've put Christmas behind me and I'm moving forward.
Thursday, December 23, 2010
My visit with the specialist
I traveled to Detroit Tuesday to see the hepatologist & transplant surgeon. There really wasn't any new news. I am in stage IV (worst stage) liver disease and in level A in regard to transplant (lowest level; it goes from A-C). This means a transplant is not imminently needed. I also learned that I will not continue to worsen (in terms of how I feel) at the pace I have over the past 5 years. That was probably the best news to report. The worst news was that I will never feel well again. She predicted a 10-year lifespan if I have a transplant. Without transplant it's probably more like 5 years. There are no new medications for me and none on the immediate horizon due to my having genotype 3a. All of my current symptoms are commensurate with the level of my disease, although there are 3 symptoms that could be from something else and she feels it's best not to assume everything is related to Hep C. So, in January I will have to go into the hospital for three tests to rule out something else that might cause these symptoms to manifest. She really didn't offer me much hope.
My family is ecstatic to learn I might live 10 more years! I have to admit that I would love to see my children marry (at least a couple) and possibly meet a grandchild or two, but I am not as overjoyed as they are because I know what my daily life is like. My quality of life is quite poor; if I were to rank it on the 0-10 scale (0 = no quality, 10= I feel perfect every day) I would give it a 4-5. That's not an easy future to face, and I alone have to face it. My wonderful spouse tries as hard as he can and my kids do too, but they don't have the illness I feel every minute I am awake.
There was another thing in this consultation that really bothered me. I am not sure I can convey it in a manner you would understand. Normally, when you see your doctor, s/he pushes down on your liver area - right below the right ribcage - and asks you to take a deep breath.
when the lungs inflate, they push the liver down so it can be palpated by the doctor or nurse. In a healthy person, very little is felt by the doctor as the liver is squishy and smooth. When I took my deep breath, I could feel my liver hit her fingers - HARD - like a cha-chunk, hitting a brick wall. She let up a bit and I could feel my liver slide under her hand. It was hard as a rock. It didn't hurt, but to say it was a very unpleasant sensation would be an understatement. It's kinda haunting and feels like my body is betraying me.
Oh well. It's almost Christmas and all of our kids will be home tomorrow for 4 days. They are all staying here and I've been working on several things to make their visit fun. I will do my best to suck up my illness and keep a good fake "full of cheer" going. I know it's okay to be myself, but ultimately I want my kids to remember me favorably and feel like I tried my best. Happy Holidays to all!
My family is ecstatic to learn I might live 10 more years! I have to admit that I would love to see my children marry (at least a couple) and possibly meet a grandchild or two, but I am not as overjoyed as they are because I know what my daily life is like. My quality of life is quite poor; if I were to rank it on the 0-10 scale (0 = no quality, 10= I feel perfect every day) I would give it a 4-5. That's not an easy future to face, and I alone have to face it. My wonderful spouse tries as hard as he can and my kids do too, but they don't have the illness I feel every minute I am awake.
There was another thing in this consultation that really bothered me. I am not sure I can convey it in a manner you would understand. Normally, when you see your doctor, s/he pushes down on your liver area - right below the right ribcage - and asks you to take a deep breath.
when the lungs inflate, they push the liver down so it can be palpated by the doctor or nurse. In a healthy person, very little is felt by the doctor as the liver is squishy and smooth. When I took my deep breath, I could feel my liver hit her fingers - HARD - like a cha-chunk, hitting a brick wall. She let up a bit and I could feel my liver slide under her hand. It was hard as a rock. It didn't hurt, but to say it was a very unpleasant sensation would be an understatement. It's kinda haunting and feels like my body is betraying me.
Oh well. It's almost Christmas and all of our kids will be home tomorrow for 4 days. They are all staying here and I've been working on several things to make their visit fun. I will do my best to suck up my illness and keep a good fake "full of cheer" going. I know it's okay to be myself, but ultimately I want my kids to remember me favorably and feel like I tried my best. Happy Holidays to all!
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