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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.
Tuesday, December 2, 2014
Taking a blog break!
First, let me start by saying how much I appreciate all the love, support, letters, prayers, cards, and emails I have received and continue to receive. I love each and every note and continue to covet each prayer! This year has been the biggest roller coaster of my entire life. After failing to thrive and being taken to hospitals in January fighting to live and then made an unexpected recovery, this has been a year of thrills and chills! I continue to battle 'my demons' physically. The new topsy turvy way of life has been a challenge to me physically, but even more mentally. I've had a tougher time understanding the good turned to bad again, then I ever did just being 'bad' all the time. To say the challenges of this year have made me feel like a constant marathon runner of emotions would be a complete understatement! I'm learning to accept, but I will be honest, this mental strain of uncertainty has been one of the biggest challenges of my entire life!
As we prepare for the holidays and David's surgery coming up, I've found I am spending less and less time on the computer. I'm very involved in homeschooling our youngest for her last year before returning to school next fall. I still battle with terrible physical pain and illness. I'm trying to spend as much time with my boys as I can, and I'm desperately trying to make memories while trying to catch up for lost time. (That will be a whole other blog in the spring about not having to be a supermom after being in the bed for years on end) My new found responsibilities are not a burden for me, but they are very different than they once were. I tire very easily, get worn out, and am still riddled with endless limitations. I'm working very hard (though not always successfully) to let some things go and just be in the moment. Not the easiest task for someone who had to watch from the sidelines for so very long!
After giving you a small glimpse into my strange little world, I wanted to let you know I'm taking a small hiatus from blogging for now. I have a lot to share about how to live life for those who suffer from chronic illness, how to maintain joy and sanity in the midst of 'hell on earth', and how to live gracefully despite your world being turned upside down! However, right now, I want to really focus on this family of mine. I am able to do more, and I want to push away from the computer and do it BECAUSE I FINALLY CAN! On the days I'm quite ill, I don't want to focus on pain and the suffering and will try to keep my head above water as I deal with the scary setbacks. I love this outlet and have enjoyed all the wonderful support. I will be back in a few months after I spend some quality time loving on these wonderful souls around me. However, if something major arises, I will be sure to share in the meantime. I'm hoping when I say 'major' I mean, like I'm running around playing tennis! haha
So, wishing you all a very merry Christmas. May all your dreams be bright, but if you find yourself, like me, living a life you didn't plan or expect, may you remember JOY IS A CHOICE!
As we prepare for the holidays and David's surgery coming up, I've found I am spending less and less time on the computer. I'm very involved in homeschooling our youngest for her last year before returning to school next fall. I still battle with terrible physical pain and illness. I'm trying to spend as much time with my boys as I can, and I'm desperately trying to make memories while trying to catch up for lost time. (That will be a whole other blog in the spring about not having to be a supermom after being in the bed for years on end) My new found responsibilities are not a burden for me, but they are very different than they once were. I tire very easily, get worn out, and am still riddled with endless limitations. I'm working very hard (though not always successfully) to let some things go and just be in the moment. Not the easiest task for someone who had to watch from the sidelines for so very long!
After giving you a small glimpse into my strange little world, I wanted to let you know I'm taking a small hiatus from blogging for now. I have a lot to share about how to live life for those who suffer from chronic illness, how to maintain joy and sanity in the midst of 'hell on earth', and how to live gracefully despite your world being turned upside down! However, right now, I want to really focus on this family of mine. I am able to do more, and I want to push away from the computer and do it BECAUSE I FINALLY CAN! On the days I'm quite ill, I don't want to focus on pain and the suffering and will try to keep my head above water as I deal with the scary setbacks. I love this outlet and have enjoyed all the wonderful support. I will be back in a few months after I spend some quality time loving on these wonderful souls around me. However, if something major arises, I will be sure to share in the meantime. I'm hoping when I say 'major' I mean, like I'm running around playing tennis! haha
So, wishing you all a very merry Christmas. May all your dreams be bright, but if you find yourself, like me, living a life you didn't plan or expect, may you remember JOY IS A CHOICE!
Wednesday, November 5, 2014
Life wasn't promised to be all rainbows and unicorns!
Things certainly seemed to be looking very, very positive around here. After months of very, very hard work, I had finally begun to reap the benefits. While I struggled a bit here and there, I was regaining lost ground, improving week by week, and having more good days for a change.
HOWEVER......that dreaded little word.....I took quite a stumble backwards in the last few weeks. When I say backwards....I mean, I lost much of the improvements in one swift movement. We are still trying to figure out what went wrong, but just as mysteriously as I became sick almost 4 long years ago, the unknown continues to haunt me. I've contacted and seen a few of my doctors (including a gut wrenching trip to the ER). The return of the pain, sick feelings, nausea, dizziness, changes in vitals, and even loss of venous constriction all returned in less than 4 days flat!
While this may help provide some vital information for my doctors in the long run, this has been beyond devastating to me, personally, and our family. David and I are very distraught over the recent setback but are trying very hard not to let this defeat or define us. There is a new fear that I never had before this setback. I have so much to lose now after regaining so many of my functions. It's beyond frustrating when the doctors still to this day do not know how and why I got so very sick so quickly.....so we do not know how to prevent it happening again.
There have been some ups and downs the last few weeks. We are not losing hope and choose not to be defeated. I can only point to the fact that just last year I was wheelchair bound and had no hope of ever driving again, and today I can still drive a very short distance now and then and cook for my family. That is what will be our focus during the return of pain, difficult days, and uncertainty.
I wanted to keep you posted on events. As I have found, this is nothing more than a roller coaster ride. Thank you for being apart and sharing in the many, many highs and lows! The lows are harder to type and share, but you cannot pray unless I share! And we so covet those prayers, the love, and the support we continue to receive. It still blows my mind how after so long, and so many years, there are many that still support our family through each low and celebrate with each high.
Tuesday, October 21, 2014
Quick update for Oct. 2014
What a sharp contrast between this October and last October. I was almost completely bed bound, home bound, and disabled. Now, I'm able to walk about a mile or so, ride my bike, drive more and more, and cook for my family. It's been an exciting adjustment and still very hard to get used to waking up each day knowing I'm able to do more!
HOWEVER.....there is always that word lurking around the corner.....I'm continuing to fight my physical 'demons'. We have not gotten a hold on the chronic dizziness. In fact, it's getting worse week by week. The doctors have a few working theories, and I have begun the medicine juggling game once again. It is unbearably frustrating to be on top of the world one day---almost unstoppable--then down for the count for the next 1-3 days. If any of you have ever suffered with vertigo, dizziness, or the feeling of being off-balance, you might understand what this is like! I'm working very hard to keep my anger and frustration in check!
I was recently diagnosed with adrenal insufficiency after several tests were run to confirm the suspicion. This was a big blow to us after such a difficult fight to improve with my dysautonomia, tachy-brady syndrome and others. However, I've begun the necessary treatment, and we will work around this accordingly. It did help explain why I get so sick, so fast, and so severely. However, there is still a missing piece to this crazy puzzle. We are working with a new doctor to help see if we cannot nail down the source of the dizziness.
Despite the frustrating setbacks, there is so much joy in the air on the wonderful days. Our family has laughed, cried, rejoiced, and celebrated a lot. Also, I'm pretty sure we have all put on a good 10 lbs in the last few months as my endless creations in the kitchen never seem to cease! There is usually something delicious lurking in the oven! The kids have adjusted quite well to the 'new/old' mom. They have even quit picking up their own stuff in great relief that they don't have to bare so much burden. We will need to work on this, I believe! haha It's been a juggling act trying to take care of my body, get rest, pace myself, ward off the self-guilt for being absent for so long, and get back into the busy game of family life. I have forgotten how hard this can be to keep your priorities straight. It's difficult to get lost in the shuffle of 'doing' that you forget you are supposed to be 'living'. From where I have been, it's easier this go round to set down the laundry and sit down with my family.
As I stumble along on this new road, I'm still in great awe of all the friends, family, new friends, and loved ones who have continued to pray for our family. We are still in much need of your prayers! In fact, some days, learning to deal with 'sick days' are much harder now than it ever was while I was very sick. I have much further to fall, and I'm working very hard on making sure my mind can handle these huge pendulum swings. But on the amazing days, I'm enjoying life to the absolute fullest!
HOWEVER.....there is always that word lurking around the corner.....I'm continuing to fight my physical 'demons'. We have not gotten a hold on the chronic dizziness. In fact, it's getting worse week by week. The doctors have a few working theories, and I have begun the medicine juggling game once again. It is unbearably frustrating to be on top of the world one day---almost unstoppable--then down for the count for the next 1-3 days. If any of you have ever suffered with vertigo, dizziness, or the feeling of being off-balance, you might understand what this is like! I'm working very hard to keep my anger and frustration in check!
I was recently diagnosed with adrenal insufficiency after several tests were run to confirm the suspicion. This was a big blow to us after such a difficult fight to improve with my dysautonomia, tachy-brady syndrome and others. However, I've begun the necessary treatment, and we will work around this accordingly. It did help explain why I get so sick, so fast, and so severely. However, there is still a missing piece to this crazy puzzle. We are working with a new doctor to help see if we cannot nail down the source of the dizziness.
Despite the frustrating setbacks, there is so much joy in the air on the wonderful days. Our family has laughed, cried, rejoiced, and celebrated a lot. Also, I'm pretty sure we have all put on a good 10 lbs in the last few months as my endless creations in the kitchen never seem to cease! There is usually something delicious lurking in the oven! The kids have adjusted quite well to the 'new/old' mom. They have even quit picking up their own stuff in great relief that they don't have to bare so much burden. We will need to work on this, I believe! haha It's been a juggling act trying to take care of my body, get rest, pace myself, ward off the self-guilt for being absent for so long, and get back into the busy game of family life. I have forgotten how hard this can be to keep your priorities straight. It's difficult to get lost in the shuffle of 'doing' that you forget you are supposed to be 'living'. From where I have been, it's easier this go round to set down the laundry and sit down with my family.
As I stumble along on this new road, I'm still in great awe of all the friends, family, new friends, and loved ones who have continued to pray for our family. We are still in much need of your prayers! In fact, some days, learning to deal with 'sick days' are much harder now than it ever was while I was very sick. I have much further to fall, and I'm working very hard on making sure my mind can handle these huge pendulum swings. But on the amazing days, I'm enjoying life to the absolute fullest!
Monday, September 22, 2014
NEW vs OLD---compare and contrast
As I mentioned in my last post, I've made some exciting and unexpected improvements recently. The last 6 months have been a steady increase in activity and a steady decline in the 'pain and anguish' department. The last two months allowed me to cross the major hurdle of walking again. I'm far from 'symptom' free, but I have quit passing out completely!!!!!! I can walk around, cook, take long walks, and ride my bike OUTSIDE! Everything is so new and exciting. I've been sick for 3.5 years and almost completely bedridden for OVER 2 years, and now I'm walking around the store like a new woman! (I'm sure I look pretty goofy with the big ole smile on my face as I walk down the bread aisle!) I'm still struggling with some dizziness, heart issues, nausea, and venous pooling, but am learning to finally be able to compartmentalize each ailment, and not let them put me in the bed for too long.
I wanted to show a quick compare and contrast of what my life is looking like today vs 8-9 months ago! This hasn't all sunk in for me yet, so this might surprise me, as well.
Jan. 2014-Mornings:
Every morning was filled with an immediate assessment of what my day may hold. Each day was a surprise to what constellation of symptoms I might have to deal with that day. I woke up every day with a fast heart rate of at least 110-140 bpm that would continue until my pills would slow it down for me. I could get a cup of coffee and some days I could muster enough energy to put together a small breakfast for a child or two. This would usually be a 'wait and see' time. I would deal with head rushes every morning that would either be mild to severe.
Now:
While I still have a pretty restless night sleep and wake up with a fast heart rate, the head rushes are now intermittent and much more rare. I can easily make breakfast for the kids, including eggs and bacon. I may not feel amazing upon waking, but I don't expect to be sick as I once did.
Jan. 2014-Pills:
I was taking anywhere from 20-27 pills every single day, NOT including vitamins and supplements. I also was taking multiple types of injections for several years. At one point I was hooked up to an IV machine right in my home receiving infusions weekly to bi-weekly.
Now:
I've self-reduced my medicines to the bare minimum. I am now taking about 6-10 pills a day now and that does include my supplements. I'm off all the injections and infusions!
Jan. 2014-Mid-mornings:
This was my best part of the day back in Jan. This was the only time of day I could do anything. I would do a few loads of laundry on good days. That was about the extent of my activities. Taking a shower was a big chore and challenge. I would need to rest and take breaks just to get dressed, put on make-up, and heaven forbid.....fix my hair. My ability to stand was anywhere from 90 seconds to 5 minutes before I would lose consciousness. I might try to stay on the sofa for an hour or two if possible on unusually great days.
Now:
Since I homeschool my daughter, my mornings are filled with lots of books, teaching, and laundry. While this is still my favorite part of the day, I have a lot more energy. We often take a break after math class and take a bike ride around the block. On the weekends, I might do some organizing, shopping, or cooking during this time.
Jan. 2014-Afternoons:
For the last 3 years, this was my most miserable time of day. Usually by noon, I was feeling weak, sick, and dizzy. I would be in the bed the rest of the day and night. I would usually be unable to do much at all. It was a challenge on some days to even talk to anyone or even care for myself in any way. I would need help getting my meals or anything that required any effort.
Now:
I won't say this still isn't the time of day where something might go awry, but it's now just hit and miss. I can go shopping if I want, clean the house, take a bike ride, exercise, and especially COOK. I do still need to rest for 45 minutes or so (especially after a long day of homeschooling), but I am usually eager to get on my recumbent bike shortly after that. I get a second wind and get busy in the kitchen-my long lost love! I finally look forward to the afternoons! It's not all rainbows and unicorns as I still battle some ugly dizziness, but gosh, it's not nearly as bad when you know in a few days you can be up and at em again!
Jan. 2014-Evenings:
90% of the time, I would have to eat my meals alone in my bed over the last 2 years. I tried very hard to stay engaged in the family. I would still help with homework and all the things that come with having 3 busy kids. There were many nights that I was completely absent. I would be too sick to even lift my head off the pillow. My husband would have to go full blast family mode even after a long day at work. I would try very hard, but more nights than not, I was too sick to participate. We would all rejoice on the nights I could have any family time. It would usually warrant a very good Facebook post!
Now:
I finally get to serve my husband and children a wonderful dinner! This has been the MOST fun for me. I try to take an evening walk or bike ride at night. This is so exciting. If I'm not running about outside, I might whisk David off for a late night shopping run or to let me drive around a bit! After over 2 years of no shopping, I'm gonna go every chance I can get. I will spend many nights on the couch with the family instead of in the bed once I'm growing tired.
Jan. 2014-Exercise:
Up until February, I had been unable to do pretty much any exercise of any kind for 1.5 years. I tried a few things, but since I had to stay in a recumbent position (head up and legs up) at all times, it made anything impossible. That sure didn't help the waistline!
Now:
I slowly began using my recumbent bike in late February 2014 again. I've been able to go from 1-3 minutes to 22-25 minutes on the bike. I can speed walk about a mile or more on some days, ride my bike outside for 20 minutes, and slow walk from anywhere from 20 minutes to over an hour. Yep, this is the same person who passed out on a tilt table test in less than 3 minutes!
Jan. 2014-Sitting:
One of the worst things about having been so sick is the loss of my ability to sit in a chair like a normal person. This proved to be the most challenging obstacle. That meant: no restaurants, no dinner at the table, no church, no movies, no normal outings. Within 3 minutes, my legs would turn a deep red, and I would begin to feel ill and lightheaded.
Now:
I've increased my sitting time to about 20-30 minutes before I feel uncomfortable and my blood pressure drops. I still do not eat with my legs down, and I can only drive for short-short distances. However, I am still in the rehab stage of this. This is my BIGGEST wish and prayer. I hope that one day I will sit through a movie with my legs firmly planted on the floor without feeling poorly! As for now, I'm happy to be going to the movies even if it means my feet are hiked up on the seat in front of me! I've purchased a little stool to carry around with me when I need to sit down with legs elevated. This has meant I can ditch the wheelchair for sitting and trade it in for this little portable stool!
Jan. 2014-Good days vs Bad days:
Most days were bad days. A good day in Melanie's life was one where I could sit up in the bed and talk with the family. A good day was if I made it to the doctor's office without feeling too sick. A good day was maybe getting to cut my own apple for snack and preparing a sandwich for one of the kids. A good day might have been a ride in the car just to get some sunshine. A good day might have been several hours of pain free or if I could do something small that I hadn't been able to do on most days.
Now:
A good day is almost every day. No, I'm not symptom free and still haven't had a day without some sort of pain or discomfort. But it's so much more bearable. I really couldn't even put it into the correct words to explain the misery of the days of the PAST. But today, the moments of 'pain' will often fade away in the glory of all I can and will be doing. There are still series of 'dizzy' days that are making life unpredictable and difficult. They make me frustrated and a little upset, but I know there will be an end point. That was one of the things about being so sick for so long.....you know it will never, ever end.
This is just a brief little snap shot into my the huge change in my world. What a beautiful sight this has been for us all. The obstacles still exist and seem to creep up in unwanted and unexpected times, for sure......but it's so much easier to handle them knowing another 'fun' day is just waiting to be had. As the rain poured down last night on my complaining family during our quick grocery store run, I couldn't help but to rejoice and smile that I was given the privilege to RUN through the rain!!!!!!
I wanted to show a quick compare and contrast of what my life is looking like today vs 8-9 months ago! This hasn't all sunk in for me yet, so this might surprise me, as well.
COMPARE AND CONTRAST: JANUARY 2014 VS SEPTEMBER 2014
Jan. 2014-Mornings:
Every morning was filled with an immediate assessment of what my day may hold. Each day was a surprise to what constellation of symptoms I might have to deal with that day. I woke up every day with a fast heart rate of at least 110-140 bpm that would continue until my pills would slow it down for me. I could get a cup of coffee and some days I could muster enough energy to put together a small breakfast for a child or two. This would usually be a 'wait and see' time. I would deal with head rushes every morning that would either be mild to severe.
Now:
While I still have a pretty restless night sleep and wake up with a fast heart rate, the head rushes are now intermittent and much more rare. I can easily make breakfast for the kids, including eggs and bacon. I may not feel amazing upon waking, but I don't expect to be sick as I once did.
Jan. 2014-Pills:
I was taking anywhere from 20-27 pills every single day, NOT including vitamins and supplements. I also was taking multiple types of injections for several years. At one point I was hooked up to an IV machine right in my home receiving infusions weekly to bi-weekly.
Now:
I've self-reduced my medicines to the bare minimum. I am now taking about 6-10 pills a day now and that does include my supplements. I'm off all the injections and infusions!
Jan. 2014-Mid-mornings:
This was my best part of the day back in Jan. This was the only time of day I could do anything. I would do a few loads of laundry on good days. That was about the extent of my activities. Taking a shower was a big chore and challenge. I would need to rest and take breaks just to get dressed, put on make-up, and heaven forbid.....fix my hair. My ability to stand was anywhere from 90 seconds to 5 minutes before I would lose consciousness. I might try to stay on the sofa for an hour or two if possible on unusually great days.
Now:
Since I homeschool my daughter, my mornings are filled with lots of books, teaching, and laundry. While this is still my favorite part of the day, I have a lot more energy. We often take a break after math class and take a bike ride around the block. On the weekends, I might do some organizing, shopping, or cooking during this time.
Jan. 2014-Afternoons:
For the last 3 years, this was my most miserable time of day. Usually by noon, I was feeling weak, sick, and dizzy. I would be in the bed the rest of the day and night. I would usually be unable to do much at all. It was a challenge on some days to even talk to anyone or even care for myself in any way. I would need help getting my meals or anything that required any effort.
Now:
I won't say this still isn't the time of day where something might go awry, but it's now just hit and miss. I can go shopping if I want, clean the house, take a bike ride, exercise, and especially COOK. I do still need to rest for 45 minutes or so (especially after a long day of homeschooling), but I am usually eager to get on my recumbent bike shortly after that. I get a second wind and get busy in the kitchen-my long lost love! I finally look forward to the afternoons! It's not all rainbows and unicorns as I still battle some ugly dizziness, but gosh, it's not nearly as bad when you know in a few days you can be up and at em again!
Jan. 2014-Evenings:
90% of the time, I would have to eat my meals alone in my bed over the last 2 years. I tried very hard to stay engaged in the family. I would still help with homework and all the things that come with having 3 busy kids. There were many nights that I was completely absent. I would be too sick to even lift my head off the pillow. My husband would have to go full blast family mode even after a long day at work. I would try very hard, but more nights than not, I was too sick to participate. We would all rejoice on the nights I could have any family time. It would usually warrant a very good Facebook post!
Now:
I finally get to serve my husband and children a wonderful dinner! This has been the MOST fun for me. I try to take an evening walk or bike ride at night. This is so exciting. If I'm not running about outside, I might whisk David off for a late night shopping run or to let me drive around a bit! After over 2 years of no shopping, I'm gonna go every chance I can get. I will spend many nights on the couch with the family instead of in the bed once I'm growing tired.
Jan. 2014-Exercise:
Up until February, I had been unable to do pretty much any exercise of any kind for 1.5 years. I tried a few things, but since I had to stay in a recumbent position (head up and legs up) at all times, it made anything impossible. That sure didn't help the waistline!
Now:
I slowly began using my recumbent bike in late February 2014 again. I've been able to go from 1-3 minutes to 22-25 minutes on the bike. I can speed walk about a mile or more on some days, ride my bike outside for 20 minutes, and slow walk from anywhere from 20 minutes to over an hour. Yep, this is the same person who passed out on a tilt table test in less than 3 minutes!
Jan. 2014-Sitting:
One of the worst things about having been so sick is the loss of my ability to sit in a chair like a normal person. This proved to be the most challenging obstacle. That meant: no restaurants, no dinner at the table, no church, no movies, no normal outings. Within 3 minutes, my legs would turn a deep red, and I would begin to feel ill and lightheaded.
Now:
I've increased my sitting time to about 20-30 minutes before I feel uncomfortable and my blood pressure drops. I still do not eat with my legs down, and I can only drive for short-short distances. However, I am still in the rehab stage of this. This is my BIGGEST wish and prayer. I hope that one day I will sit through a movie with my legs firmly planted on the floor without feeling poorly! As for now, I'm happy to be going to the movies even if it means my feet are hiked up on the seat in front of me! I've purchased a little stool to carry around with me when I need to sit down with legs elevated. This has meant I can ditch the wheelchair for sitting and trade it in for this little portable stool!
Jan. 2014-Good days vs Bad days:
Most days were bad days. A good day in Melanie's life was one where I could sit up in the bed and talk with the family. A good day was if I made it to the doctor's office without feeling too sick. A good day was maybe getting to cut my own apple for snack and preparing a sandwich for one of the kids. A good day might have been a ride in the car just to get some sunshine. A good day might have been several hours of pain free or if I could do something small that I hadn't been able to do on most days.
Now:
A good day is almost every day. No, I'm not symptom free and still haven't had a day without some sort of pain or discomfort. But it's so much more bearable. I really couldn't even put it into the correct words to explain the misery of the days of the PAST. But today, the moments of 'pain' will often fade away in the glory of all I can and will be doing. There are still series of 'dizzy' days that are making life unpredictable and difficult. They make me frustrated and a little upset, but I know there will be an end point. That was one of the things about being so sick for so long.....you know it will never, ever end.
This is just a brief little snap shot into my the huge change in my world. What a beautiful sight this has been for us all. The obstacles still exist and seem to creep up in unwanted and unexpected times, for sure......but it's so much easier to handle them knowing another 'fun' day is just waiting to be had. As the rain poured down last night on my complaining family during our quick grocery store run, I couldn't help but to rejoice and smile that I was given the privilege to RUN through the rain!!!!!!
Monday, September 8, 2014
Still progressing!
I'm still making progress!!! I've continued to do new things each week. After 3.5 years of being sick and over 2 years almost completely bed bound, I'm like a kid in a candy shop! Everything seems so new and exciting. All the old 'chores' of the past don't seem like chores at all. I've got a big goofy grin on my face just walking into the store with David to pick up some glue. Why? Because I just WALKED into the store! If you have followed any of my blog in the past 2 years, you will remember that I only dreamed of walking into a store again and actually getting to maneuver around on my own feet. I truly believed I would never, ever again do that without a wheelchair. BUT THEN............
I've had a few days where I have been pretty ill, but they haven't endured very long. I'm learning to be able to finally compartmentalize which dizziness is which. That has been epic for me. Knowing which kind is the get to the floor fast vs the vertiginous kind has made a world of difference. I'm now working with a new doctor who is trying to help me with the horrible vertigo from my chronic migraines that have added to the 'headache' (pun intended). We were able to find out the enormous amount of foods I'm actually allergic to and begin the research phase again. If the doctor can help me find these hidden triggers, it will immensely aid in my ability to rehab and improve as the dizziness continuously sets me back week after week. My heart hasn't enjoyed all of this activity, to say the least. My cardiologist will aid in this adventure in the next few weeks. Since there are not many people like me, it's very hard to find a proper cardiac rehab program to aid someone who cannot sit in a simple chair but can walk a mile! I also return to Mayo Clinic next month to continue the research stage of my chronically low plasma, gastroparesis, and unexplained hypoperfusion, and rare dysautonomia. However, I'm hoping to WALK right into that office on my own feet by that point. Wish me luck!
During the last few weeks I've been so busy with LIFE. I'm still homeschooling our youngest (which is more difficult this year). It's been a challenge to have to sit and work with her for 4-5 hours when I truly want to be up and about. I have to quickly remind myself something about where I'm laying my treasures. (Still a work in progress). I've also been cooking up a storm. This was one of my greatest passions before I became ill. I loved to prepare a meal from scratch and serve it cheerfully every evening. It's been so good to get back in the kitchen. We've all missed my cooking!!!!! I've also been enjoying the sunshine. It feels so good to have the wind in my hair and sun on my face as I'm walking or biking in the neighborhood. The most fun of all is getting to do normal things like walk into a store, pick out my own groceries, or decide which item I WANT. This has been so freeing!
My husband and I are scared to open our eyes and discover this is all one big dream. We've had this happen before (3 years ago), and we are both terrified of it all slipping away again. However, we are working VERY HARD not to concentrate on that but enjoy every minute! There are so many wonderful moments , even in the midst of a few dizzy days here and there. I've never had so much fun doing dishes in all my life!
I've had a few days where I have been pretty ill, but they haven't endured very long. I'm learning to be able to finally compartmentalize which dizziness is which. That has been epic for me. Knowing which kind is the get to the floor fast vs the vertiginous kind has made a world of difference. I'm now working with a new doctor who is trying to help me with the horrible vertigo from my chronic migraines that have added to the 'headache' (pun intended). We were able to find out the enormous amount of foods I'm actually allergic to and begin the research phase again. If the doctor can help me find these hidden triggers, it will immensely aid in my ability to rehab and improve as the dizziness continuously sets me back week after week. My heart hasn't enjoyed all of this activity, to say the least. My cardiologist will aid in this adventure in the next few weeks. Since there are not many people like me, it's very hard to find a proper cardiac rehab program to aid someone who cannot sit in a simple chair but can walk a mile! I also return to Mayo Clinic next month to continue the research stage of my chronically low plasma, gastroparesis, and unexplained hypoperfusion, and rare dysautonomia. However, I'm hoping to WALK right into that office on my own feet by that point. Wish me luck!
During the last few weeks I've been so busy with LIFE. I'm still homeschooling our youngest (which is more difficult this year). It's been a challenge to have to sit and work with her for 4-5 hours when I truly want to be up and about. I have to quickly remind myself something about where I'm laying my treasures. (Still a work in progress). I've also been cooking up a storm. This was one of my greatest passions before I became ill. I loved to prepare a meal from scratch and serve it cheerfully every evening. It's been so good to get back in the kitchen. We've all missed my cooking!!!!! I've also been enjoying the sunshine. It feels so good to have the wind in my hair and sun on my face as I'm walking or biking in the neighborhood. The most fun of all is getting to do normal things like walk into a store, pick out my own groceries, or decide which item I WANT. This has been so freeing!
My husband and I are scared to open our eyes and discover this is all one big dream. We've had this happen before (3 years ago), and we are both terrified of it all slipping away again. However, we are working VERY HARD not to concentrate on that but enjoy every minute! There are so many wonderful moments , even in the midst of a few dizzy days here and there. I've never had so much fun doing dishes in all my life!
Monday, August 18, 2014
So...where is Melanie?
I have been pretty MIA on my blog in the last few weeks and have not been updating much. Why? you may ask. Well, I haven't been on computer lately. There has been a huge turn of events.......
As I have posted the last few months, I have been slowly making some interesting improvements since last February. They have been modest, but consistent improvements. I had been using my recumbent bike religiously...even on my really icky days. I had been slowly pushing the envelope, so to speak, with every day tasks. My stand times had continued to increase and my endurance had been slowly creeping upward. Just as I had thought I'd reached my maximum, I got a second wind.
Over the last 6 weeks or so, I have begun to make some significant improvements. The roadblock that I had seemed to reach has been slowly coming down piece by piece. My confidence has also begun to soar as I tested new boundaries. I have finally broken down some major walls and have and can honestly say that I've made some meaningful improvements!
I have been increasing my walking, stationary biking, and cooking time day by day. I've gone from 90 seconds of walking to about 30 minutes (brisk walking in the neighborhood). I've gone from cutting an apple to making a full dinner (some days). I've gone from recumbent bike to speeding around the neighborhood with the wind in my hair! I've played ping-pong, stood in a store, and danced it out all for the first time in 2 long years!!!!!
While I'm dancing, walking, cooking, playing, talking, laughing, and loving life.....I still cannot put my legs down for any significant amount of time. This is so puzzling to me. I can walk around and really exercise, but the second I quit moving I begin to feel ill. I'm also still battling with disabling dizziness, lightheadedness, off balance, nausea, low blood pressures, and significant blood flow issues. As long as I have such low plasma levels, I will probably continue to have these symptoms. Mayo Clinic is still working on this, and my visit in October will hopefully yield some new suggestions and treatments. My heart also continues to be a bit of a pain at times, but doesn't slow me down very much. I can feel relatively well for several days before the dizziness returns and knocks me down for a week or 2. My mother is currently here working on this with me. We are coming up with strategies to combat this thorn in my side. I am never fully 'pain free', and I am praying and hope that that will be the next exciting hurdle I leap across.
In the meantime, I'm rejoicing in the joy of today...and for a change...it's not something I have to force myself to do....Joy is coming on like a flood each day! I am a little frustrated at times because now that I am able to do more, I have more to lose. I can't stand having to stop something because my body won't behave naturally. I will have a long----long road of rehab and recovery ahead of me if I do continue to improve. After 2 years in the bed, my body has a long way to go! However, with 3 walks a day, a bike ride, and some home exercises, I would say I will knock that part out with all the 'heart' you can imagine!
Can you possibly imagine that after 3.5 years of illness and 2 years of being bed bound, I am jumping about the house and seeing the beauty in the smallest of things. I took a short walk in our woods behind our home and actually heard the crackling of the twigs beneath my feet. I walked into a store (for only a few moments, of course) and got to look "normal" for the first time in 2 years. I've felt the wind blowing in my hair as I biked down the street. I've been able to serve my family (my hearts' greatest desire) for meals once again. 2 years ....2 LONG-LONG-LONG-LONG years in the bed...nothing is going to go unnoticed, untried, or unchanged! It's like the song says..."and if you get the choice to sit it out or dance, I hope you dance." Well, I'm dancing...and often to my own tune. I'm sure the people in Steinmart thought my mother and I were crazy dancing to the music, but I was on my OWN FEET ...and we chose to dance!
For now, I'm needing to focus on the work ahead, months and months of rehab (again), the physical stumbling blocks ahead of me, the continued research on why my body doesn't always behave well, finding the how and why my body will suddenly 'stop', and learning to re-do many daily tasks. I am still in shock right now and everything is quite surreal for us all. We don't want to get too excited! (been there-done that) But for now...if you need me, try the bike, the pool, the woods, the neighborhood, or maybe even a restaurant! :)
As I have posted the last few months, I have been slowly making some interesting improvements since last February. They have been modest, but consistent improvements. I had been using my recumbent bike religiously...even on my really icky days. I had been slowly pushing the envelope, so to speak, with every day tasks. My stand times had continued to increase and my endurance had been slowly creeping upward. Just as I had thought I'd reached my maximum, I got a second wind.
Over the last 6 weeks or so, I have begun to make some significant improvements. The roadblock that I had seemed to reach has been slowly coming down piece by piece. My confidence has also begun to soar as I tested new boundaries. I have finally broken down some major walls and have and can honestly say that I've made some meaningful improvements!
I have been increasing my walking, stationary biking, and cooking time day by day. I've gone from 90 seconds of walking to about 30 minutes (brisk walking in the neighborhood). I've gone from cutting an apple to making a full dinner (some days). I've gone from recumbent bike to speeding around the neighborhood with the wind in my hair! I've played ping-pong, stood in a store, and danced it out all for the first time in 2 long years!!!!!
While I'm dancing, walking, cooking, playing, talking, laughing, and loving life.....I still cannot put my legs down for any significant amount of time. This is so puzzling to me. I can walk around and really exercise, but the second I quit moving I begin to feel ill. I'm also still battling with disabling dizziness, lightheadedness, off balance, nausea, low blood pressures, and significant blood flow issues. As long as I have such low plasma levels, I will probably continue to have these symptoms. Mayo Clinic is still working on this, and my visit in October will hopefully yield some new suggestions and treatments. My heart also continues to be a bit of a pain at times, but doesn't slow me down very much. I can feel relatively well for several days before the dizziness returns and knocks me down for a week or 2. My mother is currently here working on this with me. We are coming up with strategies to combat this thorn in my side. I am never fully 'pain free', and I am praying and hope that that will be the next exciting hurdle I leap across.
In the meantime, I'm rejoicing in the joy of today...and for a change...it's not something I have to force myself to do....Joy is coming on like a flood each day! I am a little frustrated at times because now that I am able to do more, I have more to lose. I can't stand having to stop something because my body won't behave naturally. I will have a long----long road of rehab and recovery ahead of me if I do continue to improve. After 2 years in the bed, my body has a long way to go! However, with 3 walks a day, a bike ride, and some home exercises, I would say I will knock that part out with all the 'heart' you can imagine!
Can you possibly imagine that after 3.5 years of illness and 2 years of being bed bound, I am jumping about the house and seeing the beauty in the smallest of things. I took a short walk in our woods behind our home and actually heard the crackling of the twigs beneath my feet. I walked into a store (for only a few moments, of course) and got to look "normal" for the first time in 2 years. I've felt the wind blowing in my hair as I biked down the street. I've been able to serve my family (my hearts' greatest desire) for meals once again. 2 years ....2 LONG-LONG-LONG-LONG years in the bed...nothing is going to go unnoticed, untried, or unchanged! It's like the song says..."and if you get the choice to sit it out or dance, I hope you dance." Well, I'm dancing...and often to my own tune. I'm sure the people in Steinmart thought my mother and I were crazy dancing to the music, but I was on my OWN FEET ...and we chose to dance!
For now, I'm needing to focus on the work ahead, months and months of rehab (again), the physical stumbling blocks ahead of me, the continued research on why my body doesn't always behave well, finding the how and why my body will suddenly 'stop', and learning to re-do many daily tasks. I am still in shock right now and everything is quite surreal for us all. We don't want to get too excited! (been there-done that) But for now...if you need me, try the bike, the pool, the woods, the neighborhood, or maybe even a restaurant! :)
Thursday, July 10, 2014
Health update July 2014
We've been back from Mayo for a little over 3 weeks now. Things have been really busy for our family around here. (Of course, with 3 kids and 3 separate schedules...when is it not?)
My stand time over the last few months has gone up again. I can stand anywhere from 5-20 minutes. The times I get to be up and around for 20 minutes are huge blessings! I've taken full advantage of them. I cannot stand in one place, but if I'm moving around, somedays I can even cook a small meal with help. I cooked something for the family for the first time in YEARS!
With all the blessings of standing longer, I've also had some lows. I'm battling with chronic dizziness again. This happens every 3-4 months and lasts for weeks. It can get quite annoying. My blood pressures are lower than normal and making my days not as cheerful. I've been able to do 3-7 minutes at a time on the recumbent bike for months now, but am frustrated with the dizzy spells making me not eager to do so. When I'm not up and about, I'm usually not feeling very well. I have to be in bed several hours a day with my head on the pillow. It's truly a crazy roller coaster ride each day. (So much uncertainty each day) Some of the revealing test data has given me some peace when certain things arise. Just the new understanding of why it's happening to me has been very freeing!
I'm continuing some of my testing at home until I return to Mayo in October for another round of tests. My biggest challenge right now is keeping my mind OFF of my illness. After 2 intense weeks at Mayo, it was 24/7 focus on 'sickness.' I have to work very hard to keep my mind on my family, my hobbies, my life, and the summer! It's very important for anyone suffering with chronic illness to not allow the diagnosis, the information, the tests, and the illness to become all consuming. For that reason, I'm not talking much about the upcoming return trip to Mayo or how I'm feeling. I can't ignore how crappy I feel, but after a prolonged focus on my symptoms, it's time to put that to rest for the next 3 months and focus on family! It's easier said than done----trust me on that one!
So, unless there is a big change, I probably won't be doing much 'health' updates for the next few months. I will continue to blog about living life with chronic illness and about life. I cannot escape my illness or its immense limitations, but I can allow the day to be about LIVING and not about sickness.
(read more about living life with chronic illness by clicking on the links to the left)
My stand time over the last few months has gone up again. I can stand anywhere from 5-20 minutes. The times I get to be up and around for 20 minutes are huge blessings! I've taken full advantage of them. I cannot stand in one place, but if I'm moving around, somedays I can even cook a small meal with help. I cooked something for the family for the first time in YEARS!
With all the blessings of standing longer, I've also had some lows. I'm battling with chronic dizziness again. This happens every 3-4 months and lasts for weeks. It can get quite annoying. My blood pressures are lower than normal and making my days not as cheerful. I've been able to do 3-7 minutes at a time on the recumbent bike for months now, but am frustrated with the dizzy spells making me not eager to do so. When I'm not up and about, I'm usually not feeling very well. I have to be in bed several hours a day with my head on the pillow. It's truly a crazy roller coaster ride each day. (So much uncertainty each day) Some of the revealing test data has given me some peace when certain things arise. Just the new understanding of why it's happening to me has been very freeing!
I'm continuing some of my testing at home until I return to Mayo in October for another round of tests. My biggest challenge right now is keeping my mind OFF of my illness. After 2 intense weeks at Mayo, it was 24/7 focus on 'sickness.' I have to work very hard to keep my mind on my family, my hobbies, my life, and the summer! It's very important for anyone suffering with chronic illness to not allow the diagnosis, the information, the tests, and the illness to become all consuming. For that reason, I'm not talking much about the upcoming return trip to Mayo or how I'm feeling. I can't ignore how crappy I feel, but after a prolonged focus on my symptoms, it's time to put that to rest for the next 3 months and focus on family! It's easier said than done----trust me on that one!
So, unless there is a big change, I probably won't be doing much 'health' updates for the next few months. I will continue to blog about living life with chronic illness and about life. I cannot escape my illness or its immense limitations, but I can allow the day to be about LIVING and not about sickness.
(read more about living life with chronic illness by clicking on the links to the left)
THE FIRST MEAL I HAVE MADE FOR MY FAMILY IN YEARS. I HAD TO HAVE SOME HELP GETTING THE THINGS IN AND OUT OF FRIDGE AND CUTTING UP THE VEGGIES, BUT I WAS ABLE TO COOK MYSELF!
Monday, July 7, 2014
You don't beat chronic illness, you live with it!
Does anyone really ever learn to live with chronic illness? How can a person resolve to live with constant pain and chronic illness for the rest of their lives? Each battle is so unique and each person has their own journey. However, there is a common thread. Living with chronic illness is not only a difficult challenge day in and day out, but also something that will shape the rest of your life. While someone cannot control their illness, they do have some power over how the illness will control them.
Let's clarify something here for those who are not familiar with chronic illness.
Chronic illness is NOT cancer. You don't 'fight' it. You don't 'beat' it. You cannot 'will' it away, or believe it doesn't exist. We do not use the words 'cure' to mean 'treat', or 'fight' to mean 'deal' with.
Chronic Illness is:Let's clarify something here for those who are not familiar with chronic illness.
Chronic illness is NOT cancer. You don't 'fight' it. You don't 'beat' it. You cannot 'will' it away, or believe it doesn't exist. We do not use the words 'cure' to mean 'treat', or 'fight' to mean 'deal' with.
- Dealing with
- Coping
- Managing
- Containing
- Living with
- Controlling
- Putting up with
- Handling
- Living with
Nearly 1 out of every 2 Americans suffer from some sort of chronic illness (approx 133 million). Over 26 million Americans have some sort of severe disability/illness. While some diseases are due to poor health habits, many are genetic, contracted, or of no fault of the patient. Chronic illness can be anything from fibromyalgia, diabetes, arthritis, to such things as Crohn's, lupus, cardiovascular conditions/diseases, dysautonomias, multiple sclerosis, Parkinson's, rheumatoid arthritis, and so many more! 7 out of 10 deaths in the U.S. are from chronic illness alone. The severity and the longevity of the illness can be as different as night and day. But learning to live with any chronic illness can take its toll on the individual and their family and be a daunting daily task just to thrive.
In addition to dealing with their individual disease or illness and all that it entails, many chronically ill patients can and do often suffer from other side-effects from being chronically ill. I've tried to research (and, of course, use some from personal experience) a few of the most prominent things a chronic illness sufferer may have to deal with in addition to their already difficult consolation of disease symptoms.
- Depression
- Poor nutrition due to lack of appetite or overeating
- Sleeplessness
- Isolation
- Aches and pains from lack of ability to exercise
- Feeling of doom or fear
- Medicinal side-effects
- Lack of intimacy
- Loneliness
- Stress
- Lack of emotional or physical support
- Anger
- Headaches
- Financial difficulties due to expensive medical treatments and/or loss of work
- Loss of relationships
- Inability to participate in normal activities of life due to physical limitations or lack of mobility access in public places
- Physical sensitivities: such as foods, lights, chemicals, noises
- Lack of activities and social outings
- Guilt
- Lack of control over life and circumstances
- Burden to caregivers and family
- Inability to lead a 'normal' life, career, or education
- Fatigue
- Feeling overwhelmed
- Constant focus on the illness and not the individual
- And I'm sure there are many, many more!
So, if nearly 1 out of every 2 Americans deal with some sort of chronic illness, where do we go from here?
What are some ways to deal with and cope with chronic illness?
- If you can change your lifestyle to fix your illness....DO IT! (e.g. some types of diabetes, hypertension, some forms of heart disease, and a few others)
- Get informed! Learn about your disease so that you can help yourself. Knowledge is power.
- Find a good doctor. This is imperative to your care. You need to know you are trying the best medications and therapies to ease the pain and discomfort. Know that you doctor is on your team.
- Seek support from others who are suffering from some sort of illness similar to yours.
- Watch your mental health. Seek professional counselors for those dealing with severe chronic illness or life altering diseases. You can't do this on your own. Dealing with the guilt, fear, depression, and dramatic changes can be overwhelming.
- Keep active! Easier said than done. But as someone who has had as little as 90 seconds of stand time, there is always something physical that you can do, even from the bed. It helps your muscles, aches and pains, and mental health. It can be as simple as bed leg raises, just do it every day!
- Think positively! Again, easier said than done! I choose joy! It's a choice even in the face of severe physical limitations and pain. People who see the good in life tend to deal with chronic illness easier than others. Just choose joy!
- Be deliberate about your circle of support. You may have to do some pruning along the way. Not everyone in your family or circle of friends will be your support system. You need people who will encourage, be present, and be proactive with you!
- Remember you are more than your disease. Spend the time needed to research and seek medical treatment, but don't let it define you. Continue your hobbies, relationships, and activities as you can.
- You will have good days and bad days. Learning to live within those parameters is one of the hardest things for me. Accept what you cannot change.
- If your physical limitations have required you to withdraw, try to keep connected with friends and family. Use the internet, phones, and texting if that's all you can do. Don't withdraw completely.
- Join a support group. (But be aware of the 'woe is me' and the one credit short of a PhD members) :)
- Open up! People don't know how to help most of the time unless you tell them. Explain what helps and what doesn't.
- Pray! Studies show that those with faith based views tend to have less depression and deal with the long term effects of illness with more ease as a whole.
- Eat healthy. No matter what illness you have, eating poorly can add to the side effects of your illness.
- Get rid of the unnecessary stress. You have enough to deal with already without adding to the stress. Weed out and prune often.
- Allow time for relationships, intimacy, and friendship. If you are married, it doesn't mean the romance had to die with your old life. Be creative, make new memories, and celebrate the little things.
- Create a new measuring system. A person who is chronically ill can no longer measure success by the same standard, rewrite your algorithm. Today might be considered amazing because you were able to spend time reading a book to your child. If you continue to measure happiness by the old standard, you will continue to be disappointed.
- Remember you get to be happy, too! Just because you are sick doesn't mean you cannot enjoy life. Allow yourself to be happy. Buy something just for you. Make the room where you stay most often a happy and cheerful place.
- Acceptance. Learning to accept the cards you have been dealt is half the battle. If you cannot fix it, make the best of it. It's all about turning those lemons to lemonade!
- DON'T STOP DREAMING! Your dreams may have changed or need to be revised, but you can and should still dream. Give yourself a new thing to strive for that has nothing to do with your health. It doesn't even have to be a physical dream. Just don't stop dreaming!
Monday, June 23, 2014
MAYO CLINIC visit #2
As you probably well know, we just returned from Mayo Clinic after 2 very long, grueling weeks of testings. The purpose of the this visit was initially to find out if there was some type of link between my eldest son's new dysautonomia symptoms and my own illness. If you know anything about Mayo Clinic, you know they send you from test to test to test all day long, every day. This was Mayo Clinic on turbo mode with both my son and myself seeing teams of doctors and testing.
MY SON:
My son's diagnosis of POTS was confirmed pretty early on after testing, and by the end of week 1, there was nothing standing out in the blood work or otherwise to suggest there is some strange genetic autoimmune disease at this point. He was given scripts for beta blockers and another medicine and will be treated with supportive care. As long as he is able to continue playing tennis and his symptoms do not worsen, they believe he could outgrow this by his early to mid twenties. He remains very active with just a few minor limitations at this point. However, because of my illness being in the equation, they were quick to tell us they have no way of knowing what the future could/would hold. He will be seen by a cardiologist every few months, but as long as he remains the same, and follows their recommendations, they are optimistic his condition will not worsen. As he is a very private person, he has requested no more information be shared beyond this update. He wants to be a normal teenager, and we are respecting his decision. He has coveted the prayers and support of so many!
ME:
I ended up having to stay an extra week for more testing as the needle in the haystack search continued. As usual, I continued to baffle my doctors since I still to this day do not follow the algorithm or curve for a known type of dysautonomia. I was lucky to have a great team to work with and one doctor in particular really stood out. When the others began the all to familiar 'there is nothing more we can do to improve your current situation', he bucked the system and went a completely different route. He ordered some new tests that had never been done before. When the results came back ABNORMAL, he realized there is possibly a whole new spectrum to pursue. Let me try to make this LONG story...short! I am not going to bore you with all the medical jargon, tedious tests and results, and all the ends and outs. I'll give the bottom line!
Tests are revealing some new findings that are pointing the doctors in a new direction. They will be spending the next few months formulating and coming up with BRAND NEW TESTING AT MAYO CLINIC JUST FOR ME! Given the type of dysautonomia I have is very different from most types they see (not the worst, of course, but very different and in a class of its own), they are going to research new ways to study what is happening inside my body to not allow me to stand or have my legs down. It still blows my mind that Mayo Clinic is going to formulate new tests for ME. My momma always told me I was unique! I will return to Mayo Clinic in 3-4 months, and then again after that.
GOOD NEWS: They confirmed what the doctors at Vanderbilt had told us! I am not in failure and my body, while very broken, is thriving and will continue to thrive. I have made some big improvements since last January and have gotten stronger. My heart has gotten stronger and my blood pressures have become more stable and less erratic. My tests show I have made some modest improvements. Doctors feel there is a chance to one day be able to sit with my legs down and become a bit more mobile.
INDIFFERENT NEWS: While they feel I have a chance at getting these legs down, I will most likely not live a 'normal' life and never make a full recovery. (We already knew that, of course, but we didn't know I would live a long disabled life, either) New testing revealed multiple abnormalities in multiple systems (the significance and medical explanation is detailed and confusing, I won't go into all the ins and outs, but let's just say given my situation it will be a difficult fix) Another significant finding (which should have been done long ago) shows some promise as to why I haven't responded to any medications. They have a theory with some data to back it up, but no fix or even a test, as of yet. They believe they have pinpointed at least 3 reasons why I didn't show any recovery signs and appeared to be in complete autonomic failure with such a rapid decline. (which I am not, thank God!) While this should be in the good news category, they told me right away: as of right now, they have no way of fixing this problem as of yet, but will begin the research before my next visit. The new findings are cumbersome.. A few things were a surprise to us, but nothing could possibly get us down after hearing the words 'CAUTIOUSLY OPTIMISTIC' to make some improvements after all I went through last winter.
I am doing surprisingly well after such a difficult two weeks. I am continuing some tests locally to gather data for the neurologist to continue his research before my next visit. I was totally prepared to hear the words I've heard so many times: "I'm sorry, there is nothing more we can do." Instead, I was told they would even invent new testing for me to try somehow to find a way for me to live a more productive life. I must be very careful with my anticipation and excitement. We've walked these halls before! My family has to be very conscious how we approach any news, whether good or bad, because the opposite result can be very damaging mentally for us all. We've seen improvements turn to ashes too many times, so we try to not jump to any premature conclusions. It's important for those who surround us to do the same. WE are grateful to all who are supporting and praying for us during the next few months. I have several new medicines and therapies to begin, and we are looking forward to seeing where they lead me!
We plan on continuing business as usual around here. Our emotions are continuously on a roller coaster and 'sickness' tends to be a dominant ride at our home. As much as we try to change the conversation, it often rears its ugly head at the most inopportune times. However, as a family, we are striving very hard to keep our eyes focused on living a full, happy, and joyful life! Some days are not quite as joyful, but the collaborated effort is ever present. After two full weeks of nothing but doctors, tests, medicines, and the constant focus on sickness, I personally, am trying very hard to renew my mind. (ok, I said TRYING!) :)
MY SON:
My son's diagnosis of POTS was confirmed pretty early on after testing, and by the end of week 1, there was nothing standing out in the blood work or otherwise to suggest there is some strange genetic autoimmune disease at this point. He was given scripts for beta blockers and another medicine and will be treated with supportive care. As long as he is able to continue playing tennis and his symptoms do not worsen, they believe he could outgrow this by his early to mid twenties. He remains very active with just a few minor limitations at this point. However, because of my illness being in the equation, they were quick to tell us they have no way of knowing what the future could/would hold. He will be seen by a cardiologist every few months, but as long as he remains the same, and follows their recommendations, they are optimistic his condition will not worsen. As he is a very private person, he has requested no more information be shared beyond this update. He wants to be a normal teenager, and we are respecting his decision. He has coveted the prayers and support of so many!
ME:
I ended up having to stay an extra week for more testing as the needle in the haystack search continued. As usual, I continued to baffle my doctors since I still to this day do not follow the algorithm or curve for a known type of dysautonomia. I was lucky to have a great team to work with and one doctor in particular really stood out. When the others began the all to familiar 'there is nothing more we can do to improve your current situation', he bucked the system and went a completely different route. He ordered some new tests that had never been done before. When the results came back ABNORMAL, he realized there is possibly a whole new spectrum to pursue. Let me try to make this LONG story...short! I am not going to bore you with all the medical jargon, tedious tests and results, and all the ends and outs. I'll give the bottom line!
Tests are revealing some new findings that are pointing the doctors in a new direction. They will be spending the next few months formulating and coming up with BRAND NEW TESTING AT MAYO CLINIC JUST FOR ME! Given the type of dysautonomia I have is very different from most types they see (not the worst, of course, but very different and in a class of its own), they are going to research new ways to study what is happening inside my body to not allow me to stand or have my legs down. It still blows my mind that Mayo Clinic is going to formulate new tests for ME. My momma always told me I was unique! I will return to Mayo Clinic in 3-4 months, and then again after that.
GOOD NEWS: They confirmed what the doctors at Vanderbilt had told us! I am not in failure and my body, while very broken, is thriving and will continue to thrive. I have made some big improvements since last January and have gotten stronger. My heart has gotten stronger and my blood pressures have become more stable and less erratic. My tests show I have made some modest improvements. Doctors feel there is a chance to one day be able to sit with my legs down and become a bit more mobile.
INDIFFERENT NEWS: While they feel I have a chance at getting these legs down, I will most likely not live a 'normal' life and never make a full recovery. (We already knew that, of course, but we didn't know I would live a long disabled life, either) New testing revealed multiple abnormalities in multiple systems (the significance and medical explanation is detailed and confusing, I won't go into all the ins and outs, but let's just say given my situation it will be a difficult fix) Another significant finding (which should have been done long ago) shows some promise as to why I haven't responded to any medications. They have a theory with some data to back it up, but no fix or even a test, as of yet. They believe they have pinpointed at least 3 reasons why I didn't show any recovery signs and appeared to be in complete autonomic failure with such a rapid decline. (which I am not, thank God!) While this should be in the good news category, they told me right away: as of right now, they have no way of fixing this problem as of yet, but will begin the research before my next visit. The new findings are cumbersome.. A few things were a surprise to us, but nothing could possibly get us down after hearing the words 'CAUTIOUSLY OPTIMISTIC' to make some improvements after all I went through last winter.
I am doing surprisingly well after such a difficult two weeks. I am continuing some tests locally to gather data for the neurologist to continue his research before my next visit. I was totally prepared to hear the words I've heard so many times: "I'm sorry, there is nothing more we can do." Instead, I was told they would even invent new testing for me to try somehow to find a way for me to live a more productive life. I must be very careful with my anticipation and excitement. We've walked these halls before! My family has to be very conscious how we approach any news, whether good or bad, because the opposite result can be very damaging mentally for us all. We've seen improvements turn to ashes too many times, so we try to not jump to any premature conclusions. It's important for those who surround us to do the same. WE are grateful to all who are supporting and praying for us during the next few months. I have several new medicines and therapies to begin, and we are looking forward to seeing where they lead me!
We plan on continuing business as usual around here. Our emotions are continuously on a roller coaster and 'sickness' tends to be a dominant ride at our home. As much as we try to change the conversation, it often rears its ugly head at the most inopportune times. However, as a family, we are striving very hard to keep our eyes focused on living a full, happy, and joyful life! Some days are not quite as joyful, but the collaborated effort is ever present. After two full weeks of nothing but doctors, tests, medicines, and the constant focus on sickness, I personally, am trying very hard to renew my mind. (ok, I said TRYING!) :)
Wednesday, June 11, 2014
Another week......
Well, one week and constant, non-stop, back to back appointments just were not enough! We gotta add another week. While that is not ideal for anyone.....(aka: me)....the doctors are looking in another direction to see if they can't find something that will help my current, permanent supine position.
Doctors have made some headway with my son, and we'll finish out his tests and appointments by this Friday. He will have to stay with me and be my wheelchair chauffeur for the week. My husband will return next Friday for the final consultations and hope and pray they have some new kind of treatment plan (right now it's more like 50-50)
For now, we are beyond exhausted! We are all very tired and worn out. However, we are getting all the necessary tests DONE!
Doctors have made some headway with my son, and we'll finish out his tests and appointments by this Friday. He will have to stay with me and be my wheelchair chauffeur for the week. My husband will return next Friday for the final consultations and hope and pray they have some new kind of treatment plan (right now it's more like 50-50)
For now, we are beyond exhausted! We are all very tired and worn out. However, we are getting all the necessary tests DONE!
Thursday, June 5, 2014
Here we go.......Mayo Clinic, again!
School has come to an end, all activities have ceased, and the official start to summer has begun. Summer has begun without our usual sigh of relief. We all know this means we must now come back into our reality that we so neatly tucked away during the stress and excitement of all spring had to offer.
We leave in the next few days for our trip to Mayo Clinic. My son will undergo his first ever round of grueling, autonomic testing. I will have to put myself through hell once again doing the same tests I've had over and over again for the ever so slight chance that something could point them in a new direction of treatment.
We haven't done much talking about the tests or what it all means. We've kept it pretty much baseline. We have talked about how much fun we will try to have in the evenings and on our down time. (We rarely get to be all together away from the stress of our lives and my illness) However, from experience, Mayo doesn't give you very much down time especially when there are 2 of you seeing teams of doctors and having quite a few tests scheduled.
We should know before we leave if they have come up with any new ideas for myself or what course of action they will take with my son's treatment. Emotions will be running high, but if the past is my guide, we will be all focused on our schedules, the tests at hand, shopping and restaurants, and my son's birthday. Yes, my oldest son will turn 15 while we are at Mayo Clinic. In fact, some of his toughest tests are actually on his birthday. He's being a real trooper about it all! But then again, he always is!
I thank everyone who has been flooding us with encouragement during the last few weeks. We are not overly optimistic, but we are holding on to the fact that this 'sliver' of hope exists! We covet your thoughts and prayers during the next 10+ days!
We leave in the next few days for our trip to Mayo Clinic. My son will undergo his first ever round of grueling, autonomic testing. I will have to put myself through hell once again doing the same tests I've had over and over again for the ever so slight chance that something could point them in a new direction of treatment.
We haven't done much talking about the tests or what it all means. We've kept it pretty much baseline. We have talked about how much fun we will try to have in the evenings and on our down time. (We rarely get to be all together away from the stress of our lives and my illness) However, from experience, Mayo doesn't give you very much down time especially when there are 2 of you seeing teams of doctors and having quite a few tests scheduled.
We should know before we leave if they have come up with any new ideas for myself or what course of action they will take with my son's treatment. Emotions will be running high, but if the past is my guide, we will be all focused on our schedules, the tests at hand, shopping and restaurants, and my son's birthday. Yes, my oldest son will turn 15 while we are at Mayo Clinic. In fact, some of his toughest tests are actually on his birthday. He's being a real trooper about it all! But then again, he always is!
I thank everyone who has been flooding us with encouragement during the last few weeks. We are not overly optimistic, but we are holding on to the fact that this 'sliver' of hope exists! We covet your thoughts and prayers during the next 10+ days!
Tuesday, June 3, 2014
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