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.
Showing posts with label Acceptance. Show all posts
Showing posts with label Acceptance. Show all posts
Wednesday, July 29, 2009
Wednesday, May 27, 2009
Advocacy
Since that was the topic I left off on before all this started, I wanted to pick up the thread briefly again to say I have been self advocating these past few months, and although it is exhausting and frustrating, it is so necessary! I don't have a spouse or significant other to take care of it for me, so I have to take care of myself. There are days I can't do it, I won't lie, but I try my hardest to fight for me, because let's face it, no one else will!
The fact that I have put thought into things BEFORE a flare or catastrophe has helped to make things easier. I have also accepted any and all help offered, no matter how small or insignificant it may have seemed. Anything I don't have to do is a help right now. If someone offers to pick up milk one day, I let them. If they offer to make a phone call or drive me, I say thank you! I can't be proud and pretend I can do everything when I am falling apart myself.
I still don't have a perfect support system. Other than my mom, I have no family help at all. I have few friends who understand or even offer. But there are some people who try and I appreciate it. I am brainstorming right now as to other resources for help, perhaps through my church, because we need the help. The point to advocating isn't to perfect, it is to keep trying and to not give up on finding help when you need it. It is also about being that help when you can.
I can and do offer myself to others when I am able because I know how hard it is. Believe me it comes back to you sevenfold. I don't do so others will help me, I do it because I know how grateful I feel when my neighbor offers to run to the store for me, when someone else takes the trash or recycling to curb on Sunday nights when I can't get out of bed, etc. . . Be a friend to others and you will always have friends. Some won't ever get what you are going through, but that's alright. It isn't a score keeping game, it's life!
The fact that I have put thought into things BEFORE a flare or catastrophe has helped to make things easier. I have also accepted any and all help offered, no matter how small or insignificant it may have seemed. Anything I don't have to do is a help right now. If someone offers to pick up milk one day, I let them. If they offer to make a phone call or drive me, I say thank you! I can't be proud and pretend I can do everything when I am falling apart myself.
I still don't have a perfect support system. Other than my mom, I have no family help at all. I have few friends who understand or even offer. But there are some people who try and I appreciate it. I am brainstorming right now as to other resources for help, perhaps through my church, because we need the help. The point to advocating isn't to perfect, it is to keep trying and to not give up on finding help when you need it. It is also about being that help when you can.
I can and do offer myself to others when I am able because I know how hard it is. Believe me it comes back to you sevenfold. I don't do so others will help me, I do it because I know how grateful I feel when my neighbor offers to run to the store for me, when someone else takes the trash or recycling to curb on Sunday nights when I can't get out of bed, etc. . . Be a friend to others and you will always have friends. Some won't ever get what you are going through, but that's alright. It isn't a score keeping game, it's life!
Wednesday, March 25, 2009
One Step Forward, Two Steps Back
I want to apologize for the long delay since my last post. Regular readers are probably aware not only of my daily health challenges, but also what I have been going through trying to get a surgery scheduled and done. I have been battling an infection that just won't clear, which is common for those of us who deal with multiple health issues, especially autoimmune ones. Right now my immune system just isn't working, and as a result the surgery has been postponed indefinitely. Until the infection clears we cannot take the chance of spreading it systemically during the operation. I understand this, but it doesn't make it easier to deal with.
Another thing I have been going through is what my dentist calls "remodeling" of my jaw. I had to laugh when he said that, I mean what person with chronic illness doesn't feel like their whole body has been remodeled (and not to their liking!). Seriously, I had a tooth extracted back in February and have been waiting for the site to heal completely since (see the above paragraph about how we don't heal quickly!). Last week I noticed a very sharp piece of something, which felt suspiciously like bone to my untrained finger, jutting forth from my gum at the site where the tooth had been extracted from. Sure enough, that is exactly what it is. Evidently when we lose a tooth the jaw "remodels" itself to adapt to the loss and shape itself accordingly (aren't our bodies fascinating things?!). Anyway, this piece of bone will eventually make its way out of the gum and out of my mouth. In the meantime all I can do is wait and use warm salt water swishes to help it along.
So my absence from the blogosphere has been due to numerous health complications that have drained me physically, emotionally and creatively. I appreciate your patience with me and will try to get back on track as my health allows.
Another thing I have been going through is what my dentist calls "remodeling" of my jaw. I had to laugh when he said that, I mean what person with chronic illness doesn't feel like their whole body has been remodeled (and not to their liking!). Seriously, I had a tooth extracted back in February and have been waiting for the site to heal completely since (see the above paragraph about how we don't heal quickly!). Last week I noticed a very sharp piece of something, which felt suspiciously like bone to my untrained finger, jutting forth from my gum at the site where the tooth had been extracted from. Sure enough, that is exactly what it is. Evidently when we lose a tooth the jaw "remodels" itself to adapt to the loss and shape itself accordingly (aren't our bodies fascinating things?!). Anyway, this piece of bone will eventually make its way out of the gum and out of my mouth. In the meantime all I can do is wait and use warm salt water swishes to help it along.
So my absence from the blogosphere has been due to numerous health complications that have drained me physically, emotionally and creatively. I appreciate your patience with me and will try to get back on track as my health allows.
Tuesday, March 10, 2009
Advocating - Sometimes It Works, and Sometimes It Doesn't
I think for me one of the most frustrating parts of having chronic illness is the constant need to advocate for myself. It is tiring, both emotionally and physically, but I know it is important so I do it to the best of my ability. I encourage others to do it as well, so it is an area where I try to "walk my talk".
I was scheduled for surgery on March 18th. Because I have a complicated medical history, I addressed issues with my doctor as soon as we agreed that surgery would be necessary. I take pain medication daily, so that is a big issue that has to taken into account when you are talking about having any sort of procedure. For one thing, my body is used to having that type of medication, so my need for proper dosages of anesthesia and post operative pain care are different than the average patient. Another complication comes in from the area of my adrenal insufficiency. Because my body doesn't make cortisol the way it should, I have to take hydrocortisone daily as a replacement. Any time I am sick or under a lot of stress I have to take additional doses. This is especially true for something like an operation or procedure. It is another item that needs to be dealt with before any surgery, hospitalization or procedure is done.
Knowing all of this, I have been diligent in getting my GYN (who will be performing my surgery) to contact the other specialists who handle these different aspects of my care. It is annoying to always have to be the one who brings these items up, but I have learned from past experience that the only person who suffers if I don't is me, so my advocating for myself is purely self-interest.
Despite the fact that my surgery was scheduled over 3 weeks ago, and that I have tried to make sure that all of these factors were taken into consideration, I learned yesterday that my surgery was being cancelled for the 18th and will have to be re-scheduled. The long and short of it being I need to be the first patient of the day to deal with the pain management control area of my case. One doctor blames another for overlooking this crucial point, but the fact is it doesn't really matter who is at fault because once again the person who is affected the most is ME. I am annoyed because I have spent the past few weeks getting ready both mentally and physically to have this done next week. I have spent time going to appointments that revolved around pre-op stuff, making sure that people would be available to help me out after the surgery since I won't be hospitalized, getting things in order at home and a million other tasks that required my energy and focus, both of which are always in short supply when you are chronically ill. Now I will have to wait for the surgery to be re-scheduled and repeat the whole process all over. Not only it is frustrating, it is upsetting.
The best part is that the doctors and their offices actually have the nerve to act put off by this, as if being chronically ill and needing all these special arrangements are something someone enjoys and likes having to deal with! Again, even with the best advocacy I could provide, the person who ends up paying for the mistakes of others is me, and as if that isn't bad enough I also get treated to a dose of attitude on top of it. I could understand their feelings if I waited until the last minute to provide them with information that caused them to have to re-schedule, but since the errors aren't mine I don't appreciate having to deal with hostility at their own mistakes being directed at me.
The only thing I can say is that in the past, before I learned how things really happened in our health care system, I would have trusted that the doctors would take care of all of this, and instead of facing a postponed surgery, I would be sitting in the surgical area without proper pain management and facing the possibility of adrenal failure or shock from lack of treatment for my condition. So I guess instead of looking at this as the total failure of my advocacy, I should look at it as a small victory - I no longer allow myself to be treated that way. I will have the surgery when the proper procedures have been put into place to make it as safe and effective for me as possible.
I was scheduled for surgery on March 18th. Because I have a complicated medical history, I addressed issues with my doctor as soon as we agreed that surgery would be necessary. I take pain medication daily, so that is a big issue that has to taken into account when you are talking about having any sort of procedure. For one thing, my body is used to having that type of medication, so my need for proper dosages of anesthesia and post operative pain care are different than the average patient. Another complication comes in from the area of my adrenal insufficiency. Because my body doesn't make cortisol the way it should, I have to take hydrocortisone daily as a replacement. Any time I am sick or under a lot of stress I have to take additional doses. This is especially true for something like an operation or procedure. It is another item that needs to be dealt with before any surgery, hospitalization or procedure is done.
Knowing all of this, I have been diligent in getting my GYN (who will be performing my surgery) to contact the other specialists who handle these different aspects of my care. It is annoying to always have to be the one who brings these items up, but I have learned from past experience that the only person who suffers if I don't is me, so my advocating for myself is purely self-interest.
Despite the fact that my surgery was scheduled over 3 weeks ago, and that I have tried to make sure that all of these factors were taken into consideration, I learned yesterday that my surgery was being cancelled for the 18th and will have to be re-scheduled. The long and short of it being I need to be the first patient of the day to deal with the pain management control area of my case. One doctor blames another for overlooking this crucial point, but the fact is it doesn't really matter who is at fault because once again the person who is affected the most is ME. I am annoyed because I have spent the past few weeks getting ready both mentally and physically to have this done next week. I have spent time going to appointments that revolved around pre-op stuff, making sure that people would be available to help me out after the surgery since I won't be hospitalized, getting things in order at home and a million other tasks that required my energy and focus, both of which are always in short supply when you are chronically ill. Now I will have to wait for the surgery to be re-scheduled and repeat the whole process all over. Not only it is frustrating, it is upsetting.
The best part is that the doctors and their offices actually have the nerve to act put off by this, as if being chronically ill and needing all these special arrangements are something someone enjoys and likes having to deal with! Again, even with the best advocacy I could provide, the person who ends up paying for the mistakes of others is me, and as if that isn't bad enough I also get treated to a dose of attitude on top of it. I could understand their feelings if I waited until the last minute to provide them with information that caused them to have to re-schedule, but since the errors aren't mine I don't appreciate having to deal with hostility at their own mistakes being directed at me.
The only thing I can say is that in the past, before I learned how things really happened in our health care system, I would have trusted that the doctors would take care of all of this, and instead of facing a postponed surgery, I would be sitting in the surgical area without proper pain management and facing the possibility of adrenal failure or shock from lack of treatment for my condition. So I guess instead of looking at this as the total failure of my advocacy, I should look at it as a small victory - I no longer allow myself to be treated that way. I will have the surgery when the proper procedures have been put into place to make it as safe and effective for me as possible.
Monday, March 2, 2009
Snowstorms and Illness
Today we had a good old fashioned blizzard - yep a full on 14 inches of heavy, wet snow! When I was a kid I couldn't wait for such storms, it meant a day off from school. As an adult it isn't such a joyful event.I realize that what I am about to say can apply to healthy people to a degree as well when you are talking about such large amounts of snow, but allow me to rant anyway:
- On a good day I can barely lift groceries to bring them in from the car, so you can imagine that shoveling heavy snow isn't possible for me.
- Of course the blizzard had to hit on the day I have an appointment with my pain management specialist, and I am having trouble with my medication so I needed to see him today.
- This being New York, nothing but school closes for snow, so the doctor's office wasn't exactly thrilled that I cancelled my appointment, despite the fact I couldn't get out my door, no less my driveway.
- My landlord is supposed to have snow removal service as part of the price of our rent, however the service is spotty at best. Sometimes they arrive the day AFTER a storm ends sometimes they don't arrive at all.
- My mother and I are stuck in the house until we can find someone to shovel us out, or the snow removal people make their appearance.
On the flip side, I am grateful that we have a warm roof over our heads. Because we had advance warning the storm was coming we have food to eat and will be alright if we are stuck indoors for a few days. I know that many people aren't so blessed, they are cold or hungry or worse. So I am going to try to look at the part of my glass that is half full and not the empty part. Harder to do when I am in pain, but good practice for me, especially in this season of Lent. So for the moment, thank you God for supplying me with another lesson in humility and thankfulness, please help me to use it to learn how deeply you love me and care for me, even when I think I am forgotten - You never forget me!
Monday, February 16, 2009
Life Lessons
"Life is a great big canvas, and you should throw all the paint you can on it."
-- Danny Kaye
There are secrets to living a happy life with chronic illness. They may differ depending on the person and the illness, but the essential parts remain the same. I want to explore some of these secrets that I have learned, the hard way, through my years of living with, and thriving despite having chronic illness:
SECRET #1
Never forget who you are and never let illness define it!
-- Danny Kaye
There are secrets to living a happy life with chronic illness. They may differ depending on the person and the illness, but the essential parts remain the same. I want to explore some of these secrets that I have learned, the hard way, through my years of living with, and thriving despite having chronic illness:
SECRET #1
Never forget who you are and never let illness define it!
- Seize every opportunity you can to have fun and to connect to the parts of yourself that make you who you are. It is easy to get bogged down in the day to day minutiae of the chronic illness grind - the doctors, the medications, the pain and fatigue.
- Take a play break, make a snow angel, color a picture, sing your favorite song out loud, call a friend and laugh, whatever connects you to the happy you. I don't promise you it will make everything all better, but when done regularly it will help to remind you there is more to you than illness.
- Sometimes just knowing that helps you to go on, and once you go on, you tap into the real parts of you that have always been there - these are the parts the illness seems to have stripped away.
- You may have to get creative here, illness can and does have a very real effect on our bodies, but you can find things you CAN do - celebrate your abilities, don't dwell on your disabilities!
Sunday, January 18, 2009
Fighting With Myself
Well we've had another round of snow here in New York. Not exactly a news flash for January weather, but an annoyance all the same. It wasn't a tremendous storm, we got a couple of inches of the white, powdery stuff. What is driving me crazy is my inability to do anything about clearing it away. I had written last month about my attempt at shoveling and how sick I had made myself. I know I really need to clear the stoops and walkways off to make it possible to get out tomorrow, but I know I am physically unable to do it. My landlord has a crew that is supposed to come by and do it, but they haven't shown. Given that it is a weekend, and a holiday one at that, I expect they aren't coming. Tonight the temperatures will dip down even lower and we will have icing, making it more treacherous. I hate my inability to do anything about it. So I sit and stew over what I can't do. Silly isn't it? I hate feeling helpless!
Friday, January 16, 2009
Some of my Writing
I am a writer, I guess all of us bloggers are really. . . and today I wanted to share a piece I had written for my writer's group. The idea was to discuss your most important day, however you interpreted that phrase. Below is what I wrote.
MY MOST IMPORTANT DAY
The morning dawned clear and full of promise. As the alarm rang, I hit the off button ans sprang from my bed ready to face the day and whatever it held. I zipped through all my morning routine, from shower to breakfast and was on the way out the door in a little over an hour. I continued at full pace all day at work, got lots accomplished and stopped to meet friends after work for a drink. When I arrived home after 10 pm, I did a quick load of laundry, finished the breakfast dishes I had left behind and made my "to-do" list for the next day. Before heading to bed around midnight I set out my clothes for the following morning and watched a little of the late night talk shows before drifting off to sleep to repeat the same scenario all over again the following day. I didn't know it at the time, but this day, and many days like it, were my most important days. You see, I'm one of millions of Americans who battles multiple chronic illnesses, most of which are called "invisible illnesses", not because they aren't real, but because their affect isn't always obvious to the untrained eye.
Depending on when and where you meet me, you might not even know I am sick. But sick I am, and there isn't a part of my life that hasn't been changed over the past 12 years. BBI (Before Becoming Ill) I took all the parts of a normal day for granted. All the tasks that we each do, personal hygiene, errands, socializing, work, play, exercise and even sleep were givens, a part of everyone's life. I never had to make a decision between having the energy to shower or the energy to vacuum the rug; there was energy enough for all of it.
My knowledge of our medical system, of drugs, hospitals and doctors was limited to the occasional bout of flu and my annual GYN exam. I took my health for granted, it would always be there, right? I mean after all, I was 30 years old, why would I think otherwise?
Now after years of hard won knowledge, not only of the medical system, but more importantly of my own body, I realize how naive I was then. But in my naivete was also a wonderful care-freeness, the same trait that helped to form that most important day, the day that existed before illness robbed me of pieces of myself bit by bit. The day when I didn't have to make every single choice based on how I am feeling, how I will feel if I do a particular action, eat a particular food, or take a particular medication. The day, not extraordinary, but ordinary to all who are healthy, and envied by all who are not.
Most people, if they are blessed to live long enough, will face the loss of being able to do certain things. After all, our bodies age and we expect that as they do we may have to give up activities or at least tone them down. The marathon runner may become a jogger, the jogger a walker and so on. We even realize that we will have aches and pains and tire more easily, but we never expect it to happen while we are young!
The heinousness of chronic illness is that it is chronic, meaning it NEVER goes away. Some days are better than others and some treatments provide temporary relief of some symptoms, but there is no cure, no getting better for good. And most chronic illnesses progress, even if very slowly, stealing from you like a thief in the night. Each symptom brings its own array of collateral damage. Pain for instance makes sleep difficult, which increases fatigue and decreases mental clarity. It's like a game of dominoes, one symptom tumbling into the next and knocking into the next and so on.
If you are lucky enough to be healthy, you probably get up and begin your day without any thought to how your physical body is doing (like my most important day), not because you are ignorant, but because you can. Your body isn't calling the shots from the moment you open your eyes (assuming you were lucky enough to sleep the night before!). That is/was my ideal day! The days that occurred, without notice, when I went about my business without having to weigh everything I did and determine what would be possible and what wouldn't. To not have to cancel plans made with a friend due to an unexpected flare. To be able to help someone else at a moments notice because I had the energy and ability to do so. To laugh and run and yes, play, with abandon - to love life and those in it to the fullest without compromising or paying for it later.
Since I can't have that day back, I've had to learn to accept life as it now, as it changes each day and to be grateful for all that I can do. Instead of putting my focus on what I have lost, I look at what I have gained. Many people can't imagine what good could come from my illness. At first it was hard for me to see it myself. But, over time, I realized that although I have changed in ways I wished I hadn't, I also changed for the better in other ways. I appreciate the little things now in a way I never did BBI. I am more patient, with myself and others, recognizing as Philo of Alexandria said, "Be kind, for everyone you meet is fighting a great battle". I am not as quick to judge others, especially from appearances, because I know all too well how misleading that can be.
I've learnt a lot about who I am, how strong I am and about who my real friends are. Most people want to be around during the good times in our lives, but who at your side when you are scared, or sick or in pain? Who understands when you have to cancel plans at the last minute yet again? Who is willing to be with you, even when they can't make it better, but knows you need someone to talk to, or cry with, or laugh with? These are the people I treasure beyond telling, because we live in a society that judges us by what job we hold or what financial success we attain, and if judged by those standards, I would be be considered a failure in most eyes. I am on disability and my financial situation is tenuous at best. But there are people who see the value in me, the human being, the funny, kind, smart, caring person trapped inside all the illness. Most importantly, I've learned to see myself that way, to be proud of who I am and to know I have value as person. I can still love, laugh and be a support or inspiration to others, so while I may not always be able to do all I would like in a day, I can take comfort in the knowledge that I've done my best, and when all is said and done, can any of us, healthy or not, ask for more than that?
- - Maureen Hayes 2008 copyrighted
Depending on when and where you meet me, you might not even know I am sick. But sick I am, and there isn't a part of my life that hasn't been changed over the past 12 years. BBI (Before Becoming Ill) I took all the parts of a normal day for granted. All the tasks that we each do, personal hygiene, errands, socializing, work, play, exercise and even sleep were givens, a part of everyone's life. I never had to make a decision between having the energy to shower or the energy to vacuum the rug; there was energy enough for all of it.
My knowledge of our medical system, of drugs, hospitals and doctors was limited to the occasional bout of flu and my annual GYN exam. I took my health for granted, it would always be there, right? I mean after all, I was 30 years old, why would I think otherwise?
Now after years of hard won knowledge, not only of the medical system, but more importantly of my own body, I realize how naive I was then. But in my naivete was also a wonderful care-freeness, the same trait that helped to form that most important day, the day that existed before illness robbed me of pieces of myself bit by bit. The day when I didn't have to make every single choice based on how I am feeling, how I will feel if I do a particular action, eat a particular food, or take a particular medication. The day, not extraordinary, but ordinary to all who are healthy, and envied by all who are not.
Most people, if they are blessed to live long enough, will face the loss of being able to do certain things. After all, our bodies age and we expect that as they do we may have to give up activities or at least tone them down. The marathon runner may become a jogger, the jogger a walker and so on. We even realize that we will have aches and pains and tire more easily, but we never expect it to happen while we are young!
The heinousness of chronic illness is that it is chronic, meaning it NEVER goes away. Some days are better than others and some treatments provide temporary relief of some symptoms, but there is no cure, no getting better for good. And most chronic illnesses progress, even if very slowly, stealing from you like a thief in the night. Each symptom brings its own array of collateral damage. Pain for instance makes sleep difficult, which increases fatigue and decreases mental clarity. It's like a game of dominoes, one symptom tumbling into the next and knocking into the next and so on.
If you are lucky enough to be healthy, you probably get up and begin your day without any thought to how your physical body is doing (like my most important day), not because you are ignorant, but because you can. Your body isn't calling the shots from the moment you open your eyes (assuming you were lucky enough to sleep the night before!). That is/was my ideal day! The days that occurred, without notice, when I went about my business without having to weigh everything I did and determine what would be possible and what wouldn't. To not have to cancel plans made with a friend due to an unexpected flare. To be able to help someone else at a moments notice because I had the energy and ability to do so. To laugh and run and yes, play, with abandon - to love life and those in it to the fullest without compromising or paying for it later.
Since I can't have that day back, I've had to learn to accept life as it now, as it changes each day and to be grateful for all that I can do. Instead of putting my focus on what I have lost, I look at what I have gained. Many people can't imagine what good could come from my illness. At first it was hard for me to see it myself. But, over time, I realized that although I have changed in ways I wished I hadn't, I also changed for the better in other ways. I appreciate the little things now in a way I never did BBI. I am more patient, with myself and others, recognizing as Philo of Alexandria said, "Be kind, for everyone you meet is fighting a great battle". I am not as quick to judge others, especially from appearances, because I know all too well how misleading that can be.
I've learnt a lot about who I am, how strong I am and about who my real friends are. Most people want to be around during the good times in our lives, but who at your side when you are scared, or sick or in pain? Who understands when you have to cancel plans at the last minute yet again? Who is willing to be with you, even when they can't make it better, but knows you need someone to talk to, or cry with, or laugh with? These are the people I treasure beyond telling, because we live in a society that judges us by what job we hold or what financial success we attain, and if judged by those standards, I would be be considered a failure in most eyes. I am on disability and my financial situation is tenuous at best. But there are people who see the value in me, the human being, the funny, kind, smart, caring person trapped inside all the illness. Most importantly, I've learned to see myself that way, to be proud of who I am and to know I have value as person. I can still love, laugh and be a support or inspiration to others, so while I may not always be able to do all I would like in a day, I can take comfort in the knowledge that I've done my best, and when all is said and done, can any of us, healthy or not, ask for more than that?
- - Maureen Hayes 2008 copyrighted
Wednesday, January 7, 2009
Back From Break
WOW, it has been awhile since I last posted. I wish I could say I was away for the holidays, but in truth things haven't been too well with me. I needed to take a break for health and personal reasons.
Those of you with chronic illness will understand. By it's very nature it flares up when it feels like it and there isn't always a lot that can be done other than wait it out. This time it really got to me emotionally. I was in a real blue funk for awhile and just didn't feel like posting when I felt like that. But, talking with a good friend made me realize that I needed to post, because that is the truth of being chronically ill. Not all times are good, we can't always think our way to happier times, and I would be being dishonest not to admit that I go to that place sometimes too. I write a lot about gratitude and self care, and I fully believe in both and practice them regularly, but I am not immune to bad times.
However, I am beginning to feel better, emotionally at least, and wanted to get back into the swing of things. I miss posting on Wordless Wednesday and Photo Hunt Saturdays and plan to get back to those this week or next.
I did have some fun over the holidays including:
I talked in my last post about needing to take a break from doctors appointments. Unfortunately my break is over and I have been going to doctor's each day. I have so many things going on, so many tests happening at once, plus my mother to tend to so the days are full once again with that. I have had two appointments (yesterday and today) with new specialists who listened and are taking seriously some of the things that have been wrong for awhile now. It gives me hope. I am changing from the internist I had been seeing, who I had written I was so unhappy with, back to one I had seen years ago whom I had liked. I am hopeful this will lead to a better handling of my overall health situation.
My girlfriend talked me into signing up for a yoga class at our local recreation center. I have to be very careful because I hyper extend easily and injure myself, but I am going to give it a try. I won't be able to do what everyone else can, but I will do what I can.
I don't believe in New Year's resolutions. I try my best throughout the year to take care of myself and improve in ways I can. Each time I fall down, I pick myself up and try again and that's good enough for me. I find the pressure of resolutions usually makes me fail, but just aiming to improve my health or outlook is more manageable, for me anyway.
I will post some photos of some of the fun stuff in the next day or so. I appreciate everyone who visits and reads my blog and the patience you show when I am away for an extended period of time. I hope that everyone had a good holiday season and that the New Year is starting off on a good note. I know the holidays are always a mixed bag for me. The religious part and the spirit of Christmas that brings out the best in others always makes me happy, but at the same time I also feel a sadness for those who aren't here. Let's just say I am happy to be in January and especially past my birthday.
Speaking of birthdays, I know I will get some heat for this, but I want your comments so I am bringing this on myself. . . when did we stop sending paper cards or calling someone for their birthday and begin thinking it is okay to e-mail or send just an e-card? I was offended at how many people took this way out. If it was a money issue, I would be understanding, but those that did it weren't the ones who are struggling financially. Am I the only one who thinks that a card or call is still in order?
Thanks again for allowing me to be real here, even when the reality isn't pretty. It helps to know that there are others who struggle and get through the bad times too. Blogging and meeting so many great people through it, has been a huge blessing. Well, I have rambled enough for one post - see ya again soon.
Those of you with chronic illness will understand. By it's very nature it flares up when it feels like it and there isn't always a lot that can be done other than wait it out. This time it really got to me emotionally. I was in a real blue funk for awhile and just didn't feel like posting when I felt like that. But, talking with a good friend made me realize that I needed to post, because that is the truth of being chronically ill. Not all times are good, we can't always think our way to happier times, and I would be being dishonest not to admit that I go to that place sometimes too. I write a lot about gratitude and self care, and I fully believe in both and practice them regularly, but I am not immune to bad times.
However, I am beginning to feel better, emotionally at least, and wanted to get back into the swing of things. I miss posting on Wordless Wednesday and Photo Hunt Saturdays and plan to get back to those this week or next.
I did have some fun over the holidays including:
- A day trip into NYC to look at the Rockefeller Center Christmas Tree and skating rink as well some of the store window displays. It was SO crowded the day we went in that it wasn't as much fun as I had hoped, but because I am a former city gal, I made a go of it anyway, taking my mother and friend on a tour of Grand Central Station, The Ford Foundation and Tutor City. Grand Central Station had a holiday laser light show on the ceiling in the main room that was a nice surprise treat.
- For my birthday a friend got us tickets to see "Oliver" at the John W. Engeman theater in Northport. The cast are all equity actors, so it really was Broadway caliber and we enjoyed it immensely. We went out to dinner after to celebrate my turning 42.
- I visited Old Bethpage Village Restoration for a "candle-light walk" with my upstairs neighbor and my mom. It is a village with original houses from the 1700 and 1800's and they had people in period costume at each location. They also had a huge outdoor bonfire, sing-a-longs, music on 18th century violins, as well as hot cider and cookies. It was a nice evening and luckily the weather cooperated.
- Local trips to see Christmas lights in the area. The neighborhood we live in really does it up right, and it was nice to walk (when weather and health permitted) or drive by, and see all the different displays.
- Midnight Mass on Christmas complete with the choir singing before for an hour - the highlight of my holiday for sure!
- Going to Hick's Nursery to see the Christmas displays and watching all the children ooh and aah over the animatronics display. They also had a brass quartet playing Christmas carols and gave bells to the little ones to play along. There is nothing as much fun as seeing Christmas through the eyes of a child.
- Going to see the tree and skating rink at Rexcorp in Uniondale at night.
- Spending time at my friends house after the holidays enjoying her family, good food and lots of laughs.
I talked in my last post about needing to take a break from doctors appointments. Unfortunately my break is over and I have been going to doctor's each day. I have so many things going on, so many tests happening at once, plus my mother to tend to so the days are full once again with that. I have had two appointments (yesterday and today) with new specialists who listened and are taking seriously some of the things that have been wrong for awhile now. It gives me hope. I am changing from the internist I had been seeing, who I had written I was so unhappy with, back to one I had seen years ago whom I had liked. I am hopeful this will lead to a better handling of my overall health situation.
My girlfriend talked me into signing up for a yoga class at our local recreation center. I have to be very careful because I hyper extend easily and injure myself, but I am going to give it a try. I won't be able to do what everyone else can, but I will do what I can.
I don't believe in New Year's resolutions. I try my best throughout the year to take care of myself and improve in ways I can. Each time I fall down, I pick myself up and try again and that's good enough for me. I find the pressure of resolutions usually makes me fail, but just aiming to improve my health or outlook is more manageable, for me anyway.
I will post some photos of some of the fun stuff in the next day or so. I appreciate everyone who visits and reads my blog and the patience you show when I am away for an extended period of time. I hope that everyone had a good holiday season and that the New Year is starting off on a good note. I know the holidays are always a mixed bag for me. The religious part and the spirit of Christmas that brings out the best in others always makes me happy, but at the same time I also feel a sadness for those who aren't here. Let's just say I am happy to be in January and especially past my birthday.
Speaking of birthdays, I know I will get some heat for this, but I want your comments so I am bringing this on myself. . . when did we stop sending paper cards or calling someone for their birthday and begin thinking it is okay to e-mail or send just an e-card? I was offended at how many people took this way out. If it was a money issue, I would be understanding, but those that did it weren't the ones who are struggling financially. Am I the only one who thinks that a card or call is still in order?
Thanks again for allowing me to be real here, even when the reality isn't pretty. It helps to know that there are others who struggle and get through the bad times too. Blogging and meeting so many great people through it, has been a huge blessing. Well, I have rambled enough for one post - see ya again soon.
Monday, December 22, 2008
A Day In The Life of Maureen
Happy Holidays all! I have had a rough couple of days, so I haven't posted in a bit. It seems no matter how long you have been ill, and no matter how many times you think you've learned your lessons, there are always new ones to learn.
I had a very frustrating Friday. My internist is not good, and I really need to find someone else, but I have been putting it off. I had a physical scheduled for Friday, and despite the bad weather here I headed off for it. My doctor was running late (so what else is new, right?), her office staff has been at war with one another for a few months now, I am not sure why, but it makes the whole experience really miserable. When I finally got back into a room, the nurse asked about my voice. Now I have been complaining about my this problem with my voice/breathing/throat for almost 2 years. No one will listen. Because my voice was particularly bad then the nurse seemed all interested. Of course she was unable to get a blood pressure reading on me (blamed it on the equipment), then she couldn't get a complete EKG (again, it MUST be the equipment). During all this the doctor came in and out twice and left to take cell phone calls without a word. Now I have been sitting there in just a robe for about an hour with basically nothing done. The doctor comes in and gives me a speech about exercising. She doesn't take any history on MY health problems, takes some general background on family, and listens to my heart and looks at my ears. Then she says something to the effect of "I know you want to get going because it is getting bad out there", as if I had asked her to rush. I have been hearing the staff discussing the fact that she was leaving for an hour to head to the hospital, so I guess I am being rushed out so she can get going. She wants me back in 2 weeks, so she can decide what blood work to run (which should have been done BEFORE I came for this appointment, it WAS a scheduled physical!), but of course she makes more money if she keeps having me back in. Can you tell I was less than pleased?
The roads were treacherous coming home and we had to make a few stops because we knew we probably weren't going to be able to get out again anytime soon. By the time we got in and got lunch it was late and I was exhausted physically and emotionally. I tried to nap, but the snow kept falling and I knew I had better try to get some of it cleared off the car, as well as a path to the car cleared and some de-icer down. Last year my mother fell two days before Christmas on ice and broke her shoulder. She is terrified of it happening again (who can blame her) and I feel responsible for making sure things are safe for her. Now you would think I would realize that I am not healthy enough to shovel snow. Especially heavy, wet, deep snow. But out I trouped with a shovel. After a half hour I was almost dead. I came in an immediately realized I had made a BIG mistake. I had trouble breathing, was hurting so badly the narcotics didn't even ease the pain and started running fever. Later on as I lay weeping on the couch, it all hit me - I am so much sicker than I was just a few years ago. I know it intellectually, I certainly feel it physically, but when I get treated like I did at the doctors that day, it makes me realize that people have absolutely no comprehension of what life is really like for me. Most of my doctors don't even care. When you try to explain you get looks like your crazy, lazy or making things up. It's exhausting to deal with. Then I go and do something stupid to myself, like trying to shovel, and I compound the problem.
Most of the time I am pretty good at setting limits on myself. I know fairly well what I can and cannot do at this point. Every once in a while, like Friday, I have to learn the hard way. I was in bed all weekend, fevers, pain and fatigue wracking my body and regret wracking my spirit. I like to think I am smarter than this, and most of the time I am. It is time for me to admit, once again, that there are more things I cannot do. I HATE admitting it, especially out loud, but I am not doing myself any favors by pretending it is different.
So this is a melancholy Christmas for me. I am grateful for all the blessings I do have, for the parts of my body that still work, for people who do understand and love me anyway - but I feel sad and angry for all I have lost, for what I continue to lose and mostly for the people (especially the doctors and medical professionals, but others as well) who just don't get it. I am sick of using my precious energy trying to make them understand. So my goal between now and the New Year is to have as little to do with them as I can. I am taking a break. I do have to go to the dentist today, still having a bad problem with swollen ligaments in my jaw that has to be addressed. I also have an appointment with a urologist tomorrow about the nephritis finding on my CAT scan. Other than those appointments, I am not dealing with the doctors until after Jan. 1st. My spirit needs a break and needs to be refreshed by the joy of Christmas. Then I will deal with the naysayers again. . .
My best wishes to all my readers for a happy holiday season and a new year filled with health, peace and joy!
I had a very frustrating Friday. My internist is not good, and I really need to find someone else, but I have been putting it off. I had a physical scheduled for Friday, and despite the bad weather here I headed off for it. My doctor was running late (so what else is new, right?), her office staff has been at war with one another for a few months now, I am not sure why, but it makes the whole experience really miserable. When I finally got back into a room, the nurse asked about my voice. Now I have been complaining about my this problem with my voice/breathing/throat for almost 2 years. No one will listen. Because my voice was particularly bad then the nurse seemed all interested. Of course she was unable to get a blood pressure reading on me (blamed it on the equipment), then she couldn't get a complete EKG (again, it MUST be the equipment). During all this the doctor came in and out twice and left to take cell phone calls without a word. Now I have been sitting there in just a robe for about an hour with basically nothing done. The doctor comes in and gives me a speech about exercising. She doesn't take any history on MY health problems, takes some general background on family, and listens to my heart and looks at my ears. Then she says something to the effect of "I know you want to get going because it is getting bad out there", as if I had asked her to rush. I have been hearing the staff discussing the fact that she was leaving for an hour to head to the hospital, so I guess I am being rushed out so she can get going. She wants me back in 2 weeks, so she can decide what blood work to run (which should have been done BEFORE I came for this appointment, it WAS a scheduled physical!), but of course she makes more money if she keeps having me back in. Can you tell I was less than pleased?
The roads were treacherous coming home and we had to make a few stops because we knew we probably weren't going to be able to get out again anytime soon. By the time we got in and got lunch it was late and I was exhausted physically and emotionally. I tried to nap, but the snow kept falling and I knew I had better try to get some of it cleared off the car, as well as a path to the car cleared and some de-icer down. Last year my mother fell two days before Christmas on ice and broke her shoulder. She is terrified of it happening again (who can blame her) and I feel responsible for making sure things are safe for her. Now you would think I would realize that I am not healthy enough to shovel snow. Especially heavy, wet, deep snow. But out I trouped with a shovel. After a half hour I was almost dead. I came in an immediately realized I had made a BIG mistake. I had trouble breathing, was hurting so badly the narcotics didn't even ease the pain and started running fever. Later on as I lay weeping on the couch, it all hit me - I am so much sicker than I was just a few years ago. I know it intellectually, I certainly feel it physically, but when I get treated like I did at the doctors that day, it makes me realize that people have absolutely no comprehension of what life is really like for me. Most of my doctors don't even care. When you try to explain you get looks like your crazy, lazy or making things up. It's exhausting to deal with. Then I go and do something stupid to myself, like trying to shovel, and I compound the problem.
Most of the time I am pretty good at setting limits on myself. I know fairly well what I can and cannot do at this point. Every once in a while, like Friday, I have to learn the hard way. I was in bed all weekend, fevers, pain and fatigue wracking my body and regret wracking my spirit. I like to think I am smarter than this, and most of the time I am. It is time for me to admit, once again, that there are more things I cannot do. I HATE admitting it, especially out loud, but I am not doing myself any favors by pretending it is different.
So this is a melancholy Christmas for me. I am grateful for all the blessings I do have, for the parts of my body that still work, for people who do understand and love me anyway - but I feel sad and angry for all I have lost, for what I continue to lose and mostly for the people (especially the doctors and medical professionals, but others as well) who just don't get it. I am sick of using my precious energy trying to make them understand. So my goal between now and the New Year is to have as little to do with them as I can. I am taking a break. I do have to go to the dentist today, still having a bad problem with swollen ligaments in my jaw that has to be addressed. I also have an appointment with a urologist tomorrow about the nephritis finding on my CAT scan. Other than those appointments, I am not dealing with the doctors until after Jan. 1st. My spirit needs a break and needs to be refreshed by the joy of Christmas. Then I will deal with the naysayers again. . .
My best wishes to all my readers for a happy holiday season and a new year filled with health, peace and joy!
Sunday, December 7, 2008
Another Lesson In Thankfulness
I am posting the following which I received in an e-mail, I have no idea who the author is, so if anyone knows, please get in touch so I can credit the right person!
Be thankful that you don't already have everything you desire.
If you did, what would there be to look forward to?
Be thankful when you don't know something,
for it gives you the opportunity to learn.
Be thankful for the difficult times.
During those times you grow.
Be thankful for your limitations,
because they give you opportunities for improvement.
Be thankful for each new challenge,
because it will build your strength and character.
Be thankful for your mistakes.
They will teach you valuable lessons.
Be thankful when you're tired and weary,
because it means you've made a difference.
It's easy to be thankful for the good things.
A life of rich fulfillment comes to those who
are also thankful for the setbacks.
Gratitude can turn a negative into a positive.
Find a way to be thankful for your troubles,
and they can become your blessings...
This is true for everyone, but especially important to remember when you battle a chronic illness. I know that I have learned so much through this journey that I might never have learned, and although I don't enjoy being ill, there are positive things that have come from it. I have met some wonderful people, both on-line and in "real" life. I have learned about talents and strengths I possess that I never knew I had. I have let go of perfectionism as my ideal.
I am heading into a challenging week. I have several doctors appointments, which have me worried. My mother has had continuing difficulties with her health since developing C-Diff back in August in the hospital. They are doing a colonoscopy on her on Thursday morning, so we have the prep to get through on Wednesday and then her test. I pray they can figure out what is wrong so she can get some relief. I have a new specialist on Friday for a possible problem with my kidneys. It never ends. So I need to re-read my own post and learn to take the challenges and change them into growing experiences! That doesn't mean I won't ask for your prayers in the meantime though. . .
Friday, December 5, 2008
Another Way To Enjoy Books
Everyone who knows me knows I LOVE to read. My idea of a perfect day includes some time curled up by myself with a good book. Unfortunately one of things I suffer with all too frequently is vertigo, which for me is made worse by reading. Sometimes an attack will only last a few hours, but other times they last for weeks, or even months. Those times have been trying in many ways, but especially because not being able to read is like a punishment for me. Of course books on tape, then CD and now download able to IPODS and MP3 players have come into existence, but they weren't around when I first started having this problem, and as much as I enjoy them, it isn't the same as being able to read a book myself.
I love everything about books, the feel of one in my hands, the cover art, the different fonts, the crisp pages, even the smell!! However I am grateful that these other options have become available for those times when I can't read a book for myself. I just discovered another wonderful option that I wanted to share with all of you. I was at the library yesterday and was walking past the books on CD section when I noticed something different. I stopped to investigate and saw that they have "playaway" audiobooks. Not sure what it was, I picked one up to investigate. This is the description from the cover "Playaway is the simplest way to listen to an audiobook on the go. Each Playaway comes pre-loaded with an audiobook, and batteries are included. Simply plug in earphones and enjoy. No cassettes or CD's. No downloads. there's nothing left to do but listen." What a terrific idea! They are like tiny little MP3 players and my library had an impressive selection of titles to choose from. I could learn a foreign language, read the latest bestseller or find almost any non-fiction subject that might interest me. I had no idea these existed! I knew I could download books from the Internet to my IPOD, but of course there is a charge, and it takes time, and sometimes the narrators are better than others. This is all done and ready to go, all I need to provide are the earphones, and since I can get them at the library, they are free!
Maybe you already know about them, but if you don't, they are definitely worth a look. I don't ever want to discourage people from actually reading books, I still think it is the best way to enjoy a story and to exercise your own imagination, but if health or time is an issue, this is a great tool! I immediately thought of what a terrific gift these would be for someone in the hospital or home bound. I had a dear friend who had to have surgery on her eyes for macular degeneration and wasn't allowed to lift her head for several weeks after surgery. This would have been a God-send, and a much more pleasant way to pass the time than just listening to the TV.
Anyway, to me, it was just one more reminder that no matter how "limited" I think I get by my illness, there is always a way around things. I am grateful that I have a library that carries these, as I imagine it could get expensive to buy them all the time. Please consider looking into them for yourself or as a gift for someone else! Happy Holidays!
I love everything about books, the feel of one in my hands, the cover art, the different fonts, the crisp pages, even the smell!! However I am grateful that these other options have become available for those times when I can't read a book for myself. I just discovered another wonderful option that I wanted to share with all of you. I was at the library yesterday and was walking past the books on CD section when I noticed something different. I stopped to investigate and saw that they have "playaway" audiobooks. Not sure what it was, I picked one up to investigate. This is the description from the cover "Playaway is the simplest way to listen to an audiobook on the go. Each Playaway comes pre-loaded with an audiobook, and batteries are included. Simply plug in earphones and enjoy. No cassettes or CD's. No downloads. there's nothing left to do but listen." What a terrific idea! They are like tiny little MP3 players and my library had an impressive selection of titles to choose from. I could learn a foreign language, read the latest bestseller or find almost any non-fiction subject that might interest me. I had no idea these existed! I knew I could download books from the Internet to my IPOD, but of course there is a charge, and it takes time, and sometimes the narrators are better than others. This is all done and ready to go, all I need to provide are the earphones, and since I can get them at the library, they are free!
Maybe you already know about them, but if you don't, they are definitely worth a look. I don't ever want to discourage people from actually reading books, I still think it is the best way to enjoy a story and to exercise your own imagination, but if health or time is an issue, this is a great tool! I immediately thought of what a terrific gift these would be for someone in the hospital or home bound. I had a dear friend who had to have surgery on her eyes for macular degeneration and wasn't allowed to lift her head for several weeks after surgery. This would have been a God-send, and a much more pleasant way to pass the time than just listening to the TV.
Anyway, to me, it was just one more reminder that no matter how "limited" I think I get by my illness, there is always a way around things. I am grateful that I have a library that carries these, as I imagine it could get expensive to buy them all the time. Please consider looking into them for yourself or as a gift for someone else! Happy Holidays!
Monday, November 24, 2008
The Good, the Bad and the Ugly
Wow, I have been one neglectful blogger!! I apologize to all of you who regularly check for new content, it really has been too long since I last posted something new. It's been a combination of factors from health to personal, and I have several rants started that at some point I might just post. . .
Anyway, I am still awaiting an answer on my thyroid biopsy (taken last Wed.) and have a few other critical health issues going on. Despite those things, I had a nice weekend. I met a funny, smart, kind woman who has become a new friend since moving to our diggs in October, and we got together on Saturday for tea and scones. She then took me around town and showed me where there are some great shops I didn't know about. It is so wonderful to live in an area where the people are friendly and kind, especially after where we've been living for the past year.
Saturday evening mom and I had a friend over for pizza and a movie (hey in these economic times a movie from the library and a pizza is a big night!). We watched one of my all time favorite film noir classics "Double Indemnity"! I never tire of a great film with snappy dialog and witty banter.
Sunday we tried a new parish close to home for Mass, which was very good. They just refurbished the church and it looked beautiful. After Mass, despite the freezing temperatures, we took a nice walk. I had promised my mom that I would bring her over to the area my friend had shown me on Saturday and let her see some of the shops for herself. We both love 5 & 10 cent stores (variety stores, whatever you call them where you live!). They have become a lost breed and I was so excited to discover one right here in town. We spent a good amount of time just browsing in there and discovering all the neat stuff they carry that you can't find anywhere anymore.
I've been a bit frustrated lately, between doctor's appointments and dealing with pharmacy and cable issues and the frustrations of living life with so many chronic illnesses, it's had me down. It was nice to have a weekend away from all that, with friends and family. Of course now I am paying (physically) for the activity, but once in awhile you've got to push yourself and pay for it later. I am suffering from vertigo, so I can't read or write a long post. Hopefully it will be a short bout this time.
So that's what new in my neck of the woods, what's up with YOU? I really want to know. . .
Anyway, I am still awaiting an answer on my thyroid biopsy (taken last Wed.) and have a few other critical health issues going on. Despite those things, I had a nice weekend. I met a funny, smart, kind woman who has become a new friend since moving to our diggs in October, and we got together on Saturday for tea and scones. She then took me around town and showed me where there are some great shops I didn't know about. It is so wonderful to live in an area where the people are friendly and kind, especially after where we've been living for the past year.
Saturday evening mom and I had a friend over for pizza and a movie (hey in these economic times a movie from the library and a pizza is a big night!). We watched one of my all time favorite film noir classics "Double Indemnity"! I never tire of a great film with snappy dialog and witty banter.
Sunday we tried a new parish close to home for Mass, which was very good. They just refurbished the church and it looked beautiful. After Mass, despite the freezing temperatures, we took a nice walk. I had promised my mom that I would bring her over to the area my friend had shown me on Saturday and let her see some of the shops for herself. We both love 5 & 10 cent stores (variety stores, whatever you call them where you live!). They have become a lost breed and I was so excited to discover one right here in town. We spent a good amount of time just browsing in there and discovering all the neat stuff they carry that you can't find anywhere anymore.
I've been a bit frustrated lately, between doctor's appointments and dealing with pharmacy and cable issues and the frustrations of living life with so many chronic illnesses, it's had me down. It was nice to have a weekend away from all that, with friends and family. Of course now I am paying (physically) for the activity, but once in awhile you've got to push yourself and pay for it later. I am suffering from vertigo, so I can't read or write a long post. Hopefully it will be a short bout this time.
So that's what new in my neck of the woods, what's up with YOU? I really want to know. . .
Thursday, November 13, 2008
True Gratitude!
One of my favorite things about blogging are the other incredible bloggers you meet. I participate in Wordless Wednesday and Photo Hunt Saturdays, and through these forums have met bloggers from every country and walk of life. One of my favorites is Terry, from the blog Notes From One Mom. We "met" through our comments on each others photos. Terry, having read my profile, shared with me that she is the caregiver to her husband, who has had a stroke, as well as a patient with a chronic illness herself. I love her writing and her upbeat, positive outlook on life. She had a post on her site about her husband that she had written that touched me so deeply, I asked her permission to share it on my blog. I think it is such a powerful expression of love and understanding, and it certainly made me realize that despite our illness, the ones who really know and love us, see the whole person--not the illness or disability. I hope you will find it as beautiful as I did, and perhaps you will be inspired to write to someone in your life who you are thankful for.
Without further ado, here is the entire post:
Thursday, November 6, 2008
Thursday Thirteen: My Husband, My Hero
This is the month when giving thanks is on our minds. Having almost lost my husband more than once in the past thirteen years, I am grateful for every single day that he is still with us. He is my hero and here are my top thirteen reasons why.
1. He is a survivor. He survived rheumatic fever as an infant, polio as a child, 3 heart attacks before he was 50 and a stroke before he was 60.
2. He doesn't know the meaning of "can't." In between his childhood ailments and his adult illnesses, he played baseball, hockey, college and professional football. He even ran the Marine Corp Marathon when he was 40.
3. He never, never gives up. No matter what life throws at him, he is always positive. His first words after his stroke were, "I love you." His next sentence, although it took 3 days to compose and several minutes and some coaching to voice, was, "It's going to be alright."
4. He is a funny man. He loves to make people laugh. Nowadays he doesn't tell the jokes but he will still appreciate and laugh at yours.
5. I came into his life as a package deal, complete with three sons. He has loved them, helped to raise them, disciplined them, guided them, supported them in the good times and not so good times, and has always, always been there for them.
6. He is driven. Probably a little too driven at times, but that determination is now what enables him to deal with his disabilities on a daily basis. It's what got him walking after his stroke. It's what got him out on the golf course again with a one-arm golf swing. It's what gets him going every single day.
7. He is a supporter to those around him, whether it be me, our children, friends or neighbors, he always encourages those around him to succeed.
8. Not a day goes by, probably not more than a couple of hours, that he doesn't tell me how much he loves me and appreciates me.
9. He is the designated dishwasher loader/unloader in the family. And if I ask him, he will also do floors :)
10. Since his stroke in 2004, he had tried unsuccessfully to read a book - until this summer when he read the New Testament. He worked at it every single day and was as excited as a child who had mastered riding his first bicycle when he finished.
11. He loves life. Although much different than it was or than he expected it would ever be, he is content.
12. He notices and appreciates the details. Coffee and freshly baked muffins, a drive around the island, a walk on the beach, he takes pleasure in the small things that others often take for granted.
13. Last, but not in any way the least, he loves the Lord. And he knows the Lord loves him.
Posted by One Mom at 1:02 AM 6 comments Links to this post
Labels: giving thanks, husband, stroke survivor, Thursday Thirteen
Without further ado, here is the entire post:
Thursday, November 6, 2008
Thursday Thirteen: My Husband, My Hero
This is the month when giving thanks is on our minds. Having almost lost my husband more than once in the past thirteen years, I am grateful for every single day that he is still with us. He is my hero and here are my top thirteen reasons why.
1. He is a survivor. He survived rheumatic fever as an infant, polio as a child, 3 heart attacks before he was 50 and a stroke before he was 60.
2. He doesn't know the meaning of "can't." In between his childhood ailments and his adult illnesses, he played baseball, hockey, college and professional football. He even ran the Marine Corp Marathon when he was 40.
3. He never, never gives up. No matter what life throws at him, he is always positive. His first words after his stroke were, "I love you." His next sentence, although it took 3 days to compose and several minutes and some coaching to voice, was, "It's going to be alright."
4. He is a funny man. He loves to make people laugh. Nowadays he doesn't tell the jokes but he will still appreciate and laugh at yours.
5. I came into his life as a package deal, complete with three sons. He has loved them, helped to raise them, disciplined them, guided them, supported them in the good times and not so good times, and has always, always been there for them.
6. He is driven. Probably a little too driven at times, but that determination is now what enables him to deal with his disabilities on a daily basis. It's what got him walking after his stroke. It's what got him out on the golf course again with a one-arm golf swing. It's what gets him going every single day.
7. He is a supporter to those around him, whether it be me, our children, friends or neighbors, he always encourages those around him to succeed.
8. Not a day goes by, probably not more than a couple of hours, that he doesn't tell me how much he loves me and appreciates me.
9. He is the designated dishwasher loader/unloader in the family. And if I ask him, he will also do floors :)
10. Since his stroke in 2004, he had tried unsuccessfully to read a book - until this summer when he read the New Testament. He worked at it every single day and was as excited as a child who had mastered riding his first bicycle when he finished.
11. He loves life. Although much different than it was or than he expected it would ever be, he is content.
12. He notices and appreciates the details. Coffee and freshly baked muffins, a drive around the island, a walk on the beach, he takes pleasure in the small things that others often take for granted.
13. Last, but not in any way the least, he loves the Lord. And he knows the Lord loves him.
Posted by One Mom at 1:02 AM 6 comments Links to this post
Labels: giving thanks, husband, stroke survivor, Thursday Thirteen
Monday, November 10, 2008
Lemonade Award
I am thankful to Jeanne, of Jeanne's Endo Blog for awarding this blog the Lemonade Award!
This award is given to blogs demonstrating a attitude of gratitude.
Jeanne's Endo Blog is full is full of practical, helpful information-not just on endometriosis, but on a variety of chronic illnesses and other topics. Jeanne is a dedicated, thorough and tireless advocate, whose passion is an inspiration. She consistently writes thought provoking articles that touch many and I am very honored that she has chosen this blog to receive this award!
In keeping with the awards tradition, I will now honor 10 other blogs with the lemonade award, as follows:
1. Getting Closer To Myself
2. My Chronic Life
3. Renee's Reflections
4. Harvesting Hope From Heartache
5. My Life Works Today
6. Notes from One Mom
7. Life in the Autoimmune Lane
8. Rhymes With Migraine
9. Daisy The Curly Cat
10. Rambling & Writings
Thursday, November 6, 2008
Bring on the Kleenex
Okay first I have to admit, I wasn't planning to post today. I am not feeling well and I thought, so I'll skip a day, it'll be alright. It isn't like what I have to say changes the world or anything! Then I was reading posts on BlogBlast For Peace, and since I am a new to the blogosphere I didn't know about this and felt intimidated. Another reason to sit the day out.
Then I got a phone call that changed everything. I haven't posted about this before so I need to give you some background information. I am the youngest of four children. My oldest brother, Bob, who is 51 yrs.old, has always been my "big" brother. He was the one who looked after me when I was younger, who chased the wrong kid down the block and threatened to kill him for slapping me so hard he left a hand print on my back when I was 8 years old. He helped me through our parents divorce, my teen years and first starting out on my own. He didn't always like all my choices, but he had my back and I knew it.
This January, while I was going through the battle of my life health-wise, and mom and I were basically homeless trying to get re-established here in New York with doctors, a place to live, etc. . my big brother suffered a heart attack. His wife, knowing we had a lot going on didn't call right away. They told her he was going to be fine, they put a stent in and he would be home by the weekend, they'd call us then. But he wasn't fine. He developed something called A.R.D.S. (Acute Respiratory Distress Syndrome) and lapsed into a coma before we even knew what had happened.
It would be over five months before he battled his way out of that coma. The doctors and nurses weren't hopeful he'd make it, even less that he recover to any degree if he did. He was on a ventilator, dialysis, feeding tubes and was paralyzed for his own protection. When we visited he had so much equipment hooked up it was hard to find a place you could touch him. He was bloated beyond recognition from the medications and the infections.
My brother is a wonderful husband and father to two boys, one who finished his senior year during all of this, and the other who is in middle school. His wife spent the first 6 months traveling over 2 hours each way everyday no matter the weather to be there with him. She never gave up hope, no matter how heartless or cruel the staff at the hospital or rehabilitation facility were. Mom and I went to visit as often as health would allow, usually every other day. It was grueling and painful.
Finally, about a week after Easter he woke up from the coma. He couldn't speak, eat, move and had no idea what had happened, but he was back. Eventually he was moved to a rehabilitation facility closer to his wife and kids, where he has remained since early June.
This afternoon the phone rang and it turned out to be my brother (we have never been able to speak with him on the phone, he couldn't hold it or dial it!). He will be going home in a few weeks!!! He won't ever be the way he was before all this happened, BUT HE IS GOING HOME!! My big brother will finally get to be with his wife and kids, back in the home they have built for 27 years together, through the good and the bad.
My very good friend, who also happens to be a priest, says there is no such thing as coincidence, that coincidence is merely God choosing to remain in the background. Well, thank you God for using BlogBlast For Peace to bring Bob home! I ask for everyone who reads this to please pray for my brother and for his family, they have a long road ahead of them. They have financial problems beyond telling, physical hurdles and adjustments we can't even know of yet--but Bob is not only alive, he is well and my heart is filled with joy and yes, PEACE!
Then I got a phone call that changed everything. I haven't posted about this before so I need to give you some background information. I am the youngest of four children. My oldest brother, Bob, who is 51 yrs.old, has always been my "big" brother. He was the one who looked after me when I was younger, who chased the wrong kid down the block and threatened to kill him for slapping me so hard he left a hand print on my back when I was 8 years old. He helped me through our parents divorce, my teen years and first starting out on my own. He didn't always like all my choices, but he had my back and I knew it.
This January, while I was going through the battle of my life health-wise, and mom and I were basically homeless trying to get re-established here in New York with doctors, a place to live, etc. . my big brother suffered a heart attack. His wife, knowing we had a lot going on didn't call right away. They told her he was going to be fine, they put a stent in and he would be home by the weekend, they'd call us then. But he wasn't fine. He developed something called A.R.D.S. (Acute Respiratory Distress Syndrome) and lapsed into a coma before we even knew what had happened.
It would be over five months before he battled his way out of that coma. The doctors and nurses weren't hopeful he'd make it, even less that he recover to any degree if he did. He was on a ventilator, dialysis, feeding tubes and was paralyzed for his own protection. When we visited he had so much equipment hooked up it was hard to find a place you could touch him. He was bloated beyond recognition from the medications and the infections.
My brother is a wonderful husband and father to two boys, one who finished his senior year during all of this, and the other who is in middle school. His wife spent the first 6 months traveling over 2 hours each way everyday no matter the weather to be there with him. She never gave up hope, no matter how heartless or cruel the staff at the hospital or rehabilitation facility were. Mom and I went to visit as often as health would allow, usually every other day. It was grueling and painful.
Finally, about a week after Easter he woke up from the coma. He couldn't speak, eat, move and had no idea what had happened, but he was back. Eventually he was moved to a rehabilitation facility closer to his wife and kids, where he has remained since early June.
This afternoon the phone rang and it turned out to be my brother (we have never been able to speak with him on the phone, he couldn't hold it or dial it!). He will be going home in a few weeks!!! He won't ever be the way he was before all this happened, BUT HE IS GOING HOME!! My big brother will finally get to be with his wife and kids, back in the home they have built for 27 years together, through the good and the bad.
My very good friend, who also happens to be a priest, says there is no such thing as coincidence, that coincidence is merely God choosing to remain in the background. Well, thank you God for using BlogBlast For Peace to bring Bob home! I ask for everyone who reads this to please pray for my brother and for his family, they have a long road ahead of them. They have financial problems beyond telling, physical hurdles and adjustments we can't even know of yet--but Bob is not only alive, he is well and my heart is filled with joy and yes, PEACE!
Monday, November 3, 2008
Is It Just ME?
Something that has come up over and over again during all my time with chronic illness is how to handle scheduling when your life isn't always predictable. I am finding it an issue once again, in the personal realm of things this time.
I try to be upfront with people about my illness. I find it makes it easier to find out right away if they can handle it or not, because frankly I have reached a point in life where I just don't have the time or energy to waste on those who can't understand. I recently moved (as I blogged about earlier this month) and so have come to meet some new people. I am still going through a lot of sickness at the moment, stuff in addition to my regular chronic illnesses. I am seeing an infectious disease doctor, I have CT scan scheduled for Wednesday and a procedure at the GYN this afternoon. On top of all of this, my mother has developed a re-occurrence of C. Diff, which she contracted in the hospital in late Aug./early Sept. We have a lot going on.
I met someone who had asked me to get together and I explained that the day in question was free at the moment, but that between not feeling well, and waiting to hear when tests (like todays GYN visit or the CAT scan) would happen, that might change. I felt I was being clear and honest. Last Thursday when I spoke to the GYN and found out I had to schedule this procedure today, I let my friend know that today wouldn't be a good time for getting together. This person went ahead and got tickets to a hockey game for tonight. I got a phone message yesterday to the effect that he hoped I would be able to make it since my doctor was at 4pm (which isn't the right time, but still. . .) and the game would start around 7pm and we could "catch some dinner before". Now I don't know about you, but I am not particularly fond of having a GYN procedure, hopping off the table and into rush hour traffic to go meet someone whom I don't know well, and then sitting through a hockey game. Another night I would love to do this. Had I not been clear when I told him that I had a doctor appointment scheduled for today I would feel guilty. Instead I feel angry and a bit manipulated.
It's a circumstance I've become too familiar with over the years. People hear what they want to hear, and then make you out to be the bad guy when things don't go as planned. It is disappointing enough to have to bow out of plans you would really like to keep, without the added guilt that goes along with this sort of behavior. I know the tickets weren't cheap. They also probably weren't easy to get on short notice. I just wish that instead of getting them and telling me about it after the fact, I had been consulted.
Do others find that even when they try to be open and honest about their health and the limits it puts on them, others seem to expect more than you can deliver? How do you handle this? I want to make new friends and keep myself open to new experiences, but I don't want to feel like a bad person when my body simply isn't cooperating. Any thoughts?
I try to be upfront with people about my illness. I find it makes it easier to find out right away if they can handle it or not, because frankly I have reached a point in life where I just don't have the time or energy to waste on those who can't understand. I recently moved (as I blogged about earlier this month) and so have come to meet some new people. I am still going through a lot of sickness at the moment, stuff in addition to my regular chronic illnesses. I am seeing an infectious disease doctor, I have CT scan scheduled for Wednesday and a procedure at the GYN this afternoon. On top of all of this, my mother has developed a re-occurrence of C. Diff, which she contracted in the hospital in late Aug./early Sept. We have a lot going on.
I met someone who had asked me to get together and I explained that the day in question was free at the moment, but that between not feeling well, and waiting to hear when tests (like todays GYN visit or the CAT scan) would happen, that might change. I felt I was being clear and honest. Last Thursday when I spoke to the GYN and found out I had to schedule this procedure today, I let my friend know that today wouldn't be a good time for getting together. This person went ahead and got tickets to a hockey game for tonight. I got a phone message yesterday to the effect that he hoped I would be able to make it since my doctor was at 4pm (which isn't the right time, but still. . .) and the game would start around 7pm and we could "catch some dinner before". Now I don't know about you, but I am not particularly fond of having a GYN procedure, hopping off the table and into rush hour traffic to go meet someone whom I don't know well, and then sitting through a hockey game. Another night I would love to do this. Had I not been clear when I told him that I had a doctor appointment scheduled for today I would feel guilty. Instead I feel angry and a bit manipulated.
It's a circumstance I've become too familiar with over the years. People hear what they want to hear, and then make you out to be the bad guy when things don't go as planned. It is disappointing enough to have to bow out of plans you would really like to keep, without the added guilt that goes along with this sort of behavior. I know the tickets weren't cheap. They also probably weren't easy to get on short notice. I just wish that instead of getting them and telling me about it after the fact, I had been consulted.
Do others find that even when they try to be open and honest about their health and the limits it puts on them, others seem to expect more than you can deliver? How do you handle this? I want to make new friends and keep myself open to new experiences, but I don't want to feel like a bad person when my body simply isn't cooperating. Any thoughts?
Friday, October 31, 2008
The Caregiver Role
As I have mentioned before, I live with my 75 year old mother, which is a blessing for us both. Shortly before I began blogging, my mother had been hospitalized for 10 days and had developed C. difficile, an infection in her intestines, while in the hospital. Well, the C. diff has returned. This is bad for mom, but also for me. With my multiple illnesses, and especially being on hydrocortisone therapy, I am very vulnerable to catching infections. When mom had this infection the first time, I started to manifest symptoms of the illness and was put on an antibiotics prophylactically because the gastroenterologist was concerned about the possible effect to me due to my inability to tolerate the antibiotics that normally treat this infection, as well as the fact that I take pain medications that slow the movement in my bowel down, making the bug live longer in my system.
The other wonderful thing about C. diff is that the only thing that kills it is bleach. You can't use antibacterial wipes to clean up in the bathroom or Purell on your hands. Since mom and I share a bathroom, that means constant cleaning with bleach, as well as vigorous hand washing with hot water and soap for no less than 30 seconds each time you use the restroom. Well, at home that isn't so hard to do, but try that in a public restroom. Many times you can't even find soap, let alone hot water or something to dry your hands on. Even at home, there is the joy of standing there in the middle of night, trying not to wake up while you wait for the water to get warm and you start to clean and count.
My poor mom has the worst of it of course, but it is another reminder that I cannot ever just be caregiver, I have to always worry about how things affect my own health. I need to try to stay healthy so I can care for mom. She feels guilty exposing me to an infection she didn't cause. I guess the apple really doesn't fall far from the tree in this case!
I am blessed, to still have my mother and to be able to help care for her as she has done for me for my whole life. Still, it doesn't make it easy to handle the extra cleaning and the worry, but given the alternative I am will happily deal with both.
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.
Saturday, September 27, 2008
Illness And Moving And Caregiving. . .OH MY!!!
Hopefully someone else out there has the same silly sense of humor and gets the post title reference to "lions and tigers and bears, OH MY!! I'm a little punchy with all that has been going on around here lately.
For starters, my mom has been ill for awhile. The 2 weeks before I started this blog, she was hospitalized for 10 days. Since I am the only caregiver for her, it was a very stressful time for us both. She is home now, but has developed another infection requiring us to make multiple doctors visits. The antibiotic which she needs for her infection increases the chances of her C-Diff returning, so we have our fingers crossed that we don't begin that battle all over again!
In the midst of all this we are moving in 3 days! I know, why make something simple when you can complicate it, right?!! Seriously, this move will be a good thing for us if we live through it! We have been in a very bad living situation for almost a year now, and it has affected our health and emotional well being, so once the stress of the actual move is over, it will be a definite benefit in our lives. The problem of course is, how to get to the better place without killing ourselves in the process. Well, I must confess I am doing something I have NEVER done before, and I've moved a lot of times -- I've not only hired movers to move us, but to pack us as well and to help with unpacking. True, money is very tight, and it certainly wasn't the cheapest option, but given the circumstances I realized that my responsibility is to my mother and to myself to give us the best chance of remaining as healthy as possible through all of this. For me the answer was I needed help. Unfortunately we don't have friends and family nearby who would be available to call on, so I did the next logical thing, I called on professionals. I know I had a hard time accepting that I needed the help, and justifying the expense when we are so strapped, but when I realized what it would cost me physically to try to do everything on my own, I realized I was being proud and selfish. That wasn't easy for me to admit. It is still hard to admit I cannot do everything all the time, and this is after 30 years of living with chronic illness and having to learn to lose pieces of myself that I valued and defined myself by for so long. But the reason I am writing this personal stuff in a public post, is that I know it is something that all of us, whether we are the sick person or the caregiver, go through. I want to let you know that you aren't alone in feeling frustrated that you can't do all the things you would like to, or that you used to be able to. But, that said, I also want you to know that you are learning new skills all the time and growing as a result.
Learning to admit I need help, and especially learning to accept help when it was offered has been a huge blessing in my life, though I went into it kicking and screaming in the beginning. Now I realize that it doesn't make me a failure to reach out when I need to, and it helps those around me to to do things that are really needed and meaningful, and that makes them feel good and needed. Also, it has taught me that I don't have to do everything to be a good person (that terrible disease of perfectionism that lingered with me for so long!), that I am a good person just as I am.
Now the week wouldn't be complete if I didn't get ill as well! Unfortunately I am pretty sick at the moment too. But instead of pushing myself to keep going until I drop (like the old perfectionist would have!), I am taking care of myself and doing small things to make the move go more smoothly on both ends. Instead of moving tons of things over before the move day by myself, I took some time to think about what we really need right away. The first thing that popped into my mind was the bathroom -- LOL!! So, I made sure I had a shower curtain and liner up, some toilet paper out, towels, hand soap and essentials like toothbrushes, toothpaste and the like. This way we can just take out time getting the non-essential stuff set up as we both feel up to it. In the meantime, we can shower and do all of the daily functions without trying to open a million boxes to find things. All of this took less than hour between grabbing what we would need from the old place and setting it up in the new place. But the peace I feel at knowing it is done is worth the effort. And I still had time to nap, take medicine and care for mom!
Are there still things that need to be done, OH YES, but instead of panicking I am addressing each item and deciding what is really important and what I can realistically handle given how I am feeling and what mom is needing in terms of care. It is a delicate balance. I know that I will be freaked out when the movers pack us. I am sure there will be things I forget, but I also know that I have truly tried to do what is best not only for myself, but for my mother, and in the end that's what really matters. Everything else will get done in God's time, which is always the right time anyway!
So, if you have any good tips for moving without drama, or caring for another while you are feeling ill yourself, please feel free to share them with me. I don't know it all and am always open to learning from others walking this path too. And if you are still struggling with asking for, or accepting help, try to remember that you can be a blessing to another just by needing that help. You aren't weak or bad, you are simply in need at the moment. Of course it is important to pass that help along when you are feeling better, remember we all need to "pay it forward"!
Please be patient with me during the next few days. I will be without internet service for 2 days next week, but as soon as I am back on-line I will be posting again and letting you know how it all went. Before I sign off today I want to thank Lisa Copen of Rest Ministries for including one of my posts on Being a Good Friend Even When We Don't Feel Well as a Guest Blogger in the Invisible Illness Week Blog. If it hadn't been for Lisa, and IIAW, this blog wouldn't exist. I know how much the whole week meant to me personally and to many of you as well. Thanks to everyone involved for helping so many of us in so many ways!
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