Consider it Pure Joy will still exist to serve the purpose of more of my HES posts and a place to post about my family life and things that the Lord is teaching me.
Thanks so much for being a reader of my blogs!
~Heather
Monday, December 6, 2010
New Blog!
I've created a new blog that will strictly be dedicated to my coupon deals, shopping trips and recipes. Please follow me on my new blog here.
Saturday, October 9, 2010
Great article on HES
https://acrobat.com/#d=bRuOK4Ejpa4C5yWrwisfTg
The above link takes you to a great article on HES and probably the most up to date one that we have on the internet. If you do read it I am in the 50% of people that have unclassified HES.
http://www.patient.co.uk/doctor/Hypereosinophilic-Syndrome.htm
I also found this link above today and think that it's one of the best artitcles by far that I've ever read on the web. If you're one that likes to read about weird medical stuff! :)
The above link takes you to a great article on HES and probably the most up to date one that we have on the internet. If you do read it I am in the 50% of people that have unclassified HES.
http://www.patient.co.uk/doctor/Hypereosinophilic-Syndrome.htm
I also found this link above today and think that it's one of the best artitcles by far that I've ever read on the web. If you're one that likes to read about weird medical stuff! :)
Thursday, October 7, 2010
HES/Heart valve issues
Dear friends,
I don't even know where to begin other than to say that I'm requesting prayer. You all have graciously accompanied me in my journey and I'm thankful for that. Your friendship and prayer support mean more to me than you guys know. I'm not one that hides what's going on with me, so I'm writing a detailed note so that you understand the "why" behind my disease and prayer request.
Today I found out that one of my heart valves is leaking. I had an echo cardiogram in February and it was mostly "normal" so this has progressed since then. I've not been feeling well for around 1 month and have had several symptoms, so honestly I'm not at all surprised by this finding...however, I won't lie...I do feel a bit numb today with this news and am desperately clinging to Jesus as I sort through this. I'm being referred to a cardiologist and will update you as necessary.
My disorder, Hypereosinophilic Syndrome (HES), is known to attack organs. So far, only my gastrointestinal tract was affected up until about 14 months ago (8/09). It was then that I started wheezing for the first time ever in my life so that leads us to believe that my lungs have been affected. Then in February of this year a heart murmur was detected for the first time. Like I said, about 1 month ago I started having problems wheezing again and had a weird heart beat. Brian would listen to my heart and could hear the murmur and knew that it was louder. I could also feel it and sometimes I can hear it in my head...even today.
The concern with this is that HES is known to cause heart damage and almost always starts with the heart valves. My doctor's are doing everything they know to do, but the reality is that HES is so rare (as of now there are only about 250 reported cases of HES world wide!) and poorly understood so there are a lot of unknowns. What we do know is that heart problems are the leading cause of fatalities with this disorder. Sorry to bear such ugly news, but I'm a realist at heart.
Eosinophils are white blood cells that react to infections and allergies in the body. They are released and fight off those invaders and then they go away. Up until now I've been tested several times and have no known allergies or infections that are causing my over abundance eosinophils. Therefore, it is assumed that I have an autoimmune disorder...meaning that my body is fighting itself for no known reason. Eosinophils release granules in the body and it's those granules that damage the organs. They harbor in the tissues and they stay there a long time and cause inflammation of those tissues. This is why I have stomach ulcers all the time, it's also why I wheeze and now (I'm assuming because it's not yet confirmed) that they've caused the damage to my heart.
There are meds that help to decrease the eosinophils and that's why I'm currently on a certain chemotherapy. However, my chemo has now caused problems with my blood. My red and white cells are pretty much bottomed out. My doctor lowered my dose of chemo and put me on iron since I'm now anemic hoping to increase my blood counts a little bit.
I'm kind of in a catch 22 in that we don't want the count too high as it will allow my disease to progress faster, but we don't want them too low either!
Okay, so now you all see why I need prayer. I'm bummed today, but I will jump over that hurdle and get over it. I know that the Lord is in control, that He has ordained my steps and that He has my best interest at heart. I admit that the enemy would really like to take hold of my thoughts, so please pray that I can take those captive and live for today. Please pray for healing, wisdom for my doctors and pray for our marriage as this is sometimes very difficult on it. I also need prayer for energy and physical strength as this has made me really tired and weak. As of right now we haven't told the kids anything so pray that they have understanding and little or no fear and that we have wisdom in what to say...if anything...
Thanks for your love & prayers and for reading my very long note! :)
In Him,
~Heather
***It's been awhile since I've written an update on here. First let me say sorry about my book review. It's obviously not going along like I had hoped....but, I will finish it! I'm determined! However, it will be at least another 2 weeks before I start on it. In the meantime, I'm attending the True Women Conference in Ft. Worth next week and hoping that I'll have even more to share when I get back!
I don't even know where to begin other than to say that I'm requesting prayer. You all have graciously accompanied me in my journey and I'm thankful for that. Your friendship and prayer support mean more to me than you guys know. I'm not one that hides what's going on with me, so I'm writing a detailed note so that you understand the "why" behind my disease and prayer request.
Today I found out that one of my heart valves is leaking. I had an echo cardiogram in February and it was mostly "normal" so this has progressed since then. I've not been feeling well for around 1 month and have had several symptoms, so honestly I'm not at all surprised by this finding...however, I won't lie...I do feel a bit numb today with this news and am desperately clinging to Jesus as I sort through this. I'm being referred to a cardiologist and will update you as necessary.
My disorder, Hypereosinophilic Syndrome (HES), is known to attack organs. So far, only my gastrointestinal tract was affected up until about 14 months ago (8/09). It was then that I started wheezing for the first time ever in my life so that leads us to believe that my lungs have been affected. Then in February of this year a heart murmur was detected for the first time. Like I said, about 1 month ago I started having problems wheezing again and had a weird heart beat. Brian would listen to my heart and could hear the murmur and knew that it was louder. I could also feel it and sometimes I can hear it in my head...even today.
The concern with this is that HES is known to cause heart damage and almost always starts with the heart valves. My doctor's are doing everything they know to do, but the reality is that HES is so rare (as of now there are only about 250 reported cases of HES world wide!) and poorly understood so there are a lot of unknowns. What we do know is that heart problems are the leading cause of fatalities with this disorder. Sorry to bear such ugly news, but I'm a realist at heart.
Eosinophils are white blood cells that react to infections and allergies in the body. They are released and fight off those invaders and then they go away. Up until now I've been tested several times and have no known allergies or infections that are causing my over abundance eosinophils. Therefore, it is assumed that I have an autoimmune disorder...meaning that my body is fighting itself for no known reason. Eosinophils release granules in the body and it's those granules that damage the organs. They harbor in the tissues and they stay there a long time and cause inflammation of those tissues. This is why I have stomach ulcers all the time, it's also why I wheeze and now (I'm assuming because it's not yet confirmed) that they've caused the damage to my heart.
There are meds that help to decrease the eosinophils and that's why I'm currently on a certain chemotherapy. However, my chemo has now caused problems with my blood. My red and white cells are pretty much bottomed out. My doctor lowered my dose of chemo and put me on iron since I'm now anemic hoping to increase my blood counts a little bit.
I'm kind of in a catch 22 in that we don't want the count too high as it will allow my disease to progress faster, but we don't want them too low either!
Okay, so now you all see why I need prayer. I'm bummed today, but I will jump over that hurdle and get over it. I know that the Lord is in control, that He has ordained my steps and that He has my best interest at heart. I admit that the enemy would really like to take hold of my thoughts, so please pray that I can take those captive and live for today. Please pray for healing, wisdom for my doctors and pray for our marriage as this is sometimes very difficult on it. I also need prayer for energy and physical strength as this has made me really tired and weak. As of right now we haven't told the kids anything so pray that they have understanding and little or no fear and that we have wisdom in what to say...if anything...
Thanks for your love & prayers and for reading my very long note! :)
In Him,
~Heather
***It's been awhile since I've written an update on here. First let me say sorry about my book review. It's obviously not going along like I had hoped....but, I will finish it! I'm determined! However, it will be at least another 2 weeks before I start on it. In the meantime, I'm attending the True Women Conference in Ft. Worth next week and hoping that I'll have even more to share when I get back!
Tuesday, August 17, 2010
Biblical Womanhood Chapter 1
As mentioned in my previous entry, I'm reading a book and doing a review on it. I've read this entire book already, but have been thinking about what to write for each chapter. My review of chapter one is short and sweet.
The author opens the chapter by making this assumption...wimpy theology makes wimpy women.
Wimpy theology simply does not give a woman a God that is big enough, strong enough, wise enough, and good enough to handle the realities of life in a way that magnifies the infinite worth of Jesus Christ. Wimpy theology is plagued by woman-centeredness and man-centeredness. Wimpy theology doesn't have the granite foundation of God's sovereignty or the solid steel structure of a great God-centered purpose for all things.
In the beginning of this chapter the author gave a few examples of what wimpy theology is NOT. My only complaint is that I wish he would have given a few examples of what wimpy theology actually is and what it looks like.
It is my opinion that wimpy theology is anything we do that waters down God's Word to make it fit what we want it to say. I've been in a few churches that would, sadly, fit this description. These are the kind of churches that you get one of the "feel good" sermons from and very rarely hear more than a few verses from the Bible read. This type of theology also does not challenge you to become more in Christ. This wimpy theology leads people astray...normally straight to hell...all the while they are doing their good works and deeds. I know that may sound harsh to some, but that's truly how I feel...and this is my review and my blog! LOL!
Now, how does this fit into Biblical Womanhood??? The author states this...God's ultimate purpose for the universe and for all of history and for your life is to display the glory of Christ in its highest expression, namely, in His dying to make a rebellious people His everlasting and supremely happy bride. He created us as male and female precisely so that we could display the glory of His Son.
God created male and female to display more fully the glory of His Son in relation to His blood-bought bride. Therefore, true womanhood is a distinctive calling of God to display the glory of His Son in ways that would not be displayed if there were no womanhood.
Don't buy into the ways of the world. Remember from the introduction that there are many voices calling out to us trying to get our attention? Listen to the Voice of Truth! How??? Dive into His Word. Read it, study it, learn from Him. This is NOT wimpy theology!
The author opens the chapter by making this assumption...wimpy theology makes wimpy women.
Wimpy theology simply does not give a woman a God that is big enough, strong enough, wise enough, and good enough to handle the realities of life in a way that magnifies the infinite worth of Jesus Christ. Wimpy theology is plagued by woman-centeredness and man-centeredness. Wimpy theology doesn't have the granite foundation of God's sovereignty or the solid steel structure of a great God-centered purpose for all things.
In the beginning of this chapter the author gave a few examples of what wimpy theology is NOT. My only complaint is that I wish he would have given a few examples of what wimpy theology actually is and what it looks like.
It is my opinion that wimpy theology is anything we do that waters down God's Word to make it fit what we want it to say. I've been in a few churches that would, sadly, fit this description. These are the kind of churches that you get one of the "feel good" sermons from and very rarely hear more than a few verses from the Bible read. This type of theology also does not challenge you to become more in Christ. This wimpy theology leads people astray...normally straight to hell...all the while they are doing their good works and deeds. I know that may sound harsh to some, but that's truly how I feel...and this is my review and my blog! LOL!
Now, how does this fit into Biblical Womanhood??? The author states this...God's ultimate purpose for the universe and for all of history and for your life is to display the glory of Christ in its highest expression, namely, in His dying to make a rebellious people His everlasting and supremely happy bride. He created us as male and female precisely so that we could display the glory of His Son.
God created male and female to display more fully the glory of His Son in relation to His blood-bought bride. Therefore, true womanhood is a distinctive calling of God to display the glory of His Son in ways that would not be displayed if there were no womanhood.
Don't buy into the ways of the world. Remember from the introduction that there are many voices calling out to us trying to get our attention? Listen to the Voice of Truth! How??? Dive into His Word. Read it, study it, learn from Him. This is NOT wimpy theology!
Friday, August 6, 2010
Biblical Womanhood Introduction
Biblical Womanhood Introduction:
Earlier this summer I was gifted a book from Revive Our Hearts Ministry in exchange for writing my thoughts about each chapter. The title of this book is 'Voices of the True Woman Movement~A Call to the Counter-Revolution.' Over the next few weeks I'll be sharing my thoughts on this book with all of you. I'm really excited to have this opportunity and hope that what I share leads you into a deeper realization of what a "true woman" is supposed to look like through God's eyes.
Introduction:
Most of what I'll share from the Introduction will come straight from the book. Anything that I take directly from the book will be highlighted in green.
One of the great challenges in our day is the vast number of voices vying for our attention....
So much is determined by which voices we hear and heed: our sense of who we are and why we are here; the way we relate to others; the choices we make; the way we spend our moments and years; the ultimate outcome of our lives.
Conflicting voices were an issue all the way back in the garden of Eden. The voice of God: "You are free to eat from every tree but one-if you eat from that tree, you will die." (Notice that NO choice was given here...just my 2 cents). The voice of the serpent: "you won't die-in fact, you'll become like God!" Which to listen to???
Eve was led astray by listening to the wrong voice. And she proceeded to become a voice that echoed the deception of the Serpent himself as she influenced her husband to choose to reject the voice of God.
God to Adam: Genesis 3:17 "Because you have listened to the voice of your wife and have eaten of the tree of which I commanded you, "You shall not eat of it," cursed is the ground because of you; in pain you shall eat of it all the days of your life."
I don't think it would be overstating the case to say that most if not all of the pain, dysfunction, and distress we experience in this broken world comes as a result of listening to voices that counter rather than affirm the voice of God.
The author continues to draw attention to the fact that for many years (mainly since the 1950's) voices have been calling out to women in many negative, self-absorbing ways but are packaged to be appealing and good for us. Those voices sound like this..."have it your way", You deserve it", "It's about you." These voices are heard all throughout our culture-in best selling books, magazines, commercials, movies, t.v., songs, etc. and unfortunately the vast majority of us have listened to them and fallen for their lies.
Revive Our Hearts ministry was born out of a burden that Nancy Leigh DeMoss had for women. She had a vision for "a counter-cultural revolution in which women would reject the voices of this world and incline their hearts to Christ and listen to His voice."
Out of that vision the first ever "True Woman" conference was held. The chapters in this book are each highlighting portions of that conference that took place in October, 2010.
Earlier this summer I was gifted a book from Revive Our Hearts Ministry in exchange for writing my thoughts about each chapter. The title of this book is 'Voices of the True Woman Movement~A Call to the Counter-Revolution.' Over the next few weeks I'll be sharing my thoughts on this book with all of you. I'm really excited to have this opportunity and hope that what I share leads you into a deeper realization of what a "true woman" is supposed to look like through God's eyes.
Introduction:
Most of what I'll share from the Introduction will come straight from the book. Anything that I take directly from the book will be highlighted in green.
One of the great challenges in our day is the vast number of voices vying for our attention....
So much is determined by which voices we hear and heed: our sense of who we are and why we are here; the way we relate to others; the choices we make; the way we spend our moments and years; the ultimate outcome of our lives.
Conflicting voices were an issue all the way back in the garden of Eden. The voice of God: "You are free to eat from every tree but one-if you eat from that tree, you will die." (Notice that NO choice was given here...just my 2 cents). The voice of the serpent: "you won't die-in fact, you'll become like God!" Which to listen to???
Eve was led astray by listening to the wrong voice. And she proceeded to become a voice that echoed the deception of the Serpent himself as she influenced her husband to choose to reject the voice of God.
God to Adam: Genesis 3:17 "Because you have listened to the voice of your wife and have eaten of the tree of which I commanded you, "You shall not eat of it," cursed is the ground because of you; in pain you shall eat of it all the days of your life."
I don't think it would be overstating the case to say that most if not all of the pain, dysfunction, and distress we experience in this broken world comes as a result of listening to voices that counter rather than affirm the voice of God.
The author continues to draw attention to the fact that for many years (mainly since the 1950's) voices have been calling out to women in many negative, self-absorbing ways but are packaged to be appealing and good for us. Those voices sound like this..."have it your way", You deserve it", "It's about you." These voices are heard all throughout our culture-in best selling books, magazines, commercials, movies, t.v., songs, etc. and unfortunately the vast majority of us have listened to them and fallen for their lies.
Revive Our Hearts ministry was born out of a burden that Nancy Leigh DeMoss had for women. She had a vision for "a counter-cultural revolution in which women would reject the voices of this world and incline their hearts to Christ and listen to His voice."
Out of that vision the first ever "True Woman" conference was held. The chapters in this book are each highlighting portions of that conference that took place in October, 2010.
Tuesday, July 20, 2010
I'm very happy to announce that my chemo is working! My eosinophil count is 100!!! Normal is 100-300 and mine has previously been as high as 6000 before so this is a HUGE praise! This is the lowest that my count has been in 3 years! I'm currently being weaned off my steroid meds and should be steroid free in less than one month if all stays as is. This is wonderful since the side affects of the steroids aren't very pretty. I will stay on the chemo indefinitely and I'm okay with that since it seems to be a good treatment that is working. The side effects I have from it aren't that bad...just a little bit of nausea, some loss of appetite and energy, but I'm hoping that will also level out some.
Thanks so much to those of you that have kept me lifted up in prayer. It has been a very humbling thing. I'm starting to feel much better and can only give my Lord the glory for that! This has been one of the biggest trials of my life, but I have been able to lean on Jesus in ways that I never did before. I've learned to appreciate the little things and not sweat the small stuff...but, most of all, I have a renewed urgency to serve my Lord, share His love and soak in His Truth. Going through this kind of trial has really reminded me of how short and fragile life is. The Bible verse that I've leaned on during this time has been James 1:2-4 "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." Am I mature and complete yet? No, not even close... but I have been able to come to a place where I can consider this journey that I'm on as a "joyous" one because I know that I'm exactly where He wants me to be so that He can accomplish His greater purpose! That, my friends, puts a smile on my face! :)
Thanks again for your continued prayers.
Thanks so much to those of you that have kept me lifted up in prayer. It has been a very humbling thing. I'm starting to feel much better and can only give my Lord the glory for that! This has been one of the biggest trials of my life, but I have been able to lean on Jesus in ways that I never did before. I've learned to appreciate the little things and not sweat the small stuff...but, most of all, I have a renewed urgency to serve my Lord, share His love and soak in His Truth. Going through this kind of trial has really reminded me of how short and fragile life is. The Bible verse that I've leaned on during this time has been James 1:2-4 "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." Am I mature and complete yet? No, not even close... but I have been able to come to a place where I can consider this journey that I'm on as a "joyous" one because I know that I'm exactly where He wants me to be so that He can accomplish His greater purpose! That, my friends, puts a smile on my face! :)
Thanks again for your continued prayers.
Thursday, July 1, 2010
HES update July 2010
7/1/10
I attempted to apply for SS Disability and learned yesterday that I don't qualify. I knew that I wouldn't qualify for SSD because I've been a SAHM for most of the past 15 years and don't have enough work credits in. However, I thought I might qualify for SSI. Unfortunately, my husband makes too much money and that puts us over the income bracket for SSI. The gentleman that I spoke with did say that my HES would qualify me otherwise. Medical expenses aren't figured into the equation either. I was told that I need to work four years to get all the work credits in to qualify for SSD. I'm not sure what I'll do, what I can do, or what the Lord wants me to do...BUT, I do know one thing...
"My God shall supply all my needs according to His glorious riches in Jesus Christ!" Phil. 4:19
In other news, I found out that nothing is wrong with my back/upper leg bones. That is a huge praise since the medicine that I've been on can cause bone loss. The doctor that I saw told me that people that have autoimmune disorder sometimes have pain in the exact location that I'm having it. He said it's probably just inflammation and there's nothing they can do for that other than give me steroid shots directly into it. I could take anti-inflammatory meds, but with my disorder I can't take those or they'll cause more damage to my stomach. I opted not to get the shot for now, but can go get one anytime I need it.
7/6/10
I had another appt. with my Hemotologist today. My blood counts are off a little bit. She said that we'd wait another month and check them again then. I'm really not sure what she meant. I do know that my Red count was extrememly low and my white count is apparantly not what she'd like it to be. I wish I was a doctor so I had more understanding...or do I? At least I know that the Great Physician is my Father. :)
I attempted to apply for SS Disability and learned yesterday that I don't qualify. I knew that I wouldn't qualify for SSD because I've been a SAHM for most of the past 15 years and don't have enough work credits in. However, I thought I might qualify for SSI. Unfortunately, my husband makes too much money and that puts us over the income bracket for SSI. The gentleman that I spoke with did say that my HES would qualify me otherwise. Medical expenses aren't figured into the equation either. I was told that I need to work four years to get all the work credits in to qualify for SSD. I'm not sure what I'll do, what I can do, or what the Lord wants me to do...BUT, I do know one thing...
"My God shall supply all my needs according to His glorious riches in Jesus Christ!" Phil. 4:19
In other news, I found out that nothing is wrong with my back/upper leg bones. That is a huge praise since the medicine that I've been on can cause bone loss. The doctor that I saw told me that people that have autoimmune disorder sometimes have pain in the exact location that I'm having it. He said it's probably just inflammation and there's nothing they can do for that other than give me steroid shots directly into it. I could take anti-inflammatory meds, but with my disorder I can't take those or they'll cause more damage to my stomach. I opted not to get the shot for now, but can go get one anytime I need it.
7/6/10
I had another appt. with my Hemotologist today. My blood counts are off a little bit. She said that we'd wait another month and check them again then. I'm really not sure what she meant. I do know that my Red count was extrememly low and my white count is apparantly not what she'd like it to be. I wish I was a doctor so I had more understanding...or do I? At least I know that the Great Physician is my Father. :)
Subscribe to:
Posts (Atom)