It's easy to get distracted with day to day life and forget what's important. It's also easy to take things for granted. Both are things I consciously work on as well as working on my spiritual self.
Our weekend has been great so far - our oldest son is a football coach and enjoyed a solid win in game 1 against a formidable opponent. In the big scheme of life, it might seem that sports are not really important but when a young man is working with youth and yearns to teach them not only a sport, but the greater lessons of life - sports is a great avenue. In sports, everyone is equal regardless of religion, social status or race. Teamwork and hard work are are lifelong skills. Character and discipline are also important life lessons. We're so proud of our son and his impact on young lives. He once said he could never choose an occupation in which he was not having an impact on the lives of others, particularly youth. Involvement in sports is not as trivial as it might seem at first blush; there is an opportunity to impact and change the course of young people's lives forever. Watching him out there in his element (as well as in the high school classroom) makes us beam with pride, as he treats his players with respect and dignity. And to see how much they love him back is the greatest reward of all.
We also moved our daughter into her new apartment. She is sharing it with 5 (yes 5!) other fine young ladies. Two are from India, one from Central America, one from Mexico and only one other Caucasian. We are looking forward to this experience for her as one roommate is devoutly Hindu and she is learning the importance of understanding, tolerance and respect for others. As a U of M alum myself, it is one of the greatest things about the university - it's diversity, which is obvious in every area of the campus. It is not unusual to stroll around campus and listen to the Indian students singing acapella in their native language, while a group of LGBT students stands in a show of unity while in another area of campus Orthodox Jews observe their religious practices of dress and fasting from sundown to sundown. Everyone fits in. It seems like a microcosm of what life should be, especially in America.
I find that even though I'm the mother, I often have much to learn from my own children. There is nothing that brings more satisfaction to my husband and I than watching our adult children blossom and fly...
We can't wait to see what lies ahead!
Saturday, August 28, 2010
Thursday, August 26, 2010
Words to help those who are healthy...
My son and his girlfriend arrived home safely and yes....she has giardia - the backpacker's worst enemy. She looked so pale and thin, I could see why my son was so concerned for her. They made the right decision to come home early.
Tomorrow I take my daughter to her new apartment in Ann Arbor to begin her sophomore year at the University of Michigan. All parents out there know how bittersweet this is, but it's what's is supposed to happen. I will certainly miss her immensely. She's had a job as the manager of the local ice cream shop for the last 4 summers and yesterday was her last day forever. She said "my days of scoopin' are done" as she plans to remain in A2 (A-squared, the common nickname for all of us U of M alums) next summer and complete an internship. She already has a job lined up as a research assistant for the fall term. She's making the most of her world-class education.
My husband and I have a couple of trips planned and although my health is definitely on the decline, I am looking forward to our time away. We don't schedule anything physically demanding and hope to get in a great deal of relaxation time.
I have a great resource for all people with Hepatitis C and their loved ones. It's called Caring Ambassadors Hepatitis C Choices (4th Edition) and it is the most comprehensive book about Hep C I've come across. I was reading it yesterday and came across this poignant statement which struck a chord from my own personal experience:
"Many patients noted that family and friends did not believe they were physically limited by HCV as they did not appear classically 'sick.' This led to accusations that HCV was not a "real" disease, like cancer or heart failure, and that instead the patient must be pretending to be ill."
I'ts sad, isn't it? I was once a bundle of energy and juggled numerous responsibilities well. I had a full-time job, four children, a home and full life. I now spend 65% of my time lying in bed and resting. And yet, I appear to be healthy. Yet...pathetically enough, I've been accused of using my I illness to get out of things I don't want to do. If any of you knew how many times I had missed out on things I really wanted to do because I was ill; of the many evenings lying here alone, crying because I was not able to attend important events or things that I sorely wished to atted you might understand. Please....do not judge a person's disability just by how they look. I appear healthy. Actually, more healthy than normal now that I am thin and have an elevated bilirubin, which makes my skin appear a bit tan - I look like the epitome of health. But I am far from that and while I do have days in which I feel well, most days are not so good. If you know someone who has an illness, call them, send them a card or note and let them know you care. It can be a very lonely life at times and sometimes that one call, card or note of caring can lift a person's spirits just when they need it.
Tomorrow I take my daughter to her new apartment in Ann Arbor to begin her sophomore year at the University of Michigan. All parents out there know how bittersweet this is, but it's what's is supposed to happen. I will certainly miss her immensely. She's had a job as the manager of the local ice cream shop for the last 4 summers and yesterday was her last day forever. She said "my days of scoopin' are done" as she plans to remain in A2 (A-squared, the common nickname for all of us U of M alums) next summer and complete an internship. She already has a job lined up as a research assistant for the fall term. She's making the most of her world-class education.
My husband and I have a couple of trips planned and although my health is definitely on the decline, I am looking forward to our time away. We don't schedule anything physically demanding and hope to get in a great deal of relaxation time.
I have a great resource for all people with Hepatitis C and their loved ones. It's called Caring Ambassadors Hepatitis C Choices (4th Edition) and it is the most comprehensive book about Hep C I've come across. I was reading it yesterday and came across this poignant statement which struck a chord from my own personal experience:
"Many patients noted that family and friends did not believe they were physically limited by HCV as they did not appear classically 'sick.' This led to accusations that HCV was not a "real" disease, like cancer or heart failure, and that instead the patient must be pretending to be ill."
I'ts sad, isn't it? I was once a bundle of energy and juggled numerous responsibilities well. I had a full-time job, four children, a home and full life. I now spend 65% of my time lying in bed and resting. And yet, I appear to be healthy. Yet...pathetically enough, I've been accused of using my I illness to get out of things I don't want to do. If any of you knew how many times I had missed out on things I really wanted to do because I was ill; of the many evenings lying here alone, crying because I was not able to attend important events or things that I sorely wished to atted you might understand. Please....do not judge a person's disability just by how they look. I appear healthy. Actually, more healthy than normal now that I am thin and have an elevated bilirubin, which makes my skin appear a bit tan - I look like the epitome of health. But I am far from that and while I do have days in which I feel well, most days are not so good. If you know someone who has an illness, call them, send them a card or note and let them know you care. It can be a very lonely life at times and sometimes that one call, card or note of caring can lift a person's spirits just when they need it.
Tuesday, August 24, 2010
Picking myself up
I've had one of the most stressful weeks of my entire life. I made a very difficult decision that will have a life-altering effect. This decision is final and there is no turning back. I've been reading a book about living with serious chronic illness, and I read the following passage last night. The author is talking about the pleasantry of people asking the simple question, "how are you?".....(an excerpt):
But unfortunately, as a disabled person I often feel deprived of conversation, , not about diagnosis or medical details, not as a complaint but rather, as a basic need to tell my story. The hard work of my everyday life is invisible to people who enjoy good health, because they have the very human propensity of taking their ease for granted. It's difficult to share with a healthy person such triumphs as walking around the block, or having a pain-free night. I also want to speak about how suffering has transformed me; illness is a school that yields surprising insights. ~ Marguerite Guzman Bouvard
I find that I prefer to be alone, and that when I'm with people I enjoy discussing rather deep subject matter. The latest fad in nail polish or tabloid story holds little interest for me (well, it never did but now I have even less tolerance for it). I want to get right to the heart of the matter and talk about things that are important. I feel compelled to announce,'I love you' when I am with a person I truly love and let them know how they have made a difference in my life.
The past 5 days have been incredibly difficult and I'm frazzled, worn-out and one step away from falling apart completely. My shell is cracked and everything inside is ready to spill out; only a thin membrane is holding everything in. Many big changes lie in the week ahead. My daughter heads back for her sophomore year of college. My son is returning home tomorrow (1 week early) from his hiking trip because his girlfriend became ill with giardia. The decision I made will begin to sink in. And life goes on...while I pick myself up and try not to break.
But unfortunately, as a disabled person I often feel deprived of conversation, , not about diagnosis or medical details, not as a complaint but rather, as a basic need to tell my story. The hard work of my everyday life is invisible to people who enjoy good health, because they have the very human propensity of taking their ease for granted. It's difficult to share with a healthy person such triumphs as walking around the block, or having a pain-free night. I also want to speak about how suffering has transformed me; illness is a school that yields surprising insights. ~ Marguerite Guzman Bouvard
I find that I prefer to be alone, and that when I'm with people I enjoy discussing rather deep subject matter. The latest fad in nail polish or tabloid story holds little interest for me (well, it never did but now I have even less tolerance for it). I want to get right to the heart of the matter and talk about things that are important. I feel compelled to announce,'I love you' when I am with a person I truly love and let them know how they have made a difference in my life.
The past 5 days have been incredibly difficult and I'm frazzled, worn-out and one step away from falling apart completely. My shell is cracked and everything inside is ready to spill out; only a thin membrane is holding everything in. Many big changes lie in the week ahead. My daughter heads back for her sophomore year of college. My son is returning home tomorrow (1 week early) from his hiking trip because his girlfriend became ill with giardia. The decision I made will begin to sink in. And life goes on...while I pick myself up and try not to break.
Saturday, August 21, 2010
Friday, August 20, 2010
The week is ending..
The end of the week is here, and it's been a bit of a challenge for me. My main problem has been pain management. I checked in with some folks on a Hep C forum and while not uncommon, not all people with Hep C have pain. I got pain from day 1. My case is quite unusual.
Most people with Hep C have it and do not know it; it generally takes 20-30 years for the liver to sustain enough damage to manifest symptoms. And even when these symptoms arise, they are usually subtle and the diagnosis is an "incidental" finding as people are not routinely screened for the virus. It's highly unusual to have acute symptoms. So here I am - once again, highly unusual. Go figure. (but most people who know me would say I AM highly unusual, something I take as a compliment).
I can state the date, place and time I became ill. I was home alone with my youngest daughter - then a freshman in high school, when I suddenly felt my heart begin racing super fast. I immediately got a severe headache - the worst in my life, and felt like I was going to pass out. I checked my pulse - it was around 200. I told my daughter to call 911 if I passed out and she looked at me as though I'd gone loony, but once she saw the expression on my face she knew it was no joke. I got down on the floor and I can't explain the feeling - I thought I was dying. I never passed out, but the whole ordeal was odd and I told my husband when he got home what had happened. I still wasn't feeling well and passed it off thinking I was coming down with something. This was in December 2005, and not wanting to ruin the holidays I just kept my "weird" symptoms to myself. But I kept getting sicker with body aches, fever, abdominal pan, headaches and overwhelming fatigue. I had a job with a great deal of responsibility and kept going to work, trying to hide how I was feeling. I told my husband something was wrong, but decided to wait until after the holidays to get checked. I knew that it was serious; I could just tell by the way I was feeling this was not the flu. My diagnosis came in January 2006.
I can honestly say I have not had one day since that time in which I could say I felt well. I don't think I'd recognize it anymore.
I made 2 lists this week: one was a list of all the things I am currently struggling with. Some are within my control, but most are not. The other list are the positive things in my life, and it was really long. I am grateful for the abundance of good things in my life and I need to focus on those. Some are: my wonderful spouse, the new church I've found that feels like "home" to me, the beauty of nature which has and always will be a great source of joy and inspiration, a few great friends and my two furry dogs who make my days so fun - even when I'm struggling. Laughter is great balm for the soul.
Soon a new week will arrive. My youngest leaves for college - her last summer home. My backpacking son will return (after a 5-week, 500 mile hike). My husband and I are taking a little vacation. September is my favorite month of the whole year; it always feels like a new beginning. Time marches on and we never know what lies ahead of us....all we can do it our best and not look back. I choose to look forward with hope.
Most people with Hep C have it and do not know it; it generally takes 20-30 years for the liver to sustain enough damage to manifest symptoms. And even when these symptoms arise, they are usually subtle and the diagnosis is an "incidental" finding as people are not routinely screened for the virus. It's highly unusual to have acute symptoms. So here I am - once again, highly unusual. Go figure. (but most people who know me would say I AM highly unusual, something I take as a compliment).
I can state the date, place and time I became ill. I was home alone with my youngest daughter - then a freshman in high school, when I suddenly felt my heart begin racing super fast. I immediately got a severe headache - the worst in my life, and felt like I was going to pass out. I checked my pulse - it was around 200. I told my daughter to call 911 if I passed out and she looked at me as though I'd gone loony, but once she saw the expression on my face she knew it was no joke. I got down on the floor and I can't explain the feeling - I thought I was dying. I never passed out, but the whole ordeal was odd and I told my husband when he got home what had happened. I still wasn't feeling well and passed it off thinking I was coming down with something. This was in December 2005, and not wanting to ruin the holidays I just kept my "weird" symptoms to myself. But I kept getting sicker with body aches, fever, abdominal pan, headaches and overwhelming fatigue. I had a job with a great deal of responsibility and kept going to work, trying to hide how I was feeling. I told my husband something was wrong, but decided to wait until after the holidays to get checked. I knew that it was serious; I could just tell by the way I was feeling this was not the flu. My diagnosis came in January 2006.
I can honestly say I have not had one day since that time in which I could say I felt well. I don't think I'd recognize it anymore.
I made 2 lists this week: one was a list of all the things I am currently struggling with. Some are within my control, but most are not. The other list are the positive things in my life, and it was really long. I am grateful for the abundance of good things in my life and I need to focus on those. Some are: my wonderful spouse, the new church I've found that feels like "home" to me, the beauty of nature which has and always will be a great source of joy and inspiration, a few great friends and my two furry dogs who make my days so fun - even when I'm struggling. Laughter is great balm for the soul.
Soon a new week will arrive. My youngest leaves for college - her last summer home. My backpacking son will return (after a 5-week, 500 mile hike). My husband and I are taking a little vacation. September is my favorite month of the whole year; it always feels like a new beginning. Time marches on and we never know what lies ahead of us....all we can do it our best and not look back. I choose to look forward with hope.
Wednesday, August 18, 2010
A new day
I went to bed super early and spent a couple hours battling an awful lot of pain. Whew! That takes a lot out of me. But....I did sleep really well and woke up feeling much better and hopeful.
I think my pity party is over.
I'm not going to go out and run a marathon today, but hoping to get a few things completed. Helping my daughter get packed and ready for her sophomore year of college. After that comes a quiet, peaceful house. I will miss her but this is the way life is supposed to work; kids should become independent and we are pleased with her progress.
My day is off to a good start (for me) and I thank those who prayed for me. I'm looking out at the blue sky, the gentle cool breeze and the water of the lake and thinking about the cycles of life, the ups and downs and still learning (at my age) how to navigate this crazy world we live in.
I think my pity party is over.
I'm not going to go out and run a marathon today, but hoping to get a few things completed. Helping my daughter get packed and ready for her sophomore year of college. After that comes a quiet, peaceful house. I will miss her but this is the way life is supposed to work; kids should become independent and we are pleased with her progress.
My day is off to a good start (for me) and I thank those who prayed for me. I'm looking out at the blue sky, the gentle cool breeze and the water of the lake and thinking about the cycles of life, the ups and downs and still learning (at my age) how to navigate this crazy world we live in.
Tuesday, August 17, 2010
August 17, 2010
I fell asleep right away last night and slept through the night, which was greatly needed.
I wish I could say I woke up feeling rested, but I didn't.
I think I am depressed.
Wait: I know I am depressed.
My husband and I talked a long time last night, about our lives, people, families and the challenges that lie ahead of us. It felt good to connect and for him to nod his head in understanding. Some of you might think I'm just a big 'ole whiner, but there are things going on in my life that I don't write here. I just can't - they are too personal and would be inappropriate to talk about others negatively behind their backs. You'll have to trust me when I say some of these things are HUGE. There are a couple, that if taken out of context and were the only things I was dealing with would cause a great deal of sadness, anxiety and stress for the healthiest among us. And...there are no answers.
Overwhelmed.
I simply have too many things for one person at one time and I don't know what to do or where to go. I have one friend who thinks I need to see a counselor, but I don't think it will help and she's forgetting one important thing: I am sick. I would probably cancel my appointment 50% of the time, which does not lend itself to building a therapeutic relationship. Plus, I don't know what I'd talk about. It's not like these are things I can "fix." They are just deeply painful and I have to find a way to let them go, but they feel too huge right now to be able to do that.
I'm isolating. I'm keeping my phone off. I'm not reaching out. I am staying home and crying pretty much all day long. I know this isn't good, but I don't know what else to do. I am certainly not going to start medicating myself and I can't drink alcohol so I have no choice but to feel the pain and somehow, someway walk through it. It just feels like more than one person can handle and I am almost at my breaking point. I feel so very alone, and for those of you who've felt this way, you know how painful it is.
I don't know what else to write.
I wish I could say I woke up feeling rested, but I didn't.
I think I am depressed.
Wait: I know I am depressed.
My husband and I talked a long time last night, about our lives, people, families and the challenges that lie ahead of us. It felt good to connect and for him to nod his head in understanding. Some of you might think I'm just a big 'ole whiner, but there are things going on in my life that I don't write here. I just can't - they are too personal and would be inappropriate to talk about others negatively behind their backs. You'll have to trust me when I say some of these things are HUGE. There are a couple, that if taken out of context and were the only things I was dealing with would cause a great deal of sadness, anxiety and stress for the healthiest among us. And...there are no answers.
Overwhelmed.
I simply have too many things for one person at one time and I don't know what to do or where to go. I have one friend who thinks I need to see a counselor, but I don't think it will help and she's forgetting one important thing: I am sick. I would probably cancel my appointment 50% of the time, which does not lend itself to building a therapeutic relationship. Plus, I don't know what I'd talk about. It's not like these are things I can "fix." They are just deeply painful and I have to find a way to let them go, but they feel too huge right now to be able to do that.
I'm isolating. I'm keeping my phone off. I'm not reaching out. I am staying home and crying pretty much all day long. I know this isn't good, but I don't know what else to do. I am certainly not going to start medicating myself and I can't drink alcohol so I have no choice but to feel the pain and somehow, someway walk through it. It just feels like more than one person can handle and I am almost at my breaking point. I feel so very alone, and for those of you who've felt this way, you know how painful it is.
I don't know what else to write.
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