Saturday, August 22, 2009
Hurting
I've spent the entire day in bed, in terrible pain and unable to eat or drink anything much. I am grateful to have the new netbook which allows me to log into the internet at times like this, when I usually can't keep in touch. It helps to have the support and friendship of the blogging and chronically ill communities, especially when things aren't going so well. I am trying to keep myself from focusing on the pain by watching tv, reading and thinking about writing. Sometimes the pain is so bad I can't focus on much else, but the more I focus on other things, the sooner this too shall pass (I hope!).
Friday, August 21, 2009
Bits and Pieces
I have some housekeeping I wanted to take care of blogwise and rather than write a traditional post I thought I would throw some bits and pieces at you.
I wanted to mention that Change of Shift is up at Emergiblog. If you haven't checked out this blog carnival before, you might want to give it a look. There are always interesting posts about all things medical, and you get opinions from patients, doctors, nurses and all sort of people in the healthcare field.
Invisible Illness Awareness Week is coming September 14-20, 2009. This is a wonderful series of programs that are free, available right from your computer in the privacy and comfort of your own home and jam packed with terrific information. I began blogging as a result of last years conference on blogging, and will be providing a guest post this year! Please make sure you check out this wonderful site and plan to "attend" as many of the conferences as you can, or at the very least download them and listen to them at your leisure!
Jenni Prokopy of ChronicBabe has not only begun podcasting but has started a forum site on ChronicBabe where you can go and connect with others to talk about all sorts of things illness related and otherwise! Jenni really helps inspire me to remain a "babe" ill or not, and I hope you will check out and join the new forum as well as listen to her latest podcast interview with Laurie Edwards. Great info and support, free for the taking - you can't beat that!
I am currently trying to spend some time focusing on my writing. I have several projects in the works including a magazine article pitch, a fiction novel and some memoir work. I went to my writing group yesterday and was so inspired by all the other great writers in the room, as well as our facilitator, Barbara Novack, who is Writer-in-residence at Molloy College and a published author and poet. I am so grateful to this group for the support and advice they give me, and I wish everyone had a group as good as this one to go to. Barbara Novack, in conjunction with the English Department at Molloy College is sponsoring a series of Author Afternoons at the college. If you live in the greater NY area and are interested in attending you can find more information at the college website.
I wanted to mention that Change of Shift is up at Emergiblog. If you haven't checked out this blog carnival before, you might want to give it a look. There are always interesting posts about all things medical, and you get opinions from patients, doctors, nurses and all sort of people in the healthcare field.
Invisible Illness Awareness Week is coming September 14-20, 2009. This is a wonderful series of programs that are free, available right from your computer in the privacy and comfort of your own home and jam packed with terrific information. I began blogging as a result of last years conference on blogging, and will be providing a guest post this year! Please make sure you check out this wonderful site and plan to "attend" as many of the conferences as you can, or at the very least download them and listen to them at your leisure!
Jenni Prokopy of ChronicBabe has not only begun podcasting but has started a forum site on ChronicBabe where you can go and connect with others to talk about all sorts of things illness related and otherwise! Jenni really helps inspire me to remain a "babe" ill or not, and I hope you will check out and join the new forum as well as listen to her latest podcast interview with Laurie Edwards. Great info and support, free for the taking - you can't beat that!
I am currently trying to spend some time focusing on my writing. I have several projects in the works including a magazine article pitch, a fiction novel and some memoir work. I went to my writing group yesterday and was so inspired by all the other great writers in the room, as well as our facilitator, Barbara Novack, who is Writer-in-residence at Molloy College and a published author and poet. I am so grateful to this group for the support and advice they give me, and I wish everyone had a group as good as this one to go to. Barbara Novack, in conjunction with the English Department at Molloy College is sponsoring a series of Author Afternoons at the college. If you live in the greater NY area and are interested in attending you can find more information at the college website.
Wednesday, August 19, 2009
Simple Pleasures
Anyone who knows me or my blog knows I love quotes. There is something about capturing an important idea in a pithy saying that gets me every time! Today I wanted to share one of my favorite quotes and talk about how I try to apply it to everyday life.
"It isn't the great big pleasures that count the most; it's making a great deal out of the little ones."
-Jean Webster, Daddy-Long-Legs
-Jean Webster, Daddy-Long-Legs
This quote is a powerful reminder for me that ultimately I control things. Take a moment to really think about that, especially if you live with chronic illness - because sometimes NOTHING feels like it is in our control. The simple truth is that we all have a choice to celebrate the simple pleasures each day, and no matter what the state of our lives, our health, our relationships - we all have pleasures each day. The quote reminds me that they don't have to be big, huge, monumental things, in fact, very often the most important ones aren't.
It is all too easy to get caught up in the negative and think of all the things we can't control, the things we can't do, the people we can't change. But, how about trying to turn that thinking upside down and looking at all the things that DO work, you CAN do something about - the pleasures that you already HAVE each and every day? It's easier to have a pity party and blame the world and complain that things never go right. Yes, it is easier, but it is also far more dangerous. When you overlook the simple pleasures you stop being able enjoy them. The quote talks about making a big deal out of little pleasures. I am not married and I don't have children, so my pleasures might be different than some of yours, but we ALL have them if we choose to look. Some of my pleasures include things I have control over and many of them include things I have nothing to do with. An example that springs to mind for me immediately is the beauty of nature. I can be on a walk in my neighborhood and be stopped in my tracks by a beautiful flower, an interesting tree or leaf or a particularly playful squirrel or bird. Just the other day we had heavy rains that left deep puddles on the sides of the roads. I was pulling my car out of the driveway and I noticed three little sparrows splashing around in the puddle. They were so cute as they bathed in that puddle that I simply stopped for a moment to enjoy watching them. It wasn't earth shattering, it didn't cure me of my illness, but it made me appreciate the beauty that is all around me if I take the time to notice it.
Another example from my own life is something I call "gratitude for what works". When I am feeling particularly frustrated by my illnesses and like nothing works right in my entire body (pity-party anyone?) I sit myself down and focus on all the things about me that DO work. My eyes are really good, I don't even need reading glasses (yet!!). Although it hurts, I can walk all by myself, something many people can't do. Most days I can eat and drink most things, and after having met many of you who can't do that due to illness I am so grateful for it I try to always remember to be thankful. I have days where my pain makes it impossible to eat and I can barely drink, so the days when my digestion is working are truly a blessing and a pleasure I enjoy and celebrate. There are many other things, such as my brain, that work quite well, and I choose to focus on these to remind myself that there is much more that works than that doesn't.
Your simple pleasures might be the smell of your daughters hair right after her night time bath, the feel of the sun on your skin as you work in your garden, the sound of your favorite song on your IPOD as you commute to work, the look on your loved one's face just as you lean in for a morning kiss. Whatever your pleasures are, be thankful for them, celebrate them and make a big deal out of the "little" things that make life worth living. All the money in the world can't buy any of these things, and yet they are my most precious possessions.
It is all too easy to get caught up in the negative and think of all the things we can't control, the things we can't do, the people we can't change. But, how about trying to turn that thinking upside down and looking at all the things that DO work, you CAN do something about - the pleasures that you already HAVE each and every day? It's easier to have a pity party and blame the world and complain that things never go right. Yes, it is easier, but it is also far more dangerous. When you overlook the simple pleasures you stop being able enjoy them. The quote talks about making a big deal out of little pleasures. I am not married and I don't have children, so my pleasures might be different than some of yours, but we ALL have them if we choose to look. Some of my pleasures include things I have control over and many of them include things I have nothing to do with. An example that springs to mind for me immediately is the beauty of nature. I can be on a walk in my neighborhood and be stopped in my tracks by a beautiful flower, an interesting tree or leaf or a particularly playful squirrel or bird. Just the other day we had heavy rains that left deep puddles on the sides of the roads. I was pulling my car out of the driveway and I noticed three little sparrows splashing around in the puddle. They were so cute as they bathed in that puddle that I simply stopped for a moment to enjoy watching them. It wasn't earth shattering, it didn't cure me of my illness, but it made me appreciate the beauty that is all around me if I take the time to notice it.
Another example from my own life is something I call "gratitude for what works". When I am feeling particularly frustrated by my illnesses and like nothing works right in my entire body (pity-party anyone?) I sit myself down and focus on all the things about me that DO work. My eyes are really good, I don't even need reading glasses (yet!!). Although it hurts, I can walk all by myself, something many people can't do. Most days I can eat and drink most things, and after having met many of you who can't do that due to illness I am so grateful for it I try to always remember to be thankful. I have days where my pain makes it impossible to eat and I can barely drink, so the days when my digestion is working are truly a blessing and a pleasure I enjoy and celebrate. There are many other things, such as my brain, that work quite well, and I choose to focus on these to remind myself that there is much more that works than that doesn't.
Your simple pleasures might be the smell of your daughters hair right after her night time bath, the feel of the sun on your skin as you work in your garden, the sound of your favorite song on your IPOD as you commute to work, the look on your loved one's face just as you lean in for a morning kiss. Whatever your pleasures are, be thankful for them, celebrate them and make a big deal out of the "little" things that make life worth living. All the money in the world can't buy any of these things, and yet they are my most precious possessions.
Thursday, July 30, 2009
Thankful Thursday
Mom and I had a busy day. She had a procedure this morning that required her to be put under anesthesia. Of course we had to be up early to get to the surgery center, and although we were on time, the doctor wasn't. The important thing is that mom came through it all okay and although we don't have the biopsies back yet, the doctor is confident they will be fine.
We live in Floral Park, the town in which the family who was killed on the Taconic Parkway lives. The last few days have been a time of great sadness in our community. The only good thing that happens at a time like this is that you realize all the blessings you have. I am blessed to still have my mother with me. I pray for the families who no longer have their children, their mom and their dad there to hug at night. Please keep them all in your prayers and hug your own loved ones tonight and be thankful for all you do have. Illness can't take those important relationships away from us!
We live in Floral Park, the town in which the family who was killed on the Taconic Parkway lives. The last few days have been a time of great sadness in our community. The only good thing that happens at a time like this is that you realize all the blessings you have. I am blessed to still have my mother with me. I pray for the families who no longer have their children, their mom and their dad there to hug at night. Please keep them all in your prayers and hug your own loved ones tonight and be thankful for all you do have. Illness can't take those important relationships away from us!
Wednesday, July 29, 2009
July Pain-Blog Carnival
The July edition of the Pain-Blog Carnival hosted by How To Cope With Pain is up at Pain-Blog Carnival and yours truly has a post on advocacy that was included. Please stop by and check out the carnival and the posts selected, you will always find something interesting and helpful there.
And The Beat Goes On
Have you ever had so much to say you didn't know where to start? That's how I feel right now writing this post. So much has happened, and yet it would be ridiculous, not to mention novel length, to tell it all. So how to sum up without dismissing the horror of the past few months. . .
Obviously things took a big turn for the worse with the insurance company debacle over covering my pain medicine. That, for the moment, is straightened out. What I have learned along the way is that everything is always hanging by a thread, waiting to fall apart with little or no notice. Because my body was put through so much with out of control pain, I am now on even higher doses of pain medication than I formerly needed. This not only angers me, it costs me more and will in the end cause more problems for me medically. The blame for it sits squarely at the feet of the insurance company, who of course could care less.
Not surprisingly I am having all sorts of other medical issues. Many of these are directly related to the stress my body and mind have been under while fighting to get my pain back in control. I am currently going for testing to see how my pancreas is doing, if there has been further damage and if there is anything else that can be done to help. My immune system is completely shot, so a host of other problems has cropped up as a result of that, continuing infections, malfunctioning parts of my endocrine system, mysterious weight gain and water retention. I have more problems than time in the day to address them.
I am seeing lots of doctors, including quite a few new specialists, who are trying to address the problems - many of them don't have answers. Fortunately, being a veteran of "invisible illness" I am all too familiar with this scenario, so I mostly take it in stride.
In the meantime I have been taking a long, hard look at the things that ARE in my control, and what I am doing to support myself. The first thing that seems to go is self care, which of course is most important. I listened to Jenni Prokopy's first podcast over at ChronicBabe, and although I knew most of the information, it was a nice reminder. Good advice handled with humor and compassion. I recommend checking it out, even if you have been ill for a long time. Sometimes we all need a kick in the pants, and the information she gives, while basic for those of us who have been dealing with chronic illness for a long time, is still helpful.
I am so grateful for the many wonderful e-mails and comments I have received from many of you while I have been struggling. I never cease to be amazed at the amount of love and concern that people have to share, and am humbled that they choose to share it with me. Even though my posts have been erratic and fairly maudlin lately, I have been lifted up by the care and support of each of you who took the time to say you where thinking of me, praying for me, understood what I was going through or just plain cared! Thank you from the bottom of my heart. It is support like this that keeps me going when I feel like I just don't have another fight left in me.
Hopefully my posting will start to be more regular again, and of course I hope to touch on something other than just my illness in each post. Thanks for hanging in there through the dark times and please keep coming back to share the lighter times as well.
Obviously things took a big turn for the worse with the insurance company debacle over covering my pain medicine. That, for the moment, is straightened out. What I have learned along the way is that everything is always hanging by a thread, waiting to fall apart with little or no notice. Because my body was put through so much with out of control pain, I am now on even higher doses of pain medication than I formerly needed. This not only angers me, it costs me more and will in the end cause more problems for me medically. The blame for it sits squarely at the feet of the insurance company, who of course could care less.
Not surprisingly I am having all sorts of other medical issues. Many of these are directly related to the stress my body and mind have been under while fighting to get my pain back in control. I am currently going for testing to see how my pancreas is doing, if there has been further damage and if there is anything else that can be done to help. My immune system is completely shot, so a host of other problems has cropped up as a result of that, continuing infections, malfunctioning parts of my endocrine system, mysterious weight gain and water retention. I have more problems than time in the day to address them.
I am seeing lots of doctors, including quite a few new specialists, who are trying to address the problems - many of them don't have answers. Fortunately, being a veteran of "invisible illness" I am all too familiar with this scenario, so I mostly take it in stride.
In the meantime I have been taking a long, hard look at the things that ARE in my control, and what I am doing to support myself. The first thing that seems to go is self care, which of course is most important. I listened to Jenni Prokopy's first podcast over at ChronicBabe, and although I knew most of the information, it was a nice reminder. Good advice handled with humor and compassion. I recommend checking it out, even if you have been ill for a long time. Sometimes we all need a kick in the pants, and the information she gives, while basic for those of us who have been dealing with chronic illness for a long time, is still helpful.
I am so grateful for the many wonderful e-mails and comments I have received from many of you while I have been struggling. I never cease to be amazed at the amount of love and concern that people have to share, and am humbled that they choose to share it with me. Even though my posts have been erratic and fairly maudlin lately, I have been lifted up by the care and support of each of you who took the time to say you where thinking of me, praying for me, understood what I was going through or just plain cared! Thank you from the bottom of my heart. It is support like this that keeps me going when I feel like I just don't have another fight left in me.
Hopefully my posting will start to be more regular again, and of course I hope to touch on something other than just my illness in each post. Thanks for hanging in there through the dark times and please keep coming back to share the lighter times as well.
Monday, June 29, 2009
The Ugly Truth
Again so much time has passed without my posting. The truth is that I feel so down I just haven't done it. There, I admitted what we (the chronically ill person) are NEVER supposed to admit, I am down. All of the past few months events have left me not only physically worse for the wear, but also emotionally and spiritually spent. It is really scary for me, I am not someone who gets down and stays there, I'm more of a "okay the pity party is now officially over, let's get up and do something constructive" type. The truth is I have absolutely no idea what to do.
My medication is not being covered again, so I am trying to find $1200 a month to pay for something I have to have to function, while the insurance company and my doctor duke it out. I have absolutely no control over the outcome, which is terrifying. In the meantime, I am also in the wonderful Medicare Part D "donut hole" so NONE of prescriptions are covered at all. This will continue until I pay $5500 out of pocket (oh did I mention I DON'T HAVE IT!). I HAVE to take most of my medications, for instance without my hydrocortisone my adrenals don't function. Not taking my medication isn't an option for me. Again, I have little or no control over this.
Each day seems to bring another health issue (no big shock considering what I am going through) which adds to the already enormous stress level. I am bone tired, dealing with all the physical issues, which range from systemic thrush, to a shoulder in need of surgery, to immune system issues to fevers is enough without the constant money problems, the fights with the insurance company and the never ending trips to the doctors. I want a day off. I want to not worry for 24 hours. I want someone else to slay the dragons for the day. It won't happen, but I can still wish for it, can't I?
So my posts have been few and far between. At least when I have the medication I can actually sit at the computer, without it I cannot for the pain is unbelievable in this position otherwise.
Most of my doctors are pretty good, but we have a health care system were each doctor is so specialized that they only focus on their particular area of expertise. I wish I had a good internist who pulled it all together and saw how one thing is affecting the other, but I don't, and despite many attempts to find one, I simply haven't been able to. I can't even get angry at the doctors, the system itself is so broken that they do all they can. The truth is that chronic illness isn't handled well in our country. We are a deal with it after the fact nation. We don't do prevention well. We don't take the time to study the effects of one issue on another.
Those of you with chronic illness will understand what I mean, and, I hope, those of you without may learn something new from my perspective. In the meantime, I will keep putting one foot in front of the other and praying for better days ahead. It's all I can do in the end, the rest is in God's hands.
My medication is not being covered again, so I am trying to find $1200 a month to pay for something I have to have to function, while the insurance company and my doctor duke it out. I have absolutely no control over the outcome, which is terrifying. In the meantime, I am also in the wonderful Medicare Part D "donut hole" so NONE of prescriptions are covered at all. This will continue until I pay $5500 out of pocket (oh did I mention I DON'T HAVE IT!). I HAVE to take most of my medications, for instance without my hydrocortisone my adrenals don't function. Not taking my medication isn't an option for me. Again, I have little or no control over this.
Each day seems to bring another health issue (no big shock considering what I am going through) which adds to the already enormous stress level. I am bone tired, dealing with all the physical issues, which range from systemic thrush, to a shoulder in need of surgery, to immune system issues to fevers is enough without the constant money problems, the fights with the insurance company and the never ending trips to the doctors. I want a day off. I want to not worry for 24 hours. I want someone else to slay the dragons for the day. It won't happen, but I can still wish for it, can't I?
So my posts have been few and far between. At least when I have the medication I can actually sit at the computer, without it I cannot for the pain is unbelievable in this position otherwise.
Most of my doctors are pretty good, but we have a health care system were each doctor is so specialized that they only focus on their particular area of expertise. I wish I had a good internist who pulled it all together and saw how one thing is affecting the other, but I don't, and despite many attempts to find one, I simply haven't been able to. I can't even get angry at the doctors, the system itself is so broken that they do all they can. The truth is that chronic illness isn't handled well in our country. We are a deal with it after the fact nation. We don't do prevention well. We don't take the time to study the effects of one issue on another.
Those of you with chronic illness will understand what I mean, and, I hope, those of you without may learn something new from my perspective. In the meantime, I will keep putting one foot in front of the other and praying for better days ahead. It's all I can do in the end, the rest is in God's hands.
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