Writing a book is so fun! I keep stumbling upon many websites that have much to offer. Today, I found a website of a young woman who has Lupus. She developed what is called "The Spoon Theory" which is a way of explaining what having a serious chronic illness feels like to the person who has it. Please check out the link and read her article. It is not only brilliant, but aptly describes how it feels to live with invisible chronic illnesses.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
Thursday, November 18, 2010
Monday, November 15, 2010
Couldn't pass this up!
I found a great website about invisible chronic illness while conducting research for my book. The organization is a Christian organization and it's mission is invisible chronic illness. Here's the link: http://invisibleillnessweek.com/
There are 30 questions about invisible illness on the site and I am going to answer them here for you:
There are 30 questions about invisible illness on the site and I am going to answer them here for you:
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Chronic Hepatitis C
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: Dec. 2005
4. The biggest adjustment I’ve had to make is: Not working full time; missing out on many important events and not having the income to help my kids through college as we had planned.
5. Most people assume:I am doing well as I do not appear ill.
6. The hardest part about mornings are: Everything is hard. Just getting out of the bed can be challenging as I have a lot of muscle, joint and body aches.
7. My favorite medical TV show is: I don't watch TV
8. A gadget I couldn’t live without is: My Amazon Kindle
9. The hardest part about nights are: Sleeping the whole night through without pain or nausea.
10. Each day I take 3 pills & vitamins.
11. Regarding alternative treatments I: Tried them in January 2010 and they made my condition worse, which happens 1% of the time in people with HCV.
12. If I had to choose between an invisible illness or visible I would choose: Visible, that's easy. People are more likely to offer compassion.
13. Regarding working and career: I have very limited energy, so my jobs are generally "work from home."
14. People would be surprised to know: That I have many days that I feel so terribly alone and like nobody understands.
15. The hardest thing to accept about my new reality has been: I am never going to get better, I will become more sick and there is little hope.
16. Something I never thought I could do with my illness that I did was: Spending more time alone, which is something that I now need/crave. I also went skydiving twice!
17. The commercials about my illness: I've not seen any.
18. Something I really miss doing since I was diagnosed is: Taking long, strenuous hikes; social events, visiting my kids.
19. It was really hard to have to give up: Working.
20. A new hobby I have taken up since my diagnosis is: Painting and writing poetry.
21. If I could have one day of feeling normal again I would: Hike all day, somewhere I've never hiked before that is known to be beautiful.
22. My illness has taught me: To accept my life as it is; it's in God's hands. And, to pace myself by listening to my body.
23. Want to know a secret? One thing people say that gets under my skin is: "you look great!"
24. But I love it when people: call, send notes or card, or best yet - offer to help me do something I find difficult to do by myself.
25. My favorite motto, quote that gets me through tough times is: "Don't let them take away who you are." For me this has dual meaning; "them" are unsupportive people and my disease.
26. When someone is diagnosed I’d like to tell them: I'm here for you 24/7 and I truly understand.
27. Something that has surprised me about living with an illness is: I am still alive and remain as productive as possible.
28. The nicest thing someone did for me when I wasn’t feeling well was: Loan me her cleaning lady for a day, who cleaned my entire house and my friend paid her. Second, I had a friend drive me to visit my daughter at the University, which is 2-1/2 - 3 hours away.
29.. The fact that you read this list makes me feel: Like you care.
Friday, November 12, 2010
Taking a break again
Thanks to all of you for your patience in following my blog. I plan to take a break for a few weeks and wanted to let you know. This is such a busy time of year, and in addition to the holidays four out of the six of us have December birthdays as well as our wedding anniversary. That coupled with shopping, having our daughter home from college and writing my book (which is going very well I must add), I need some time off from blogging so I'm taking a blogging LOA.
Health update: I have had peaks and valleys in my health but I'm quite thankful I got out two times this week with my dogs and into the woods. I shall leave you with this quote, which is one of my all time favorites:
There is a pleasure in the pathless woods;
There is a rapture on the lonely shore;
There is society, where none intrudes,
By the deep sea, and music in its roar:
I love not man the less, but Nature more - Lord Byron, Canto iv. Stanza 178
Health update: I have had peaks and valleys in my health but I'm quite thankful I got out two times this week with my dogs and into the woods. I shall leave you with this quote, which is one of my all time favorites:
There is a pleasure in the pathless woods;
There is a rapture on the lonely shore;
There is society, where none intrudes,
By the deep sea, and music in its roar:
I love not man the less, but Nature more - Lord Byron, Canto iv. Stanza 178
Friday, November 5, 2010
A big dose of HOPE
I heard from the hepatologist/liver transplant specialist's office today - they changed my appointment but it's only a matter of a few days. I spoke with a person yesterday who is a gastroenterologist; this particular medical specialty often takes care of people with HCV from diagnosis to standardized treatment. For example, when I was on Interferon/Ribavirin (2 courses, 1 24-week and 1 48-week) a gastroenterologist managed my care. The need to see a hepatologist arises when treatment fails and there are no further options - which describes me at this point in time.
He (an acquaintance, not really a friend) told me he recently returned from a HCV conference and believes there may be other alternatives for me. New clinical trials are showing great promise, but I've been excluded in the past because I am not treatment naive. "Treatment naive" is a research term used in a double-blind clinical trial where neither the researcher or the patient knows if they are receiving standard treatment or the new medications under experiment. If you have been through treatment, you are not "naive" to treatment; you know the symptoms the medication produce and therefore would be able to detect if you were on standardized vs. experimental treatment. However, when a prolonged study begins to show 100% cure rates in those receiving the experimental drug(s), it become unethical to withhold that option from those who are not treatment naive in order to save their life. He indicated this is indeed the case with a new treatment option consisting of 4 medications - two are the meds I already took and two are new medications.
The hepatologist will be aware of all this news, and the hepatology department at Henry Ford Hospital is world-renowned for their expertise in liver disease. The doctor I'm seeing is most likely a participating researcher in the current study OR she knows all about it and how to get a patient into the experimental group. I am suddenly feeling a ray....no a huge BEAM of hope for myself. I cannot reverse the damage done to my liver, but I know that getting rid of the virus would help me feel much better. I've gathered all necessary items for my appointment: slides from previous liver biopsies, CD-ROM's of CT scans and reports they requested me to bring along. Now I am darn excited to see her! There is HOPE! And darn it all - I am going to fight with all I've got. I want to see my children marry. I want to know my grandchildren. I want to grow old with my wonderful husband. Hope hope hope. I'm hoping like crazy over here!
He (an acquaintance, not really a friend) told me he recently returned from a HCV conference and believes there may be other alternatives for me. New clinical trials are showing great promise, but I've been excluded in the past because I am not treatment naive. "Treatment naive" is a research term used in a double-blind clinical trial where neither the researcher or the patient knows if they are receiving standard treatment or the new medications under experiment. If you have been through treatment, you are not "naive" to treatment; you know the symptoms the medication produce and therefore would be able to detect if you were on standardized vs. experimental treatment. However, when a prolonged study begins to show 100% cure rates in those receiving the experimental drug(s), it become unethical to withhold that option from those who are not treatment naive in order to save their life. He indicated this is indeed the case with a new treatment option consisting of 4 medications - two are the meds I already took and two are new medications.
The hepatologist will be aware of all this news, and the hepatology department at Henry Ford Hospital is world-renowned for their expertise in liver disease. The doctor I'm seeing is most likely a participating researcher in the current study OR she knows all about it and how to get a patient into the experimental group. I am suddenly feeling a ray....no a huge BEAM of hope for myself. I cannot reverse the damage done to my liver, but I know that getting rid of the virus would help me feel much better. I've gathered all necessary items for my appointment: slides from previous liver biopsies, CD-ROM's of CT scans and reports they requested me to bring along. Now I am darn excited to see her! There is HOPE! And darn it all - I am going to fight with all I've got. I want to see my children marry. I want to know my grandchildren. I want to grow old with my wonderful husband. Hope hope hope. I'm hoping like crazy over here!
Thursday, November 4, 2010
Grief and loss
If you've kept up on my posts you know that one, I haven't been writing much and two, I recently lost my dearest friend, who died in her sleep.
Grief is a strange and mysterious condition; there is no right or wrong way to grieve and each person reacts differently. This is certainly not the first time I've gone through the grieving process, but added to the other stressors in my life it is like the weight of the world. I'm not sure if I'm doing it well or not. I've cried - a lot, I've prayed - a lot, and I've been angry. Very angry. And who I am angry with is the family of my friend and the way they are reacting to and dealing with her shocking death and formal arrangements. They've included me quite a bit which has been an honor, and although it wears me out I know I must do this for my friend. What's making me angry is how little they knew her; how little they seemed to care and how laissez-faire they are handling things. It's as if they just want to get it done quickly and have this all behind them. All, with the exception of one sister who has been communicating with me on a daily basis and she feels the same as I. It's just so puzzling.
Last August I spent a week with my friend at her family cabin in Michigan. We were talking about our childhoods and I mentioned how few adult women I knew had what they would consider a wonderful childhood with a happy, loving family. My friend said, "I did. I cannot think of one negative thing in my childhood. My parents were wonderful to each other and to all of us; they were openly loving and supportive - I could not have asked for more." I was so happy to hear that as it seems as though most of my female friends could not say the same. And yet, her parents are both deceased and her family is terribly dysfunctional. So...having a solid foundation does not guarantee a happy, functional adulthood. I find this quite intriguing.
I recently read Elizabeth Edwards' book Resilience, and she's a woman who has been through a lot more than anyone I know. It seemed her good family foundation was the bedrock of her perseverance. I don't have any answers and I'm completely lost for an explanation of any of this stuff. I only know that I'm doing the best I can right now and the last 2 weeks have been extremely difficult.
One thing about my chronic illness that is salient in this discussion is this: I do not want to be treated like a baby and have people tiptoe around me as though I'm this fragile person about to break. People do that when you are ill and it is infuriating. While I'm sure they have good intentions...PLEASE do not do this to anyone you care about. Be transparent. Talk openly and honestly. Don't think you are protecting someone by keeping secrets. It all backfires and makes grieving much more difficult. Yes, I am sick but I can handle it.
And I miss my friend...terribly; I want her back. I was not ready for this and it's so hard to accept.
Sigh.
Grief is a strange and mysterious condition; there is no right or wrong way to grieve and each person reacts differently. This is certainly not the first time I've gone through the grieving process, but added to the other stressors in my life it is like the weight of the world. I'm not sure if I'm doing it well or not. I've cried - a lot, I've prayed - a lot, and I've been angry. Very angry. And who I am angry with is the family of my friend and the way they are reacting to and dealing with her shocking death and formal arrangements. They've included me quite a bit which has been an honor, and although it wears me out I know I must do this for my friend. What's making me angry is how little they knew her; how little they seemed to care and how laissez-faire they are handling things. It's as if they just want to get it done quickly and have this all behind them. All, with the exception of one sister who has been communicating with me on a daily basis and she feels the same as I. It's just so puzzling.
Last August I spent a week with my friend at her family cabin in Michigan. We were talking about our childhoods and I mentioned how few adult women I knew had what they would consider a wonderful childhood with a happy, loving family. My friend said, "I did. I cannot think of one negative thing in my childhood. My parents were wonderful to each other and to all of us; they were openly loving and supportive - I could not have asked for more." I was so happy to hear that as it seems as though most of my female friends could not say the same. And yet, her parents are both deceased and her family is terribly dysfunctional. So...having a solid foundation does not guarantee a happy, functional adulthood. I find this quite intriguing.
I recently read Elizabeth Edwards' book Resilience, and she's a woman who has been through a lot more than anyone I know. It seemed her good family foundation was the bedrock of her perseverance. I don't have any answers and I'm completely lost for an explanation of any of this stuff. I only know that I'm doing the best I can right now and the last 2 weeks have been extremely difficult.
One thing about my chronic illness that is salient in this discussion is this: I do not want to be treated like a baby and have people tiptoe around me as though I'm this fragile person about to break. People do that when you are ill and it is infuriating. While I'm sure they have good intentions...PLEASE do not do this to anyone you care about. Be transparent. Talk openly and honestly. Don't think you are protecting someone by keeping secrets. It all backfires and makes grieving much more difficult. Yes, I am sick but I can handle it.
And I miss my friend...terribly; I want her back. I was not ready for this and it's so hard to accept.
Sigh.
Thursday, October 28, 2010
Lots going on
I finally have my appointment to see the liver transplant specialist to be evaluated. My appointment is December 17. I am eager to get credible information and learn about my options. This appointment is simply a consultation; after this appointment, I will have to be admitted into the hospital for a few days of testing, including a liver biopsy (ugh) - one of the most painful of medical procedures. But it isn't my first so at least I know what to expect.
My life has been uncontrollably busy this past week for many reasons. I'm intimately involved in planning the funeral for my friend who died last week. Her funeral will not be held until Nov. 6 due to a myriad of circumstances. Also, each year our community has a Thanksgiving feast for the needy and those who are alone so they will have a lovely traditional meal with fellowship. We also deliver meals to the homebound. I've been the volunteer coordinator for this event for 2 years as this is something I am able to do. It involves fielding calls for volunteers and putting them into slots for the various volunteer needs that day. Our entire family participates for the duration of the meals (there are 2 seatings and it is held at a very beautiful place with china and fine linens to make guests feel extra special). It truly is a community event - churches, businesses and individuals all come together to pitch in and get it done. Top chefs in our area cook a delicious meal and I'm honored to help in my small way. We also got a new puppy, which has been fabulous. She's the cutest dog ever and her picture is shown on the right. I'm a dog lover and this is great therapy for me, but it involves a lot more attention and makes my days busier - but....the good far outweighs the bad. She's a keeper. And...yup, she has a china blue eye - rare in Border Collies.
So I am really off-balance. I have to pace myself to get through each week and it's been nearly impossible to do so due to circumstances. I have to help ensure that my friend has a funeral that is in alignment with her wishes, which is uncanny - she shared them with me in a casual conversation in August. And the other things are simply beyond my control. I also have to do the work of grieving, which is nothing you can control. It comes in waves and at most unexpected times. I am having a difficult time sleeping, which is very common for those with Hep C. I can fall asleep easily, but I've been sleeping only 4-5 hours a night and I need 9. So, whatever your personal beliefs I would ask for prayers and positive energy sent my way. It's been a very rough year and I will be very happy when we flip the calendar to 2011.
My life has been uncontrollably busy this past week for many reasons. I'm intimately involved in planning the funeral for my friend who died last week. Her funeral will not be held until Nov. 6 due to a myriad of circumstances. Also, each year our community has a Thanksgiving feast for the needy and those who are alone so they will have a lovely traditional meal with fellowship. We also deliver meals to the homebound. I've been the volunteer coordinator for this event for 2 years as this is something I am able to do. It involves fielding calls for volunteers and putting them into slots for the various volunteer needs that day. Our entire family participates for the duration of the meals (there are 2 seatings and it is held at a very beautiful place with china and fine linens to make guests feel extra special). It truly is a community event - churches, businesses and individuals all come together to pitch in and get it done. Top chefs in our area cook a delicious meal and I'm honored to help in my small way. We also got a new puppy, which has been fabulous. She's the cutest dog ever and her picture is shown on the right. I'm a dog lover and this is great therapy for me, but it involves a lot more attention and makes my days busier - but....the good far outweighs the bad. She's a keeper. And...yup, she has a china blue eye - rare in Border Collies.
So I am really off-balance. I have to pace myself to get through each week and it's been nearly impossible to do so due to circumstances. I have to help ensure that my friend has a funeral that is in alignment with her wishes, which is uncanny - she shared them with me in a casual conversation in August. And the other things are simply beyond my control. I also have to do the work of grieving, which is nothing you can control. It comes in waves and at most unexpected times. I am having a difficult time sleeping, which is very common for those with Hep C. I can fall asleep easily, but I've been sleeping only 4-5 hours a night and I need 9. So, whatever your personal beliefs I would ask for prayers and positive energy sent my way. It's been a very rough year and I will be very happy when we flip the calendar to 2011.
Wednesday, October 27, 2010
Silence
"In the end, we will remember not the words of our enemies, but the silence of our friends." Dr. Martin Luther King, Jr.
While reading for preparation in writing my book, I came across the quote above. I hit the nail on the head. One of the most difficult things in living with illness for me has been the loss of many friends and even a few family members. None of my friends ever said, "Hey Sue, we are not friends anymore", no nothing that obvious. The friendships simply faded away....slowly, until there was nothing left. "I never know when to call you - you might be resting" is a common concern. Plus...and I'm going to say it: it ain't easy being my friend sometimes. We may make a date to have lunch, go hiking in the woods...it doesn't matter, I'm likely to cancel. I listen to my body very closely, pace myself and if the timing is off, I cancel.
I'm coming up on 5 years since my diagnosis. My nurse case manager called me yesterday to say that everything was approved for me to go forward with a liver transplant workup and consultation. That is some scary stuff, but it's the only option left for me and I will explore the pros and cons.
For now, I am grieving the loss of my best friend, working on writing my book and trying to put one foot in front of the other. The gales of wind that brought 25 ft. swells to Lake Michigan yesterday seemed an appropriate metaphor for the way I am feeling now. Think about those you love and might be hurting; are you silent?
While reading for preparation in writing my book, I came across the quote above. I hit the nail on the head. One of the most difficult things in living with illness for me has been the loss of many friends and even a few family members. None of my friends ever said, "Hey Sue, we are not friends anymore", no nothing that obvious. The friendships simply faded away....slowly, until there was nothing left. "I never know when to call you - you might be resting" is a common concern. Plus...and I'm going to say it: it ain't easy being my friend sometimes. We may make a date to have lunch, go hiking in the woods...it doesn't matter, I'm likely to cancel. I listen to my body very closely, pace myself and if the timing is off, I cancel.
I'm coming up on 5 years since my diagnosis. My nurse case manager called me yesterday to say that everything was approved for me to go forward with a liver transplant workup and consultation. That is some scary stuff, but it's the only option left for me and I will explore the pros and cons.
For now, I am grieving the loss of my best friend, working on writing my book and trying to put one foot in front of the other. The gales of wind that brought 25 ft. swells to Lake Michigan yesterday seemed an appropriate metaphor for the way I am feeling now. Think about those you love and might be hurting; are you silent?
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