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Monday, September 28, 2015
Sunday, September 20, 2015
Retiring the blog for now!
I will be starting a FACEBOOK page/blog in the very near future. I am confident I will be able to continue reaching other people who suffer from a serious, chronic illness. I hope to help make a difference while trying to navigate my own way through this often difficult journey!
I wish I never had to be on this journey in the first place, but since I'm here…..I am going to run this race to the best of my ability. I'll post a link here once I'm up and running a new page on Facebook. I will keep this site open, and I may even pop in from time to time.
I wish I never had to be on this journey in the first place, but since I'm here…..I am going to run this race to the best of my ability. I'll post a link here once I'm up and running a new page on Facebook. I will keep this site open, and I may even pop in from time to time.
Monday, July 6, 2015
really quick update July 2015
I haven't blogged very much this summer. I have had company for several weeks, a few little trips, kids out of school, and summer fun to keep me busy. I have been working on a post coming soon……"LONELINESS with Chronic Illness". It's taking me a few weeks to compose, but I'll post it soon.
My summer began with a bang! I had multiple WONDERFUL days in a row. It was amazing. I had little pain during those days. (of course, remember, my 'wonderful' would probably be 'horrible' to most people). I was able to take the kids out to lunch, shopping, and even in our pool this year. All of those things were only distant memories for us the last several summers. I remember just praying and hoping that I would one day get to take my kids to a few fun events during the summer just one more time!!! I feel like I'm living in a dream! I have many, many limitations, very difficult days, pain, and dizziness. However, just getting to be out and about on my better days has refreshed my SOUL!
I have struggled off and on this summer. I'll have a few wonderful days then BAM! it all falls apart for a day or even a week. I can get sick at the drop of a hat, with no warning, no reason, and no rhythm. This never ceases to frustrate me. No one likes to have to change their plans or spend the afternoon struggling to do basic life skills. I am not sure I'll ever quite accept this phenomenon, but it doesn't quite crush me quite as much as before. I am able to walk around the block on my good days, and I'm still able to cook very easily. That's got to be my favorite new ability. I do have to take a lot of breaks since I still cannot stand super long, but I've been back to making our food from scratch and LOVING IT!
I did get a little good news this week. Since March my pacemaker use has dropped by 70%. I knew my heart rate had been going up, especially at night, but I had no idea I was now using my pacemaker so much less. It's the lowest rate since I got it back in Jan. of 2013. The higher heart rate at night might be a concern if it continues to rise, but for now, it's exciting to not have to depend on the device to regulate my heart rate! Good news indeed!!!!
I'm planning a BIG family trip in the next few days. I'm a little nervous because some of my symptoms have returned more frequently than normal. But we are going no matter what….and I will have a BLAST!!!! I'm very excited to not only have gotten to plan a trip, but to know that I GET TO GO, TOO! I can only walk around for a little bit, but the family is ready to help me, take lots of breaks, keep me hydrated, carry my foot stool and pills, and keep me cool. They are so accommodating and never seem to let my disability bother them. (or at least they are good at keeping it to themselves) :)
So far, this will be a summer to remember because I've gotten to LIVE and enjoy every single little moment. After all, I'm pretty sure that's what life is really about. STOP AND SMELL THE ROSES every chance you get.
My summer began with a bang! I had multiple WONDERFUL days in a row. It was amazing. I had little pain during those days. (of course, remember, my 'wonderful' would probably be 'horrible' to most people). I was able to take the kids out to lunch, shopping, and even in our pool this year. All of those things were only distant memories for us the last several summers. I remember just praying and hoping that I would one day get to take my kids to a few fun events during the summer just one more time!!! I feel like I'm living in a dream! I have many, many limitations, very difficult days, pain, and dizziness. However, just getting to be out and about on my better days has refreshed my SOUL!
I have struggled off and on this summer. I'll have a few wonderful days then BAM! it all falls apart for a day or even a week. I can get sick at the drop of a hat, with no warning, no reason, and no rhythm. This never ceases to frustrate me. No one likes to have to change their plans or spend the afternoon struggling to do basic life skills. I am not sure I'll ever quite accept this phenomenon, but it doesn't quite crush me quite as much as before. I am able to walk around the block on my good days, and I'm still able to cook very easily. That's got to be my favorite new ability. I do have to take a lot of breaks since I still cannot stand super long, but I've been back to making our food from scratch and LOVING IT!
I did get a little good news this week. Since March my pacemaker use has dropped by 70%. I knew my heart rate had been going up, especially at night, but I had no idea I was now using my pacemaker so much less. It's the lowest rate since I got it back in Jan. of 2013. The higher heart rate at night might be a concern if it continues to rise, but for now, it's exciting to not have to depend on the device to regulate my heart rate! Good news indeed!!!!
I'm planning a BIG family trip in the next few days. I'm a little nervous because some of my symptoms have returned more frequently than normal. But we are going no matter what….and I will have a BLAST!!!! I'm very excited to not only have gotten to plan a trip, but to know that I GET TO GO, TOO! I can only walk around for a little bit, but the family is ready to help me, take lots of breaks, keep me hydrated, carry my foot stool and pills, and keep me cool. They are so accommodating and never seem to let my disability bother them. (or at least they are good at keeping it to themselves) :)
So far, this will be a summer to remember because I've gotten to LIVE and enjoy every single little moment. After all, I'm pretty sure that's what life is really about. STOP AND SMELL THE ROSES every chance you get.
Monday, May 4, 2015
12 Things about my Illness you probably didn't know!
Here are a few things about my particular illness and illness journey that you probably don't know!
1) I cannot sing. Ok, I could never 'sing'....carry a tune, but now I am unable to sing except for a few words before I feel very sick. This is a breathing issue. I've tried singing sitting down, but could never sing standing up. My kids tell me this one isn't a curse...but a blessing for everyone else.... Haha, they are learning to see silver linings.
2) When we go out to eat, I only go to places that have booths. I have to sit with my legs elevated (especially when eating) and doing that in a hard chair is not only uncomfortable, but makes my legs fall asleep.
3) 4-5 times a year I lose all the hair on my arms. It grows back just in time to lose it again. This is due to poor circulation and venous pooling. I also lose large chunks of the hair on my head from the hypoperfusion, but with all my curls, I can cover it up well.
4) I would prefer to walk around than have to stand in one place. If I keep the blood moving and circulating, I can keep it going to my heart and brain. The second I stop moving, it slowing begins to pool and produce the debilitating hypoperfusion. At that point, the slurred speech, confusion, and dizziness will set in.
5) I can drive a very low lying car for 15-20 minutes (on a good day). We had to buy a small car just so that my legs won't dangle at all...which speeds up the pooling. I've enjoyed driving myself more than almost anything else! This has been so freeing.
6) I've developed an unusual amount of food allergies and intolerances over the last 3 years. I was given a very 'scientific' reason for this phenomenon, that I do not quite understand. It has made eating quite a challenge, and I'm probably not very much fun to invite over for a dinner party! :)
7) I carry a small portable foot stool with me everywhere I go. I still cannot sit with my legs down, so I bring along a stool to put my legs up in public. I must admit it's very difficult for me to ignore the istimga that goes along with propping up my feet in public. I've had a few comments along the way, and I'm still learning to take them in stride.
8) I got a special type of pacemaker 2 years ago that not only paces my heart, but has a blood pressure sensor to help prevent passing out from sudden changes in blood pressure. However, because the second feature kept going off all the time, and was very uncomfortable and painful, I had the second feature turned off. Now, my pacemaker is used just for pacing my heart.
9) I have a 'frozen shoulder' that I will never be able to raise again without surgery. After my pacemaker surgery, my already 'bum' shoulder became very stiff with increased scar tissue. After years of being bedridden, I didn't find many occasions to raise my arms much. As a result, the shoulder became frozen. After months of physical therapy, the doctor said the only way to 'unfreeze' the shoulder is by cutting the scar tissue out in surgery. (I already had a joint issue in that shoulder prior to getting sick). I cannot raise my left hand over my head, behind my back, or out to the side. Surgery for me is out of the question.
10) Sugar is my enemy. About 2 years ago, every time I ate white sugar, my heart rate would go crazy and then into an irregular arrhythmia. This was an unwanted side effect especially while being bedridden. I can eat a very little here and there before it triggers the heart. The key is knowing how much before it begins. Like any warm-blooded female, no sugar is NOT an option!
11) I developed a condition called: Gastroparesis. This means that I cannot digest my food well, and after a 6 hour test, I still had more than 75% of my meal undigested in my stomach. That has produced a lot of unwanted symptoms and digestive issues, as you can imagine. This does seem to come and go for me. I can be doing really well, then out of the blue not be able to eat well for weeks on end. This has been frustrating to deal with! I think if I had lost some weight because of it, I would have accepted it a little easier. :)
12) A good day for me today is what a really bad day would have been for me 4 years ago! I often have 'great days' now. But I realized that my new great days are probably not the same definition that most people would categorize a good day. I haven't had a day go by that I didn't have a major limitation in normal actives in 4 years. I have to watch my heart rate and blood pressures very closely with cooking, showering, walking, exercising, and driving. I can never bend over, stand up quickly, or lie flat. My legs must remain elevated no matter what my activity may be that day. I have to guzzle fluids all day, watch my diet carefully, and not be in the heat. Even with all these precautions, I will still have to deal with head rushes, dizziness, shortness of breath, chest pain, facial flushing, digestive issues and more on any given day. But this is still what I would call a 'good day'!
1) I cannot sing. Ok, I could never 'sing'....carry a tune, but now I am unable to sing except for a few words before I feel very sick. This is a breathing issue. I've tried singing sitting down, but could never sing standing up. My kids tell me this one isn't a curse...but a blessing for everyone else.... Haha, they are learning to see silver linings.
2) When we go out to eat, I only go to places that have booths. I have to sit with my legs elevated (especially when eating) and doing that in a hard chair is not only uncomfortable, but makes my legs fall asleep.
3) 4-5 times a year I lose all the hair on my arms. It grows back just in time to lose it again. This is due to poor circulation and venous pooling. I also lose large chunks of the hair on my head from the hypoperfusion, but with all my curls, I can cover it up well.
4) I would prefer to walk around than have to stand in one place. If I keep the blood moving and circulating, I can keep it going to my heart and brain. The second I stop moving, it slowing begins to pool and produce the debilitating hypoperfusion. At that point, the slurred speech, confusion, and dizziness will set in.
5) I can drive a very low lying car for 15-20 minutes (on a good day). We had to buy a small car just so that my legs won't dangle at all...which speeds up the pooling. I've enjoyed driving myself more than almost anything else! This has been so freeing.
6) I've developed an unusual amount of food allergies and intolerances over the last 3 years. I was given a very 'scientific' reason for this phenomenon, that I do not quite understand. It has made eating quite a challenge, and I'm probably not very much fun to invite over for a dinner party! :)
7) I carry a small portable foot stool with me everywhere I go. I still cannot sit with my legs down, so I bring along a stool to put my legs up in public. I must admit it's very difficult for me to ignore the istimga that goes along with propping up my feet in public. I've had a few comments along the way, and I'm still learning to take them in stride.
8) I got a special type of pacemaker 2 years ago that not only paces my heart, but has a blood pressure sensor to help prevent passing out from sudden changes in blood pressure. However, because the second feature kept going off all the time, and was very uncomfortable and painful, I had the second feature turned off. Now, my pacemaker is used just for pacing my heart.
9) I have a 'frozen shoulder' that I will never be able to raise again without surgery. After my pacemaker surgery, my already 'bum' shoulder became very stiff with increased scar tissue. After years of being bedridden, I didn't find many occasions to raise my arms much. As a result, the shoulder became frozen. After months of physical therapy, the doctor said the only way to 'unfreeze' the shoulder is by cutting the scar tissue out in surgery. (I already had a joint issue in that shoulder prior to getting sick). I cannot raise my left hand over my head, behind my back, or out to the side. Surgery for me is out of the question.
10) Sugar is my enemy. About 2 years ago, every time I ate white sugar, my heart rate would go crazy and then into an irregular arrhythmia. This was an unwanted side effect especially while being bedridden. I can eat a very little here and there before it triggers the heart. The key is knowing how much before it begins. Like any warm-blooded female, no sugar is NOT an option!
11) I developed a condition called: Gastroparesis. This means that I cannot digest my food well, and after a 6 hour test, I still had more than 75% of my meal undigested in my stomach. That has produced a lot of unwanted symptoms and digestive issues, as you can imagine. This does seem to come and go for me. I can be doing really well, then out of the blue not be able to eat well for weeks on end. This has been frustrating to deal with! I think if I had lost some weight because of it, I would have accepted it a little easier. :)
12) A good day for me today is what a really bad day would have been for me 4 years ago! I often have 'great days' now. But I realized that my new great days are probably not the same definition that most people would categorize a good day. I haven't had a day go by that I didn't have a major limitation in normal actives in 4 years. I have to watch my heart rate and blood pressures very closely with cooking, showering, walking, exercising, and driving. I can never bend over, stand up quickly, or lie flat. My legs must remain elevated no matter what my activity may be that day. I have to guzzle fluids all day, watch my diet carefully, and not be in the heat. Even with all these precautions, I will still have to deal with head rushes, dizziness, shortness of breath, chest pain, facial flushing, digestive issues and more on any given day. But this is still what I would call a 'good day'!
Wednesday, April 15, 2015
Marriage in the World of the Chronically Ill!
PART 1: (I'm beginning a small series on Marriage in the World of the Chronically Ill)
One thing I've been asked over and over during my journey is how has my marriage been able to continue to thrive through all we've been through. It's not a cut and dry answer........but I will say my marriage was and still is a priority. No two marriages are the same. I would assume the dynamics prior to illness, would greatly effect the post illness marriage. However, having an earth shattering diagnosis, illness, changes in family dynamics, extreme physical and mental stress, disappointment, and so much more can rock any marriage into the seas of turmoil. I'm only sharing from my point of view and the steps we took TOGETHER to keep our marriage rock solid during immense life changes.
Hopefully my story can help someone else in a similar situation whether their marriage is forever changed by chronic illness or not.
As you have followed in my writings, my precious husband and I were inseparable prior to my illness. We were two peas in a pod, made for each other, soul-mates, and deeply in love. I'm pretty sure that has played a big part in our success. However, our world got shaken and turned upside down (and that is putting it mildly). We were faced with the devastating reality that our 'one day'---'our dreams'---'our future'---and 'our plans' would be nothing as we had imagined them. They all went up in a puff of smoke. I became sick. I WAS sick. I was no longer the same person, and in turn my husband was also not the same. Our lives were changed DRAMATICALLY.
To add insult to injury, I was now not only a physical dependent, but my previous responsibilities had to fall to someone else...and mostly to my mate. The immense pressure, new responsibilities, fear, overwhelming work load, double duty, caregiving, and uncertainty also took a heavy burden on my husband. We now had 2 completely new people in this marriage. The first was extremely sick, weak, frustrated, scared, and completely disabled. The second was overwhelmed, over worked, saddened, and carrying the weight of the world. "Hello: Mrs. Sickly let me introduce you to Mr. exhausted!"
This was stress on overdrive. Stress can devastate and destroy even a good marriage. We had both lost so much, but we were NOT going to lose our marriage or friendship. We didn't want to just survive together...we wanted to THRIVE! The work ahead was deliberate. It didn't just happen, we chose to keep 'us' strong and keep our marriage in the picture. It could have been easy to just focus on getting Melanie better hoping the rest would fall in place...and some days that's what we had to do. But our 'love for the ages' was going to stay a priority, even when our world was crashing down around us.
1) 'WE' are enough
After the dust settled, the disappointment, frustration, fear, and exhaustion set in for us both. I remember how great the burden of disappointment was for David. This was one of the toughest things we had to work through. As a 'former' planner, we had our whole lives and future mapped out. Our new life was not only unappealing but could never fit into our perfect little box. It took us both a long time to move past this aspect. One day I lifted my head slightly off of my pillow, so sick it was about all I could do, and I said: "We may not have Fiji, but we have a love for the ages, and that is enough for me." It was at that moment, we began to put what we thought life would be like on the back burner and be excited about what we did have.......we had each other and that was enough!
I'm not saying that magically all our disappointment faded into the night. It didn't, and it hasn't. But we would come up with our own new future, together. To the previous Melanie and David, the new prospect of our future wouldn't look very appealing at first. We'd have to wade through the muck of disappointment before we could find the prize at the end. I could elaborate quite a bit on this topic, but I'll save it for another post. Our first step in keeping our marriage strong was accepting the new 'future' and learning that 'WE' are enough.
2) Changing the Conversation
Have you ever had the horrible, unrelenting stomach flu? I'm talking about the can't keep anything down, can't get out of bed, can't even talk kind of stomach bug. Can you picture those 1-3 days or absolute anguish? Let me guess, you probably didn't make any life decisions, carry on riveting conversation, or show up anywhere on your A game! For 2.5 years that was my life most days. I was a real treat to talk to....yeah, no! I hurt, I ached, I was very sick, I couldn't get out of bed.....that was my reality. I didn't have very much to say. (totally not like me, by the way) I wanted someone to know I was in pain, how much I was hurting, and how much I was 'sucking' up all the time. There wasn't much more for me to say. I woke up miserable, was confined to bed, and finished out the evening in bed. The only thing to talk about was to what degree did I suffer today?
After a few months, this took a tole on our alone time. We needed to find a way to communicate and be together that didn't revolve around me being sick. That was much harder than it seems. Every time we had an opportunity to have a date night, one on one conversation, or just hanging it out, it always had to be in my bed. I couldn't leave, eat out, or do anything. We had to reinvent ourselves as a couple.
Changing the conversation.......easier said than done. It wouldn't be fair for me not to be able to share how I was feeling or what I had done today, because it was my sole existence. I needed his audience, too. However, it wasn't fair for everyday and every conversation to remind him that his wife was 'sick'. This was a tough process. Because while he needed to shut it out for a day or 2, I was still stuck living it. My pain and agony didn't cease because he needed his wife to be his friend again. We spent months talking with a grief counselor, and this was one of the challenges we addressed. She helped us find a great balance between the two. David had to learn to 'hear and listen' to what his best friend had to deal with everyday. He really worked hard at this!!! He had to bring compassion, empathy, and most importantly, a desire to listen. On the other hand, I had to make intentional time to find things to talk about that had nothing to do with illness. This was also difficult for me at first. I remember flipping through the channels one day to find some show to chat about. Slowly, the two of us equally met a very important need of the other. Now, it's amazingly easy for us. We are both very calculated in our attempts to meet the needs of conversation.
3. Intimacy
Let me keep this small entry PG! This is a wonderful topic that I would love to write more about, and frankly, I feel quite comfortable sharing, but will be brief for today since my teenagers may or may not stumble on my blog. Like any good marriage, physical intimacy is a must and must be a priority, even in the face of illness. Yes, I said that..... 'shock and awe'. One of the most important things my husband and I have done during my illness journey is keep the candle burning. I won't say there were not weeks when my husband might have been afraid to touch me or the doctors told us to refrain for medical purposes, but that's where creativity had to come into play. Would love to tip my playbook here, but I can feel my husband blushing from the other room! Creativity with chronic illness is a big key!***
When I became ill, my husband's needs didn't magically disappeared. And now that I was sick, any physical activity was a challenge. Bringing this together, was the trick. I was very much aware of his needs, and honestly, nothing helps take your mind off of your own predicament like trying to meet the needs of others (as you are able). I've told many people who are sick that if you try, even in a small effort, to help those around you, you will find your outlook on life can dramatically be altered. This same principal can be applied to physical intimacy in marriage and chronic illness. Becoming selfless isn't a popular notion these days, but one that needs to be embraced...especially in this area. Chronic illness and great sex CAN coexist.
Best advice I could give someone in the similar situation is....make it a priority, make time, do as much as possible, any effort is an effort, be extra creative, talk about it openly with your spouse, try--try--again, keep trying, and did I mention....KEEP TRYING! Gosh, I could write a whole book here on this one topic! Hmmmm, maybe I just might!
***This is the end of part 1. I'll be writing more on this topic over the next few months****
One thing I've been asked over and over during my journey is how has my marriage been able to continue to thrive through all we've been through. It's not a cut and dry answer........but I will say my marriage was and still is a priority. No two marriages are the same. I would assume the dynamics prior to illness, would greatly effect the post illness marriage. However, having an earth shattering diagnosis, illness, changes in family dynamics, extreme physical and mental stress, disappointment, and so much more can rock any marriage into the seas of turmoil. I'm only sharing from my point of view and the steps we took TOGETHER to keep our marriage rock solid during immense life changes.
Hopefully my story can help someone else in a similar situation whether their marriage is forever changed by chronic illness or not.
As you have followed in my writings, my precious husband and I were inseparable prior to my illness. We were two peas in a pod, made for each other, soul-mates, and deeply in love. I'm pretty sure that has played a big part in our success. However, our world got shaken and turned upside down (and that is putting it mildly). We were faced with the devastating reality that our 'one day'---'our dreams'---'our future'---and 'our plans' would be nothing as we had imagined them. They all went up in a puff of smoke. I became sick. I WAS sick. I was no longer the same person, and in turn my husband was also not the same. Our lives were changed DRAMATICALLY.
To add insult to injury, I was now not only a physical dependent, but my previous responsibilities had to fall to someone else...and mostly to my mate. The immense pressure, new responsibilities, fear, overwhelming work load, double duty, caregiving, and uncertainty also took a heavy burden on my husband. We now had 2 completely new people in this marriage. The first was extremely sick, weak, frustrated, scared, and completely disabled. The second was overwhelmed, over worked, saddened, and carrying the weight of the world. "Hello: Mrs. Sickly let me introduce you to Mr. exhausted!"
This was stress on overdrive. Stress can devastate and destroy even a good marriage. We had both lost so much, but we were NOT going to lose our marriage or friendship. We didn't want to just survive together...we wanted to THRIVE! The work ahead was deliberate. It didn't just happen, we chose to keep 'us' strong and keep our marriage in the picture. It could have been easy to just focus on getting Melanie better hoping the rest would fall in place...and some days that's what we had to do. But our 'love for the ages' was going to stay a priority, even when our world was crashing down around us.
1) 'WE' are enough
After the dust settled, the disappointment, frustration, fear, and exhaustion set in for us both. I remember how great the burden of disappointment was for David. This was one of the toughest things we had to work through. As a 'former' planner, we had our whole lives and future mapped out. Our new life was not only unappealing but could never fit into our perfect little box. It took us both a long time to move past this aspect. One day I lifted my head slightly off of my pillow, so sick it was about all I could do, and I said: "We may not have Fiji, but we have a love for the ages, and that is enough for me." It was at that moment, we began to put what we thought life would be like on the back burner and be excited about what we did have.......we had each other and that was enough!
I'm not saying that magically all our disappointment faded into the night. It didn't, and it hasn't. But we would come up with our own new future, together. To the previous Melanie and David, the new prospect of our future wouldn't look very appealing at first. We'd have to wade through the muck of disappointment before we could find the prize at the end. I could elaborate quite a bit on this topic, but I'll save it for another post. Our first step in keeping our marriage strong was accepting the new 'future' and learning that 'WE' are enough.
2) Changing the Conversation
Have you ever had the horrible, unrelenting stomach flu? I'm talking about the can't keep anything down, can't get out of bed, can't even talk kind of stomach bug. Can you picture those 1-3 days or absolute anguish? Let me guess, you probably didn't make any life decisions, carry on riveting conversation, or show up anywhere on your A game! For 2.5 years that was my life most days. I was a real treat to talk to....yeah, no! I hurt, I ached, I was very sick, I couldn't get out of bed.....that was my reality. I didn't have very much to say. (totally not like me, by the way) I wanted someone to know I was in pain, how much I was hurting, and how much I was 'sucking' up all the time. There wasn't much more for me to say. I woke up miserable, was confined to bed, and finished out the evening in bed. The only thing to talk about was to what degree did I suffer today?
After a few months, this took a tole on our alone time. We needed to find a way to communicate and be together that didn't revolve around me being sick. That was much harder than it seems. Every time we had an opportunity to have a date night, one on one conversation, or just hanging it out, it always had to be in my bed. I couldn't leave, eat out, or do anything. We had to reinvent ourselves as a couple.
Changing the conversation.......easier said than done. It wouldn't be fair for me not to be able to share how I was feeling or what I had done today, because it was my sole existence. I needed his audience, too. However, it wasn't fair for everyday and every conversation to remind him that his wife was 'sick'. This was a tough process. Because while he needed to shut it out for a day or 2, I was still stuck living it. My pain and agony didn't cease because he needed his wife to be his friend again. We spent months talking with a grief counselor, and this was one of the challenges we addressed. She helped us find a great balance between the two. David had to learn to 'hear and listen' to what his best friend had to deal with everyday. He really worked hard at this!!! He had to bring compassion, empathy, and most importantly, a desire to listen. On the other hand, I had to make intentional time to find things to talk about that had nothing to do with illness. This was also difficult for me at first. I remember flipping through the channels one day to find some show to chat about. Slowly, the two of us equally met a very important need of the other. Now, it's amazingly easy for us. We are both very calculated in our attempts to meet the needs of conversation.
3. Intimacy
Let me keep this small entry PG! This is a wonderful topic that I would love to write more about, and frankly, I feel quite comfortable sharing, but will be brief for today since my teenagers may or may not stumble on my blog. Like any good marriage, physical intimacy is a must and must be a priority, even in the face of illness. Yes, I said that..... 'shock and awe'. One of the most important things my husband and I have done during my illness journey is keep the candle burning. I won't say there were not weeks when my husband might have been afraid to touch me or the doctors told us to refrain for medical purposes, but that's where creativity had to come into play. Would love to tip my playbook here, but I can feel my husband blushing from the other room! Creativity with chronic illness is a big key!***
When I became ill, my husband's needs didn't magically disappeared. And now that I was sick, any physical activity was a challenge. Bringing this together, was the trick. I was very much aware of his needs, and honestly, nothing helps take your mind off of your own predicament like trying to meet the needs of others (as you are able). I've told many people who are sick that if you try, even in a small effort, to help those around you, you will find your outlook on life can dramatically be altered. This same principal can be applied to physical intimacy in marriage and chronic illness. Becoming selfless isn't a popular notion these days, but one that needs to be embraced...especially in this area. Chronic illness and great sex CAN coexist.
Best advice I could give someone in the similar situation is....make it a priority, make time, do as much as possible, any effort is an effort, be extra creative, talk about it openly with your spouse, try--try--again, keep trying, and did I mention....KEEP TRYING! Gosh, I could write a whole book here on this one topic! Hmmmm, maybe I just might!
***This is the end of part 1. I'll be writing more on this topic over the next few months****
Thursday, March 26, 2015
Haunting Memories!
For those who suffer from some sort of debilitating chronic illness, the memories of yesteryear can be haunting. The new life may have brought a plethora of limitations that make the old life seem like a candle in the wind. Remembering, longing, and urning for what was lost can weigh heavily. After all, it is a loss. It might not be a tangible loss or a human loss, but it is a loss.
I've had to deal with this in several different levels over the past 4 years. Before I became sick (4 years ago this month, actually) I had a very active, full, exciting life. I exercised 6 days a week, played tennis several times a week, carpooled the kids, cooked elaborate dinners, volunteered, took care of 3 busy children, spent lots of time with my husband, designed and sewed my daughter's clothing, traveled, active in my church, kept the house, and so many other fun activities and responsibilities.
I became very sick, very quickly. My sense of loss was not immediately devastating because I was too sick to care or sometimes even notice. I was busy fighting and 'being sick'. When you cannot even lift your own head off of the pillow, you really aren't focused on the fact that you can no longer cook a meal. But when the dust settled, the great loss did set in! And when it set in, it was devastating. I remember feeling like the whole world around me had caved in, and I was left alone to try to come to terms with all that I had lost.
Learning to deal with the haunting memories of what life used to be has and will continue to be difficult. I'm learning more tactics along the way. Here are a few things I've tried to practice along the way, and maybe can provide others who suffer with new limitations or disabilities muddle through the storm.
1) Cry, grieve, and let yourself be sad.......but don't stay there! I remember a specific day when I realized all that I could not do. I couldn't even sit in a chair, for goodness sakes! I laid on the bed and just cried like a baby. It was so good for my soul to let myself be upset, because I had guarded that part of myself. After all, I've lost so much. But after a few days of coming to grips with all that would never be again, I felt like I could move on!
2) Focus on the new memories and the new way of life. I've talked about how important this is before. My new way of life is so different than the former life. My focus has shifted, priorities rearranged, and my desires are renewed. Before I could grab a racket and head out for a quick game of tennis to pass the time. Now, I must be more creative, but keeping myself focused on what I can do...instead of what I no longer can do....will keep my head in the game. So, what will I do today? I decided to homeschool our youngest child over a year ago. This was something I could do, and it shifted my focus off of the day filled with many limitations.
3) Set new goals. I don't know exactly how much function I will regain completely. So, I set very small and attainable goals to work towards. Sometimes I've had to go back and readjust them. I had hoped to be walking 2 miles a day, but that's not in the cards for me (at least not now). So, my new goal was to walk the 1 mile 4 days a week, instead of 3 days a week. When that becomes easier, I can reevaluate. I'm not going to be the same woman I was 4 years ago, but any little gain can bring about a renewed strength.
4) Build up those healthy walls and boundaries. Nothing can be more devastating to a mother than the thought of disappointing her family. This makes the loss of abilities truly a nightmare. This has been my personal biggest obstacle for tackling the haunting memories! So, I put into a plan of action the crafty art of building walls and boundaries to protect my emotions, keep guilt at bay, and leave disappointment in the dust. That doesn't sound good, but it is! I KNOW what I can and cannot do anymore. The guilt, pressure, expectations, and demands have to take a backseat. I would continuously beat myself up if I didn't protect myself. I have significant physical limitations. I'm no longer the volunteer mom, the carpool queen, or the party guru! I cannot live in the past. How do I do this? I am prepared mentally. I do not put myself in these positions anymore. I cannot be the mom who comes to the rescue for the class bake sale. My family, kids, husband, and myself know that we must put boundaries, and it has made all the difference. There is not constant disappointment on all our parts. We know I cannot....and that has made life more bearable. It was so difficult waiting and watching and planning....just to see me too sick to do, be, go, become. Of course, not everyone can appreciate your position or understand your illness, but this is for you! Prepare others, let them know your limitations beforehand, have a wing-man, and leave the expectations at the door.
5) Guilt no more! Along with the memories of who you were.....comes that spoonful of guilt for not being who you were. I think moms express this the most. It goes along with number 4. I wrestle with this one often , as a wife and as a mother, even on my best days. Everyone remembers the 'old' you, too. It's also their loss. For me, I've lost so much of who I was, that the guilt can be overwhelming. I've learned to talk about it openly. I found sometimes, the guilt is something I've harnessed myself. Just like grieving, you cannot live there. The emotion isn't going to go away, but you don't have to wallow in it. Shift that focus onto someone else....I have found it really hard to hold onto the guilt when I'm focused on making someone else's life happier.
6) Remember with joy! I'm choosing to be thankful for the years, the memories, and life I once had. I was blessed, and I will remember all of those years with much joy. As I share the stories, a tear or two might roll down my cheek, but with gratefulness I will remember them!
7) Pray (or do whatever you do to feel connected with your maker). I know these feelings are normal. There is a great longing to be who I was! One of the easiest things for me to do is to just stop and pray. I sometimes cannot handle the bundle of emotions that goes along with the memories. After all, I did call the piece 'Haunting Memories' for a reason. Just this week, I threw up my hands and simply said: "God, please give the strength to move past this, and to remember what I'm living for today, and not living in the past." Maybe just sing a song to turn mourning into dancing....just maybe not "Memories" by Barbara Streisand.
"Weeping may last for the night, but joy comes in the morning"
I've had to deal with this in several different levels over the past 4 years. Before I became sick (4 years ago this month, actually) I had a very active, full, exciting life. I exercised 6 days a week, played tennis several times a week, carpooled the kids, cooked elaborate dinners, volunteered, took care of 3 busy children, spent lots of time with my husband, designed and sewed my daughter's clothing, traveled, active in my church, kept the house, and so many other fun activities and responsibilities.
I became very sick, very quickly. My sense of loss was not immediately devastating because I was too sick to care or sometimes even notice. I was busy fighting and 'being sick'. When you cannot even lift your own head off of the pillow, you really aren't focused on the fact that you can no longer cook a meal. But when the dust settled, the great loss did set in! And when it set in, it was devastating. I remember feeling like the whole world around me had caved in, and I was left alone to try to come to terms with all that I had lost.
Learning to deal with the haunting memories of what life used to be has and will continue to be difficult. I'm learning more tactics along the way. Here are a few things I've tried to practice along the way, and maybe can provide others who suffer with new limitations or disabilities muddle through the storm.
1) Cry, grieve, and let yourself be sad.......but don't stay there! I remember a specific day when I realized all that I could not do. I couldn't even sit in a chair, for goodness sakes! I laid on the bed and just cried like a baby. It was so good for my soul to let myself be upset, because I had guarded that part of myself. After all, I've lost so much. But after a few days of coming to grips with all that would never be again, I felt like I could move on!
2) Focus on the new memories and the new way of life. I've talked about how important this is before. My new way of life is so different than the former life. My focus has shifted, priorities rearranged, and my desires are renewed. Before I could grab a racket and head out for a quick game of tennis to pass the time. Now, I must be more creative, but keeping myself focused on what I can do...instead of what I no longer can do....will keep my head in the game. So, what will I do today? I decided to homeschool our youngest child over a year ago. This was something I could do, and it shifted my focus off of the day filled with many limitations.
3) Set new goals. I don't know exactly how much function I will regain completely. So, I set very small and attainable goals to work towards. Sometimes I've had to go back and readjust them. I had hoped to be walking 2 miles a day, but that's not in the cards for me (at least not now). So, my new goal was to walk the 1 mile 4 days a week, instead of 3 days a week. When that becomes easier, I can reevaluate. I'm not going to be the same woman I was 4 years ago, but any little gain can bring about a renewed strength.
4) Build up those healthy walls and boundaries. Nothing can be more devastating to a mother than the thought of disappointing her family. This makes the loss of abilities truly a nightmare. This has been my personal biggest obstacle for tackling the haunting memories! So, I put into a plan of action the crafty art of building walls and boundaries to protect my emotions, keep guilt at bay, and leave disappointment in the dust. That doesn't sound good, but it is! I KNOW what I can and cannot do anymore. The guilt, pressure, expectations, and demands have to take a backseat. I would continuously beat myself up if I didn't protect myself. I have significant physical limitations. I'm no longer the volunteer mom, the carpool queen, or the party guru! I cannot live in the past. How do I do this? I am prepared mentally. I do not put myself in these positions anymore. I cannot be the mom who comes to the rescue for the class bake sale. My family, kids, husband, and myself know that we must put boundaries, and it has made all the difference. There is not constant disappointment on all our parts. We know I cannot....and that has made life more bearable. It was so difficult waiting and watching and planning....just to see me too sick to do, be, go, become. Of course, not everyone can appreciate your position or understand your illness, but this is for you! Prepare others, let them know your limitations beforehand, have a wing-man, and leave the expectations at the door.
5) Guilt no more! Along with the memories of who you were.....comes that spoonful of guilt for not being who you were. I think moms express this the most. It goes along with number 4. I wrestle with this one often , as a wife and as a mother, even on my best days. Everyone remembers the 'old' you, too. It's also their loss. For me, I've lost so much of who I was, that the guilt can be overwhelming. I've learned to talk about it openly. I found sometimes, the guilt is something I've harnessed myself. Just like grieving, you cannot live there. The emotion isn't going to go away, but you don't have to wallow in it. Shift that focus onto someone else....I have found it really hard to hold onto the guilt when I'm focused on making someone else's life happier.
6) Remember with joy! I'm choosing to be thankful for the years, the memories, and life I once had. I was blessed, and I will remember all of those years with much joy. As I share the stories, a tear or two might roll down my cheek, but with gratefulness I will remember them!
7) Pray (or do whatever you do to feel connected with your maker). I know these feelings are normal. There is a great longing to be who I was! One of the easiest things for me to do is to just stop and pray. I sometimes cannot handle the bundle of emotions that goes along with the memories. After all, I did call the piece 'Haunting Memories' for a reason. Just this week, I threw up my hands and simply said: "God, please give the strength to move past this, and to remember what I'm living for today, and not living in the past." Maybe just sing a song to turn mourning into dancing....just maybe not "Memories" by Barbara Streisand.
"Weeping may last for the night, but joy comes in the morning"
Monday, March 23, 2015
ANNIVERSARY: Sorrow into Dancing!
March 2011 was a month I will never forget for the rest of my life. A seemingly normal young mother of 3, ventured south on a vacation just as she always had each spring break. Melanie played tennis several times a week, exercised 6-7 days every week, and enjoyed being active. She sewed and designed many of her daughter's outfits. Cooking was one of her favorite hobbies. She still had a toddler at home, but the two older boys were now in school after being homeschooled, and she was awaiting kindergarten with gleeful anticipation for her first year alone since her son's birth in 1999. She was active in her church, friendships, and with her family. Her husband and herself were inseparable and were loving each other and life truly to the fullest. It was going to be a year to remember!
THEN....................................................................
If you have read my blog at all, you know the 'year to remember' ended up being a year from hell....that would be followed by 3 more years even more intense, more sinister, and more devastating. Over 2.5 years bedridden, in a wheelchair, and unable to even stand for more than 90 seconds at one time....I'm looking back at my 4 year 'sick' anniversary. I could have never imagined that this scenario would become my life. I've come close to the grave more than once, gotten a pacemaker in my 30's, been to many hospitals all over the country, been sick every day non-stop for years, knocked out teeth, passed out more times than I could even count, received revolutionary medical treatments, told to get my affairs in order, baffled doctors even at the Mayo Clinic, been so sick for months I could barely lift my head off the bed, received in-home IV infusions, been too sick to even walk myself to the bathroom or brush my own teeth, unable to leave the house for 6 or more months at a time, missed years of my children's lives, cried for days in unrelenting pain, and so many, many more! (and that's just the physical anguish)
BUT............................................................................
All of that is what I've had to endure and MADE IT THROUGH! I love that saying that I see from time to time: "My track record of getting through bad days is still 100%". However, this anniversary is going to be much more bitter-sweet. You see, I'm also having a NEW anniversary this year. While this week marks the 4 year point of this painful journey, it also marks the ONE YEAR ANNIVERSARY OF NOT HAVING PASSED OUT!!!!!!!!! (For those of you who have not followed my blog, I could only stand for 90 seconds to maybe 3-5 minutes before I would lose consciousness EVERY TIME! Because my autonomic nervous system has failed, it cannot keep the blood to my heart and brain long enough for me to remain postural) Without a rhyme or reason, the last month of March was the VERY last time I lost consciousness..........(excuse me while I do a little dance at this point). Of course, I do not stand in one place very long, don't keep my legs down much, or try to run around. I'm sure I could trigger the response, but I'm able to LIVE within these parameters much more easily.
I can cook, walk, drive a little, exercise more, take care of myself, FINALLY care for my family, do some shopping, take myself some places, and so much more. Yes, I have crazy limitations that would devastate most people, but they are nothing compared to the life I lived just 6 months ago. I still have immense discomfort, pain, gastroparesis, many dizzy days, severe hypoperfusion, cardiac conditions, and the list goes on! But I am WALKING....I am celebrating....I am living!!!! Gosh, I'm so blessed!
SO....................................................................................
While I did pause for a moment to look back at the 'sorrow' of my 4 year anniversary, I can't help but to 'dance' with my new 1 year anniversary. Much has been lost, but also much has been given. I'm not the same person from 4 years ago, but I am blessed, thankful, grateful, and joyful. I'm in complete awe of where this journey has taken me, and that I continue to get back up each and every time (not of my own strength).
I wish that you might also find a way to turn your sorrow into dancing today! We all have different life experiences that were meant to break us......but in turn, made us stronger! Let's all DANCE it out, today!
THEN....................................................................
If you have read my blog at all, you know the 'year to remember' ended up being a year from hell....that would be followed by 3 more years even more intense, more sinister, and more devastating. Over 2.5 years bedridden, in a wheelchair, and unable to even stand for more than 90 seconds at one time....I'm looking back at my 4 year 'sick' anniversary. I could have never imagined that this scenario would become my life. I've come close to the grave more than once, gotten a pacemaker in my 30's, been to many hospitals all over the country, been sick every day non-stop for years, knocked out teeth, passed out more times than I could even count, received revolutionary medical treatments, told to get my affairs in order, baffled doctors even at the Mayo Clinic, been so sick for months I could barely lift my head off the bed, received in-home IV infusions, been too sick to even walk myself to the bathroom or brush my own teeth, unable to leave the house for 6 or more months at a time, missed years of my children's lives, cried for days in unrelenting pain, and so many, many more! (and that's just the physical anguish)
BUT............................................................................
All of that is what I've had to endure and MADE IT THROUGH! I love that saying that I see from time to time: "My track record of getting through bad days is still 100%". However, this anniversary is going to be much more bitter-sweet. You see, I'm also having a NEW anniversary this year. While this week marks the 4 year point of this painful journey, it also marks the ONE YEAR ANNIVERSARY OF NOT HAVING PASSED OUT!!!!!!!!! (For those of you who have not followed my blog, I could only stand for 90 seconds to maybe 3-5 minutes before I would lose consciousness EVERY TIME! Because my autonomic nervous system has failed, it cannot keep the blood to my heart and brain long enough for me to remain postural) Without a rhyme or reason, the last month of March was the VERY last time I lost consciousness..........(excuse me while I do a little dance at this point). Of course, I do not stand in one place very long, don't keep my legs down much, or try to run around. I'm sure I could trigger the response, but I'm able to LIVE within these parameters much more easily.
I can cook, walk, drive a little, exercise more, take care of myself, FINALLY care for my family, do some shopping, take myself some places, and so much more. Yes, I have crazy limitations that would devastate most people, but they are nothing compared to the life I lived just 6 months ago. I still have immense discomfort, pain, gastroparesis, many dizzy days, severe hypoperfusion, cardiac conditions, and the list goes on! But I am WALKING....I am celebrating....I am living!!!! Gosh, I'm so blessed!
SO....................................................................................
While I did pause for a moment to look back at the 'sorrow' of my 4 year anniversary, I can't help but to 'dance' with my new 1 year anniversary. Much has been lost, but also much has been given. I'm not the same person from 4 years ago, but I am blessed, thankful, grateful, and joyful. I'm in complete awe of where this journey has taken me, and that I continue to get back up each and every time (not of my own strength).
I wish that you might also find a way to turn your sorrow into dancing today! We all have different life experiences that were meant to break us......but in turn, made us stronger! Let's all DANCE it out, today!
Monday, March 9, 2015
Back in the game!
Well, the holidays and most of the winter are now behind us! I'm still playing catch up from the busy season and my recent trip. I thank everyone who reached out during my little 'hiatus' from the blog. I appreciated the love, notes, emails, and cards. I will slowly be getting back to writing more about living life with chronic illness and include an occasional health update from time to time.
This winter was certainly a roller coaster for me and my health. I had many wonderful days, filled with much joy and happiness. I enjoyed the holidays and all that comes with them. I also had many difficult days. While I'm 10 times better than I was a year ago, it hasn't made the rough days any easier. I keep telling myself that the really bad days just make the good days that much sweeter. It's very true. But the body sure does grow weary of the pain, the limitations, the sick feelings, the emotions, and the let downs. I pick myself up each and every day, even when the days seems dark! I'm so grateful to have my family helping me through this difficult journey.
As many of you may know, I spent almost an entire month in southern California during the month of February with my daughter. We took this trip for medical reasons. We wanted to try to jump start my body back into the rhythm of last August when I was feeling amazing! We also know the snow and bitter cold can make life more challenging here in Indiana when you are chronically ill. We wanted to experiment with climate changes, as well. Because I cannot do much, physical activity is limited greatly in the cold months. We also knew this would be a great time to renew the spirit, mind, and body! I had slowly began to lose so much progress, we had to do something drastic to prevent a return to the wheelchair. So, we set out on the drive across the country!
I am not a good traveler due to multiple physical limitations. However, despite having to ride 4 days with my legs on the dashboard, I did amazingly well. I'm still unable to sit normally with my legs down for more than 10-20 minutes at a time. Ellie and I spent the next several weeks right on the beach. We homeschooled, biked, walked, visited family close by, played, talked, read, and reconnected. It was a beautiful time for us both. However, the trip did not yield the desired effects. I had a crash while there, but it didn't last as long as they typically do. The time with my daughter was priceless. My men back home did wonderfully without us, and we were delighted to be reunited. While the results were frustrating, we felt like we did learn a little more and won't call it an entire waste! Ellie and I are already planning another trip for next February...maybe Florida?!
I've grown more frustrated in the last few months dealing with such an unknown and unpredictable disease. Knowing that I did have a few months of feeling great, it has only made me more anxious to find out the cause of the decline vs the incline. The doctors still continue to not have any answers and continue to tell me its all part of the normal course. I've grown more restless, maybe to my own detriment, to find a way to get better again. The bad days are increasing in frequency, and my resolve has multiplied.
I'm learning more and more about how to live with chronic illness----despite my consistent denial that this is going to be my life forever. Each day is brining me new opportunities to learn and grow. I'm eager to share some of these new coping and managing skills of chronic illness with you. After all, we only get one shot at this life, might as well make it amazing......even if I am going to be sick.
This winter was certainly a roller coaster for me and my health. I had many wonderful days, filled with much joy and happiness. I enjoyed the holidays and all that comes with them. I also had many difficult days. While I'm 10 times better than I was a year ago, it hasn't made the rough days any easier. I keep telling myself that the really bad days just make the good days that much sweeter. It's very true. But the body sure does grow weary of the pain, the limitations, the sick feelings, the emotions, and the let downs. I pick myself up each and every day, even when the days seems dark! I'm so grateful to have my family helping me through this difficult journey.
As many of you may know, I spent almost an entire month in southern California during the month of February with my daughter. We took this trip for medical reasons. We wanted to try to jump start my body back into the rhythm of last August when I was feeling amazing! We also know the snow and bitter cold can make life more challenging here in Indiana when you are chronically ill. We wanted to experiment with climate changes, as well. Because I cannot do much, physical activity is limited greatly in the cold months. We also knew this would be a great time to renew the spirit, mind, and body! I had slowly began to lose so much progress, we had to do something drastic to prevent a return to the wheelchair. So, we set out on the drive across the country!
I am not a good traveler due to multiple physical limitations. However, despite having to ride 4 days with my legs on the dashboard, I did amazingly well. I'm still unable to sit normally with my legs down for more than 10-20 minutes at a time. Ellie and I spent the next several weeks right on the beach. We homeschooled, biked, walked, visited family close by, played, talked, read, and reconnected. It was a beautiful time for us both. However, the trip did not yield the desired effects. I had a crash while there, but it didn't last as long as they typically do. The time with my daughter was priceless. My men back home did wonderfully without us, and we were delighted to be reunited. While the results were frustrating, we felt like we did learn a little more and won't call it an entire waste! Ellie and I are already planning another trip for next February...maybe Florida?!
I've grown more frustrated in the last few months dealing with such an unknown and unpredictable disease. Knowing that I did have a few months of feeling great, it has only made me more anxious to find out the cause of the decline vs the incline. The doctors still continue to not have any answers and continue to tell me its all part of the normal course. I've grown more restless, maybe to my own detriment, to find a way to get better again. The bad days are increasing in frequency, and my resolve has multiplied.
I'm learning more and more about how to live with chronic illness----despite my consistent denial that this is going to be my life forever. Each day is brining me new opportunities to learn and grow. I'm eager to share some of these new coping and managing skills of chronic illness with you. After all, we only get one shot at this life, might as well make it amazing......even if I am going to be sick.
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