A blog that I really enjoy is called Warning: Schematic Inaccurate. Today the post was on 15 things that you like about yourself (see her original post). I thought the idea was terrific. We all spend so much time focusing on the negatives, what a treat to celebrate the positives. So I am going to list my 15 favorite things about myself and I hope you will comment and add your favorite things about you. Let's all take a moment to honor who we are and revel in something nice about ourselves for a change.
My favorite things about me:
1. I a very kind and compassionate person.
2. I have a good sense of humor, especially about myself.
3. I am a survivor, I may get knocked down, but I don't stay there!
4. I find people interesting and enjoy talking to almost anyone.
5. I have terrific nails.
6. I am intelligent and thoughtful.
7. I can eat almost anything I want and not really gain weight.
8. I have striking red hair, not my own anymore but thanks to my wonderful colorist you would never know the difference!
9. I am a good friend and good listener.
10. I am a good daughter and care-giver to my mother.
11. I can see the beauty in others (inside and out) and give compliments freely.
12. I am not fake and I try not to lie.
13. I am encouraging and supportive to others, as they have been to me.
14. I enjoy getting up in front of people and have enjoyed both acting and public speaking in life.
15. I am always willing to learn something new.
What do you like about YOU? I really want to know. . .
Friday, October 24, 2008
Thursday, October 23, 2008
My Arch Enemy Makes A Return
PAIN!! It's back--not a surprise, but certainly not a thrill either. I am doing my best to cope. I am using the relaxation techniques I have been taught, using positive self-talk and distracting myself with good things as much as possible.
Tomorrow I will call the pain management doctor, who will no doubt be skeptical that "such a small drop in dosage would increase your pain". I will carefully explain to him what is going on, that I felt I should call before the pain got out of control, before I had to interrupt his weekend. He will hem and haw and eventually come up with a game plan. I will be exhausted before the call ends and feel like someone wrung me out physically and emotionally.
It all comes back to balance--trying to balance the pain with being able to function. Trying to balance having a life with chronic illness that involves more than medication, doctors appointments and prescriptions. Trying to live an authentic life, one that is true to who I really am, without being whiny or pitying. Trying, once again, to get others to understand that it isn't a choice, that we all do the best we can each day. Trying to balance caring for my mom, who is also ill, with caring for myself.
I would love to hear your feedback. How do you balance your lives? How have you gotten through, either to doctors, friends, loved ones or strangers? What coping mechanisms do you use for your pain, fatigue and the endless other symptoms we all live with?
For more information I have attached links from the New England Journal of Medicine on each candidates stand on health care:
For John McCain
For Barack Obama
Unfortunately, these articles point out what I have been saying all along, neither candidate has a sufficient answer to the health care crisis. Until we fix our broken system, I don't think anyone will.
Tomorrow I will call the pain management doctor, who will no doubt be skeptical that "such a small drop in dosage would increase your pain". I will carefully explain to him what is going on, that I felt I should call before the pain got out of control, before I had to interrupt his weekend. He will hem and haw and eventually come up with a game plan. I will be exhausted before the call ends and feel like someone wrung me out physically and emotionally.
It all comes back to balance--trying to balance the pain with being able to function. Trying to balance having a life with chronic illness that involves more than medication, doctors appointments and prescriptions. Trying to live an authentic life, one that is true to who I really am, without being whiny or pitying. Trying, once again, to get others to understand that it isn't a choice, that we all do the best we can each day. Trying to balance caring for my mom, who is also ill, with caring for myself.
I would love to hear your feedback. How do you balance your lives? How have you gotten through, either to doctors, friends, loved ones or strangers? What coping mechanisms do you use for your pain, fatigue and the endless other symptoms we all live with?
For more information I have attached links from the New England Journal of Medicine on each candidates stand on health care:
For John McCain
For Barack Obama
Unfortunately, these articles point out what I have been saying all along, neither candidate has a sufficient answer to the health care crisis. Until we fix our broken system, I don't think anyone will.
Wednesday, October 22, 2008
The Lighter Side
I have previously confessed my enjoyment with 'Dancing With The Stars'. I have to admit I was looking forward to it last night more than usual. With dropping on my medication on my mind, I wanted something fun and easy to watch. I find that when I get out of my own head for a little while, whether I use relaxation methods, hobbies or even just taking time to enjoy a TV show I like, it helps me to focus on things outside of the pain or fatigue of my illness. It gives me a 'vacation from myself' for a few moments and reminds me there is more to life than chronic illness.
Last night however, I did get annoyed that Cloris is STILL on the show while people who are actually dancing are being sent home. I admire Cloris Leachman, the woman is 82 years old and is trying to dance for goodness sake--that's admirable. But, I think it is unfair to keep someone on the show just for that reason. Week after week other couples have been sent packing, couples who may not be the best dancers, but who were at least DANCING! I hope the producers and the audience will wake up soon, we are half way through this season and it is time for people who have talent to step up and for those who don't to go home.
Last night however, I did get annoyed that Cloris is STILL on the show while people who are actually dancing are being sent home. I admire Cloris Leachman, the woman is 82 years old and is trying to dance for goodness sake--that's admirable. But, I think it is unfair to keep someone on the show just for that reason. Week after week other couples have been sent packing, couples who may not be the best dancers, but who were at least DANCING! I hope the producers and the audience will wake up soon, we are half way through this season and it is time for people who have talent to step up and for those who don't to go home.
Tuesday, October 21, 2008
Without Answers
I had my appointment with the infectious disease doctor today. Luckily, some of the really bad things that could be wrong with me were negative. That's the good news. The bad news is that we still don't know what IS wrong. That means more blood tests and some CT scans next week. The doctor will be away until next Tuesday, so she has her nurse looking for some results and making sure to get those to internist if they need to be dealt with before her return. I am impressed with the fact that she isn't giving up and is trying to find answers.
She is going away to a medical conference on diabetic ulcers. She told me this because we were talking about doctors and how they like to deal with the "sexy" or "exciting-high profile" things-- like in her field-- anthrax, or some such seminar. She said she likes to learn things that help people in the day to day. By going to conferences such as this one, she has been able to help people avoid amputation and have a better quality of life. I was shocked to hear a doctor realize the importance of those things. She understood completely how many doctors don't want to deal with chronic illness patients because we don't provide easy answers, sometimes there aren't answers and it isn't all exciting or worthy of publication. The fact that despite that, she wants to help, wants to see the quality of my life improve, really touched me. By the way, she works at one of the top hospitals in the country, so it isn't like she couldn't reach for those other areas of study. In fact, I would guess she would be held in more esteem by some for doing that, but she wants to help her patients. It is heartening to see doctors like her still practicing, because I have seen too many on the other side of line.
Tonight will be my first drop in pain medication and I don't know what to expect. I am hoping for the best, but prepared for the worst. I have received some wonderful support from the on-line community, which is so uplifting. Thanks for caring and for taking the time to let me know you are there with me.
She is going away to a medical conference on diabetic ulcers. She told me this because we were talking about doctors and how they like to deal with the "sexy" or "exciting-high profile" things-- like in her field-- anthrax, or some such seminar. She said she likes to learn things that help people in the day to day. By going to conferences such as this one, she has been able to help people avoid amputation and have a better quality of life. I was shocked to hear a doctor realize the importance of those things. She understood completely how many doctors don't want to deal with chronic illness patients because we don't provide easy answers, sometimes there aren't answers and it isn't all exciting or worthy of publication. The fact that despite that, she wants to help, wants to see the quality of my life improve, really touched me. By the way, she works at one of the top hospitals in the country, so it isn't like she couldn't reach for those other areas of study. In fact, I would guess she would be held in more esteem by some for doing that, but she wants to help her patients. It is heartening to see doctors like her still practicing, because I have seen too many on the other side of line.
Tonight will be my first drop in pain medication and I don't know what to expect. I am hoping for the best, but prepared for the worst. I have received some wonderful support from the on-line community, which is so uplifting. Thanks for caring and for taking the time to let me know you are there with me.
Monday, October 20, 2008
Rough Times Ahead
For many of us with chronic illness, chronic pain goes hand in hand. I, unfortunately, fall into this category myself. For many years I resisted the idea of pain medication and was able to function without needing it. During the last four years, as I became increasingly ill with more things, especially chronic pancreatitis, it became clear that I had to change my way of thinking on the matter of pain medication. I went through 2005 with more time spent in the hospital that year than home, mostly because I wasn't on pain management. Finally during a six week hospitalization around this time last year, I was sent home with medication. The experience was so bad I don't even want to recount it here. I wasn't given the appropriate medication, the correct dosages or any sort of support from a physician to monitor me. This all necessitated a move out of state to find competent medical care.
Beginning in January of this year I started seeing a good doctor where I moved, who not only finally got the pain under control, but carefully monitored me and helped me to finally get control of my life back. The approach in his office is multidisciplinary, meaning I am also seeing someone who works with me on stress reduction and alternative ways to manage pain, such as relaxation techniques, guided imagery and biofeedback. To say it has been a long, scary and painful road back to myself would be the understatement of my life.
Today my doctor and I met for our regularly scheduled appointment and he said the thing I had been fearing most, "we need to start trying to cut back on some of medications". I know he knows what he is doing, that he has my best interests at heart and that he will be there to support me. I know all these things logically, but emotionally is another thing entirely. Emotionally I am frightened of going through pain, withdrawal and the whole terrible upheaval that had been my life prior to this hiatus. I know that thinking positively is the best cure for the fear, but the pain and the fear are so fresh in my memory that at moments they overwhelm my logical side. I fought so hard to get back to where I am now, which isn't anywhere near where I wish I was, but still compared to where I was a year ago, it is miraculous. I don't EVER want to go back to the pain, the withdrawal symptoms, the lack of concerned medical care. I didn't uproot my whole life, and that of my mother with me, to go backwards.
I know logically that this doctor isn't like the other ones. He does listen. He is actually available when you call, and if for any reason he isn't, there are other doctors available through the practice 24/7. The first "pain management" specialist I saw was in two days a week and not available at all in between, so if you had a problem, you suffered until you could reach him. This doctor isn't him, and I know that. But I still have fear.
I write this not to scare anyone else who may be needing pain management, without a doubt getting the help I needed was the best thing I ever did. I wish the process had been simpler, so the fear wouldn't be so great. I write because I know that many of you out there understand. If you haven't experienced it personally, you have watched someone you love go through it. I write because giving a voice to my fear takes away some of its power. I write because I always want to be honest about where I am at and what living with chronic illness is like, even the parts that aren't pretty and upbeat. I want to be true to myself and to those who read this.
So, as I head into my scary time, I am using each one of you as my imaginary cheerleaders. I think of all we go through each day and all we accomplish despite the obstacles we face. I promise to use the techniques and self care I have espoused to you, taking care of myself as I head into this. I ask for your prayers, support and good wishes that things will much more smoothly than I am anticipating, and that this 'bogeyman of fear' will be banished quickly and permanently.
Tomorrow I head back to the infectious disease doctor for test results that will point either to a problem in that area or possibly back to the adrenal insufficiency to explain the fevers, fatigue, diarrhea, pain, etc. . . that I have been suffering from. Soon I will have the biopsy on my thyroid that will help determine what is up with the nodules. Each day will be a new worry, but hopefully also a new answer. During times like these, it is sometimes tough to remember that the bad times never last forever.
Beginning in January of this year I started seeing a good doctor where I moved, who not only finally got the pain under control, but carefully monitored me and helped me to finally get control of my life back. The approach in his office is multidisciplinary, meaning I am also seeing someone who works with me on stress reduction and alternative ways to manage pain, such as relaxation techniques, guided imagery and biofeedback. To say it has been a long, scary and painful road back to myself would be the understatement of my life.
Today my doctor and I met for our regularly scheduled appointment and he said the thing I had been fearing most, "we need to start trying to cut back on some of medications". I know he knows what he is doing, that he has my best interests at heart and that he will be there to support me. I know all these things logically, but emotionally is another thing entirely. Emotionally I am frightened of going through pain, withdrawal and the whole terrible upheaval that had been my life prior to this hiatus. I know that thinking positively is the best cure for the fear, but the pain and the fear are so fresh in my memory that at moments they overwhelm my logical side. I fought so hard to get back to where I am now, which isn't anywhere near where I wish I was, but still compared to where I was a year ago, it is miraculous. I don't EVER want to go back to the pain, the withdrawal symptoms, the lack of concerned medical care. I didn't uproot my whole life, and that of my mother with me, to go backwards.
I know logically that this doctor isn't like the other ones. He does listen. He is actually available when you call, and if for any reason he isn't, there are other doctors available through the practice 24/7. The first "pain management" specialist I saw was in two days a week and not available at all in between, so if you had a problem, you suffered until you could reach him. This doctor isn't him, and I know that. But I still have fear.
I write this not to scare anyone else who may be needing pain management, without a doubt getting the help I needed was the best thing I ever did. I wish the process had been simpler, so the fear wouldn't be so great. I write because I know that many of you out there understand. If you haven't experienced it personally, you have watched someone you love go through it. I write because giving a voice to my fear takes away some of its power. I write because I always want to be honest about where I am at and what living with chronic illness is like, even the parts that aren't pretty and upbeat. I want to be true to myself and to those who read this.
So, as I head into my scary time, I am using each one of you as my imaginary cheerleaders. I think of all we go through each day and all we accomplish despite the obstacles we face. I promise to use the techniques and self care I have espoused to you, taking care of myself as I head into this. I ask for your prayers, support and good wishes that things will much more smoothly than I am anticipating, and that this 'bogeyman of fear' will be banished quickly and permanently.
Tomorrow I head back to the infectious disease doctor for test results that will point either to a problem in that area or possibly back to the adrenal insufficiency to explain the fevers, fatigue, diarrhea, pain, etc. . . that I have been suffering from. Soon I will have the biopsy on my thyroid that will help determine what is up with the nodules. Each day will be a new worry, but hopefully also a new answer. During times like these, it is sometimes tough to remember that the bad times never last forever.
Saturday, October 18, 2008
Project Runway
Okay, I know I am a little late in posting on this, but I LOVE Project Runway and this season has been no exception. I admit I held my breath a little during the finale, not sure who would win. This is the first time the contestant I wanted to win did --Yea Leanne! I really thought Korto was incredibly talented as well, and I am sure she will go far in the fashion world, despite finishing second. As for Kenley, her attitude certainly didn't endear her to me, but I also felt she fell short as a designer. For me, her looks were too similar and too out there.
I discovered Project Runway when it was already several seasons on the air. I was confined to bed during a flare and there was a marathon of one of the past seasons on. I started to watch and got hooked quickly. Although I don't sew, I can appreciate the hard work that goes into what these contestants are asked to do. My mother always sewed when I was growing up, and I know how much work was involved in making each garment. In fact, my mother had wanted to be designer when she was young. She was enrolled in F.I. T. (The Fashion Institute of Technology in NYC) but had to drop out due to illness. Mom never got to live out her dream of designing clothes, although I am sure she would have been great had she been able to. I remember being a kid and just wanting store bought clothes. We were poor and couldn't afford the latest fashions. My mom made all my clothes when I was young, and unfortunately, at the time I didn't appreciate it. I thought it made me look weird and different. Now I would love to wear something made just for me! Isn't it funny how we realize so many things too late? My mom doesn't sew anymore, her arthritis makes it hard to do so and her glaucoma makes it impossible to thread needles and do the other minute tasks required, but she still has style. We have enjoyed watching this show together, and from her experience I get to understand the designers struggles in a whole new way. I also find I look at garments differently than I did before. It isn't just a matter of whether they are my personal taste, but also of how much skill, effort and ingenuity went into making them. I learned that from mom as well.
I realize that fashion isn't the be all and end all of the world, but it is fun to have a show to enjoy with all ages, that shows people sacrificing to make a dream come true. I guess I enjoy it in a similar way to 'Dancing With The Stars', I live vicariously through the contestants. My body and my skill set won't allow me to do those things, but in my dreams I am there competing as well. I also learn things along the way, about myself and about others. Hey, it's not PBS, but sometimes it is fun to be entertained, especially during a long, painful flare when you want desperately to focus on something outside of yourself.
I discovered Project Runway when it was already several seasons on the air. I was confined to bed during a flare and there was a marathon of one of the past seasons on. I started to watch and got hooked quickly. Although I don't sew, I can appreciate the hard work that goes into what these contestants are asked to do. My mother always sewed when I was growing up, and I know how much work was involved in making each garment. In fact, my mother had wanted to be designer when she was young. She was enrolled in F.I. T. (The Fashion Institute of Technology in NYC) but had to drop out due to illness. Mom never got to live out her dream of designing clothes, although I am sure she would have been great had she been able to. I remember being a kid and just wanting store bought clothes. We were poor and couldn't afford the latest fashions. My mom made all my clothes when I was young, and unfortunately, at the time I didn't appreciate it. I thought it made me look weird and different. Now I would love to wear something made just for me! Isn't it funny how we realize so many things too late? My mom doesn't sew anymore, her arthritis makes it hard to do so and her glaucoma makes it impossible to thread needles and do the other minute tasks required, but she still has style. We have enjoyed watching this show together, and from her experience I get to understand the designers struggles in a whole new way. I also find I look at garments differently than I did before. It isn't just a matter of whether they are my personal taste, but also of how much skill, effort and ingenuity went into making them. I learned that from mom as well.
I realize that fashion isn't the be all and end all of the world, but it is fun to have a show to enjoy with all ages, that shows people sacrificing to make a dream come true. I guess I enjoy it in a similar way to 'Dancing With The Stars', I live vicariously through the contestants. My body and my skill set won't allow me to do those things, but in my dreams I am there competing as well. I also learn things along the way, about myself and about others. Hey, it's not PBS, but sometimes it is fun to be entertained, especially during a long, painful flare when you want desperately to focus on something outside of yourself.
On Writing
I enjoy writing, and obviously I have an interest in doing it or I wouldn't be blogging, but I am always looking to learn more about the craft of writing. I attend a writer's workshop that meets monthly nearby to where I live. The teacher is a published author and a college professor, Barbara Novack. She is very supportive of all of the members of the group and extremely helpful and informative. Barbara is wonderful at helping you when you feel stuck, editing when you need it and pointing you to places you might not have thought about to submit your work for publication. The other writers are a very talented group of people with diverse interests. I find everyone to be so supportive of one another, which is really lovely. Even if the genre I write in isn't what interests someone else, they are always thoughtful and helpful in response to my work.
In addition to the workshop, I enjoy reading books about writing. Someone from the writer's workshop had recommended Stephen King's 'On Writing' and I have been reading that the past few days. I have to say that Stephen King is not the type of author I usually read, but he makes some very interesting points about writing itself, and of course he is an enormously successful author, so he has a lot of valuable experience to share.
Another book I really enjoyed was written by a local author, Carol Hoenig, who came to speak to our writer's group about how to market your writing. She has written a beautiful novel, 'Without Grace' as well as a non-fiction book for writer's trying to get their book into reader's hands, 'The Author's Guide to Planning Book Events'. It has some of the most creative ways I have seen to target your audience and plan events that will get your book noticed and purchased.
Lastly, I read on a whim a tiny book by Scholastic titled, 'Conversations With J.K. Rowling' thinking it would be interesting to learn more about the author of the Harry Potter series. Although the book is clearly aimed at a young audience, it too had some useful information for fledgling writers. I read and loved the Harry Potter series, so I enjoyed learning more about Ms. Rowling and her experience with writing and becoming published.
Of course the very best thing for anyone who writes to do, beyond the actual writing, is to read! I love to read and find so many authors inspirational. If you are lucky enough to have a writer's group nearby, I encourage you to take part. If you can't find a group in your area, you can probably find one on-line, although I am partial to meeting in person with flesh and blood individuals myself!
In addition to the workshop, I enjoy reading books about writing. Someone from the writer's workshop had recommended Stephen King's 'On Writing' and I have been reading that the past few days. I have to say that Stephen King is not the type of author I usually read, but he makes some very interesting points about writing itself, and of course he is an enormously successful author, so he has a lot of valuable experience to share.
Another book I really enjoyed was written by a local author, Carol Hoenig, who came to speak to our writer's group about how to market your writing. She has written a beautiful novel, 'Without Grace' as well as a non-fiction book for writer's trying to get their book into reader's hands, 'The Author's Guide to Planning Book Events'. It has some of the most creative ways I have seen to target your audience and plan events that will get your book noticed and purchased.
Lastly, I read on a whim a tiny book by Scholastic titled, 'Conversations With J.K. Rowling' thinking it would be interesting to learn more about the author of the Harry Potter series. Although the book is clearly aimed at a young audience, it too had some useful information for fledgling writers. I read and loved the Harry Potter series, so I enjoyed learning more about Ms. Rowling and her experience with writing and becoming published.
Of course the very best thing for anyone who writes to do, beyond the actual writing, is to read! I love to read and find so many authors inspirational. If you are lucky enough to have a writer's group nearby, I encourage you to take part. If you can't find a group in your area, you can probably find one on-line, although I am partial to meeting in person with flesh and blood individuals myself!
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