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.
Thursday, February 17, 2011
Hepatitis C and emotional health
It's one thing to deal with large, emotional issues when one is healthy; we have the resources available within ourselves to think logically, draw upon our support network, go to work and forget about it for a spell and eventually resolve the issue. Move on. And perhaps God meets us there too (if that's what you believe).
In the wonderful & vastly comprehensive book Hepatitis C Choices, 4th Edition ( Tina M. St. John, MD and Lorren Sandt), every topic imaginable is covered for the person with HCV. On p. 341, they cite the results of a study of hundreds of HCV patients at a large clinic, which concluded that half of their patients reported "significant strain or actual loss of at least one relationship." 1 in 10 had lost complete contact with at least 1 person in their former close circle of friends. With this erosion of social support, stress and concern become magnified. Add that to dealing with feeling sick on a daily basis and there is a recipe for many emotional difficulties added to a body that is overtaxed and overburdened.
Well, this week was my week for some serious emotional havoc. It's slammed me down physically and I am crawling out. It's hard to pull out the reserves do deal with stress when you're barely able to get out of bed. Overload.
But the bright side is I'm a little better each day. And God is with me. Just praying that nothing bad happens for awhile; I need to get back to my version of "normal" where all I have to deal with is my illness and everything else is smooth. Is that even possible? I'd like to think it is.
In the wonderful & vastly comprehensive book Hepatitis C Choices, 4th Edition ( Tina M. St. John, MD and Lorren Sandt), every topic imaginable is covered for the person with HCV. On p. 341, they cite the results of a study of hundreds of HCV patients at a large clinic, which concluded that half of their patients reported "significant strain or actual loss of at least one relationship." 1 in 10 had lost complete contact with at least 1 person in their former close circle of friends. With this erosion of social support, stress and concern become magnified. Add that to dealing with feeling sick on a daily basis and there is a recipe for many emotional difficulties added to a body that is overtaxed and overburdened.
Well, this week was my week for some serious emotional havoc. It's slammed me down physically and I am crawling out. It's hard to pull out the reserves do deal with stress when you're barely able to get out of bed. Overload.
But the bright side is I'm a little better each day. And God is with me. Just praying that nothing bad happens for awhile; I need to get back to my version of "normal" where all I have to deal with is my illness and everything else is smooth. Is that even possible? I'd like to think it is.
Friday, February 11, 2011
Getting out, getting weird
I rarely go out. My major outings are to church (about twice a month at most) and the grocery store 3 blocks away. I just don't have the energy although I keep busy at home.
Before my illness I was Ms. Involved in the Community. I was the PTA president, was the "team mom" for football (7years) and basketball (5 years). I attended every sporting event, away and at home for all 4 kids. I may have missed a couple due to scheduling conflicts or illness, but I don't remember missing much. I went to every parent-teacher conference for all 4 kids, and volunteered regularly in their classrooms and for class parties or field trips. I was on two non-profit agency boards - secretary to each, and ran a 24-hour sexual assault program with a staff of 107 people. I feel tired just writing that, and I'm not trying to brag - it's simply a fact of how I lived my life - with gusto. And I loved every minute. I devoted my life to my family and things that really mattered to me.
Now....trying to find things I am able to do is a challenge, but I've managed to do so as best I can. I joined a philanthropic group of women who raise funds for local 501(c)3 organizations. All that's involved is attendance at a 1 hour meeting four times a year. And it just so happens the meeting is within walking distance of my house. So, I went to my first meeting last night.
Ugh.
I saw many people who I thought were "friends" - not great talk-every-day type of friends, but women I liked and spent a great deal of time with over the years at sporting events and school functions. Many I've known for 25 years or more. Last night was certainly an eye opening experience for me. I'd guess that 85% of the women I knew completely ignored me, sometimes blatantly. I waved at one I hadn't seen in a long time and she looked away and didn't wave back. I said "hi" to one who shoved a piece of paper at me and I asked "what is this?" and she said "its a ballot" and walked away. There were a few who hugged me and said they were happy to see me but barely recognized me because of the weight loss (almost 70 lbs. since July 2009) and commented on how much my daughter looks like me now that I am her size.
Today I talked to a closer friend who lost her son in a boating accident in 2009. She experiences the same thing when she enters a room. I think she is wise when she says that she and I represent the worst fears in people; to lose your health and die or to lose a child and folks simply don't know what to say or do. We make them uncomfortable.
This is so foreign to me; I've been a nurse since 1979 and I've been the one to tell many families that their loved one has died and have sat with them for hours providing comfort. I've taken care of gravely ill patients, especially in the ICU and I was trained in how to act and what to say so it's natural for me. If I saw me walking through the door, I'd be one of the first ones to run over and provide support. I have to remind myself that not everyone is like that; in fact most people are not. I hope those reading this post will think about this and how to approach people who make us uncomfortable due to illness, tragedy or deformity and think about how those people feel when you turn away; when you act as if you don't see them and leave them feeling invisible - as if they don't matter. Because they do matter and they have lessons to teach you.
Before my illness I was Ms. Involved in the Community. I was the PTA president, was the "team mom" for football (7years) and basketball (5 years). I attended every sporting event, away and at home for all 4 kids. I may have missed a couple due to scheduling conflicts or illness, but I don't remember missing much. I went to every parent-teacher conference for all 4 kids, and volunteered regularly in their classrooms and for class parties or field trips. I was on two non-profit agency boards - secretary to each, and ran a 24-hour sexual assault program with a staff of 107 people. I feel tired just writing that, and I'm not trying to brag - it's simply a fact of how I lived my life - with gusto. And I loved every minute. I devoted my life to my family and things that really mattered to me.
Now....trying to find things I am able to do is a challenge, but I've managed to do so as best I can. I joined a philanthropic group of women who raise funds for local 501(c)3 organizations. All that's involved is attendance at a 1 hour meeting four times a year. And it just so happens the meeting is within walking distance of my house. So, I went to my first meeting last night.
Ugh.
I saw many people who I thought were "friends" - not great talk-every-day type of friends, but women I liked and spent a great deal of time with over the years at sporting events and school functions. Many I've known for 25 years or more. Last night was certainly an eye opening experience for me. I'd guess that 85% of the women I knew completely ignored me, sometimes blatantly. I waved at one I hadn't seen in a long time and she looked away and didn't wave back. I said "hi" to one who shoved a piece of paper at me and I asked "what is this?" and she said "its a ballot" and walked away. There were a few who hugged me and said they were happy to see me but barely recognized me because of the weight loss (almost 70 lbs. since July 2009) and commented on how much my daughter looks like me now that I am her size.
Today I talked to a closer friend who lost her son in a boating accident in 2009. She experiences the same thing when she enters a room. I think she is wise when she says that she and I represent the worst fears in people; to lose your health and die or to lose a child and folks simply don't know what to say or do. We make them uncomfortable.
This is so foreign to me; I've been a nurse since 1979 and I've been the one to tell many families that their loved one has died and have sat with them for hours providing comfort. I've taken care of gravely ill patients, especially in the ICU and I was trained in how to act and what to say so it's natural for me. If I saw me walking through the door, I'd be one of the first ones to run over and provide support. I have to remind myself that not everyone is like that; in fact most people are not. I hope those reading this post will think about this and how to approach people who make us uncomfortable due to illness, tragedy or deformity and think about how those people feel when you turn away; when you act as if you don't see them and leave them feeling invisible - as if they don't matter. Because they do matter and they have lessons to teach you.
Wednesday, February 9, 2011
......my book
Since I haven't heard anything from the publisher regarding publication of my book on Invisible Chronic Illness (which I sent in early November), I decided to give them a call. After reading an article in Newsweek about the grim outlook for books lately it did make me wonder. For the first time ever, e-books, such as those for Kindle, Nook, etc. are outselling hard copies. Borders - our nation's second largest bookstore has filed for bankruptcy, and small independent bookstore owners are dropping like flies.
When I spoke with the man on the phone, he told me that with today's market my topic, although "very important and interesting" was not likely to bring sales to the company. Since they publish only books (not e-books), my manuscript was declined. He apologized for not getting back to me sooner. I'm bummed. I think the topic of invisible chronic illness is very important! Society views people differently when they have an obvious illness or disability than a person such as myself who looks fairly healthy.
Where to go now...I'm not sure. Any ideas anyone?
When I spoke with the man on the phone, he told me that with today's market my topic, although "very important and interesting" was not likely to bring sales to the company. Since they publish only books (not e-books), my manuscript was declined. He apologized for not getting back to me sooner. I'm bummed. I think the topic of invisible chronic illness is very important! Society views people differently when they have an obvious illness or disability than a person such as myself who looks fairly healthy.
Where to go now...I'm not sure. Any ideas anyone?
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.
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