First of all, let me apologize for not writing for such a long time, the last several months have been crazy and challenging for me and my family. Lots of seizures, trying to increase my meds once again - that was another failed attempt and just the overall challenge of daily life with handicaps - has kept me away from blogging! I will try to do a better job :)
Tomorrow will mark the date of the 26th anniversary of my very first seizure. It is hard to believe that I have been doing this for so long. 26 years of seizures, medicines - most of them doing little to nothing - and 26 years of emotional challenges in dealing with the magnitude of my circumstances.
Life is hard, that is just a very simple fact. Sometimes it does nothing less than chew you up and spit you out. That is definitely what the last year has felt like for our family.
But then there is God...
God is there to remind me that He has never left me and never will. He is holding me in the very palm of His mighty hand. He has a plan and purpose for me that I cannot even fathom. He is the Author and Finisher of my faith - the Anchor of my soul, my Redeemer God and Friend!
So, as I sit here in my wheelchair contemplating these long years of battle with epilepsy; all that really comes to mind is how blessed I am.
Blessed...
to be loved by the man of my dreams. He was with me for that first seizure in 1985 and he has been here ever since! If seeing your girlfriend have a grand mal seizure after only 9 months of dating doesn't run you off, I guess nothing will! I love my Stephen and we both know that it was God who brought us together and God who continues to fan the flame of our almost 27 year romance.
Blessed...
to have been given the incredible gift of being Josh's mom. Against all odds, I had a wonderful pregnancy and a healthy baby. God is good! That baby is now 14 years old and such a handsome young man. He is growing in the Lord and learning the things in life that are truly important. He is our joy and the light of our lives.
Blessed...
to know my Jesus and the power of His Word. So thankful am I to have learned the tough lessons in life and the importance of clinging to them through the storms that come my way. One of them being, walking, is not the most important thing in life - trusting God while coming to know this is. The other being that God will use the weakest of people for His glory - seizures, wheelchair and all. I am humbled at this realization.
So, here I am again, staring July 21st in the face - with all the memories of that first seizure as well as all the years following but, today I can honestly say I am a blessed woman indeed. So undeserving of the grace that my Lord so richly pours over me each day. Praising Him that it IS sufficient for all my needs.
Rejoicing in Hope,
Roxanne
"I will love You O, Lord, my strength." Psalm 18:1
Wednesday, July 20, 2011
Tuesday, May 31, 2011
Precious Warriors
Almost a year ago I became part of a prayer team for C.O.L.E.'s foundation. This is a wonderful organization that is dedicated to supporting families who have a child with cancer and many other life threatening diseases. My friend, Sandy had been working with COLE's for some time and she mentioned it often. I went to their website to take a look for myself. I immediately fell in love with the kids that are fighting so hard to live.
I guess one reason my heart is so knit to these brave kids is that I am a "professional patient" myself. I have never had cancer and I can't even imagine the pain, sorrow and grief these wonderful families go through. But I am riding my own roller coaster each day and know the heartache of chronic illness. Cancer has touched our family too many times already and I can testify to the battle that this awful "monster" brings.
It has been my great joy and honor to follow the journey's of these angels and to lift them before the Father each day. I have lost 8 of my kids since July of last year and my heart bleeds for their families who are left behind to pick up the pieces. I have several who have been overjoyed to report NED (no evidence of disease) and just the other day one of my angels found out that she is cancer free - two of the sweetest words that she and her family have probably ever heard! Glory to God! And then there are two of my sweethearts who have relapsed yet again and the doctor's have little hope. It is gut wrenching and my heart literally aches when I read the agony and sorrow their families are facing from moment to moment.
And then there is Laken, she is my precious little six year old who has a battle very much like mine. Her mother found her having a seizure last August and she has been battling ever since. Reading her story is like taking a page from my own life - and in her case I KNOW the uphill struggle of daily seizures and all that comes with it. Laken is really having a hard time right now but I am praying for many, many seizure free days for her in the future.
Kids with cancer are fighters - they are in the fight of their lives - a fight they never thought would be. Please join me in bringing these precious warriors before our mighty God each day - there are way too many kids losing their hair, going through chemo and waiting, just waiting to hear those wonderful words, cancer free. They need us to pray and take on some of the burden they are carrying every day.
This is in honor of all my kids - I love you and am praying for you! Please trun down the playlist music to listen. "Skin", by Rascal Flatts
Rejoicing in Hope,
Roxanne
I guess one reason my heart is so knit to these brave kids is that I am a "professional patient" myself. I have never had cancer and I can't even imagine the pain, sorrow and grief these wonderful families go through. But I am riding my own roller coaster each day and know the heartache of chronic illness. Cancer has touched our family too many times already and I can testify to the battle that this awful "monster" brings.
It has been my great joy and honor to follow the journey's of these angels and to lift them before the Father each day. I have lost 8 of my kids since July of last year and my heart bleeds for their families who are left behind to pick up the pieces. I have several who have been overjoyed to report NED (no evidence of disease) and just the other day one of my angels found out that she is cancer free - two of the sweetest words that she and her family have probably ever heard! Glory to God! And then there are two of my sweethearts who have relapsed yet again and the doctor's have little hope. It is gut wrenching and my heart literally aches when I read the agony and sorrow their families are facing from moment to moment.
And then there is Laken, she is my precious little six year old who has a battle very much like mine. Her mother found her having a seizure last August and she has been battling ever since. Reading her story is like taking a page from my own life - and in her case I KNOW the uphill struggle of daily seizures and all that comes with it. Laken is really having a hard time right now but I am praying for many, many seizure free days for her in the future.
Kids with cancer are fighters - they are in the fight of their lives - a fight they never thought would be. Please join me in bringing these precious warriors before our mighty God each day - there are way too many kids losing their hair, going through chemo and waiting, just waiting to hear those wonderful words, cancer free. They need us to pray and take on some of the burden they are carrying every day.
This is in honor of all my kids - I love you and am praying for you! Please trun down the playlist music to listen. "Skin", by Rascal Flatts
Rejoicing in Hope,
Roxanne
Tuesday, April 26, 2011
Tragedy, Miracles and Mercy
The month of April is one our family will not soon forget. It has been one of those times when we have felt like we have all been put into a giant blender and swirled around at warp speed.
The very early morning of April 6th started with a phone call that shook us to our core. Our nephew, Stephen (he is my husband, Stephen's oldest sister's son - we have several Stephen's in our family)had been in a horrible car accident, had a crushed skull and was on a ventilator. All information at that time was very sketchy and limited - we were terrified. The next several moments are all still a blur as we jumped into our clothes, made phone calls and prayed for Stephen to have strength to hold on.
As we arrived at the hospital we learned that the driver of the car Stephen was in died on the scene. She and Stephen had been friends for 10 years and she was just 30 minutes shy of her 20th birthday. There were two other passengers in the car as well, one was very blessed to walk away with only bruises and scrapes, the other is still clinging to life with not much hope of survival.
Stephen was in the hospital for 8 days. While he was there, he had two surgeries and improved day by day which amazed and delighted us all. He is home now and still improving - he has a long way to go with still another surgery in the near future and lots of emotional healing that the Lord will need to carry him through, but he is a miracle of God that cannot be denied. The timing and plans of the Lord are truly something in which to marvel. We were told that if the driver had turned a little bit more to one side, Stephen probably would not have survived. God is so very good, we praise Him for the mercy He has shown to Stephen, his mom and dad, Steve and Terrie - and to our whole family for allowing him to have a chance to live and allowing all of us to witness this miracle.
With our heads still spinning from Stephen's accident, we received another early morning phone call that brought us to our knees. My Uncle Billy was in his final hours and we needed to come and see him for the last time. This was such a tough day for us all, he had requested not to be at home when his time came so he was moved that day to a hospice facility - we were told he would probably not make it there.
Again, the timing of God is so perfect and such a mystery at the same time. He did make it that day and held on for another exhausting and painful two weeks. But, God in His mercy decided Easter morning would be the best time to call Uncle Billy home. Having Easter brunch with the Risen King, I can hardly imagine the joy! We are rejoicing that he is being held in the Arms of Jesus, never to suffer again, but, still our hearts are heavy with sorrow - we will miss him so much.
As I look back over the past month, my heart is full of so many things - shock, sorrow, relief, joy, grief and hope. My heart bleeds for Stephen's young friend who lost her life in the accident - such a tragedy. My heart is overjoyed to see our nephew walking around again and talking about plans for the future - a miracle that we will not soon forget. My heart also aches over the loss of Uncle Billy and the unbelievable sorrow my Aunt Marie and my cousins, Gina and Leanne are experiencing - I can only imagine.
But amidst all of the hurt, there is also hope. A hope that can only come from the Lord and having unshakable faith in Him. He is a God of mercy and He has shown that to our family in so many ways over the past month - again, something we will not soon forget. Thank You, my precious Jesus for being my Rock and constant Source of Strength - I will forever praise and glorify Your Name, especially in the tragedies, miracles and mercies of this life.
Rejoicing in Hope,
Roxanne
"God is our refuge and strength, an ever present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though the waters roar and foam and the mountains quake with their surging. The Lord Almighty is with us; the God of Jacob is our fortress." Psalm 46:1-2,7
The very early morning of April 6th started with a phone call that shook us to our core. Our nephew, Stephen (he is my husband, Stephen's oldest sister's son - we have several Stephen's in our family)had been in a horrible car accident, had a crushed skull and was on a ventilator. All information at that time was very sketchy and limited - we were terrified. The next several moments are all still a blur as we jumped into our clothes, made phone calls and prayed for Stephen to have strength to hold on.
As we arrived at the hospital we learned that the driver of the car Stephen was in died on the scene. She and Stephen had been friends for 10 years and she was just 30 minutes shy of her 20th birthday. There were two other passengers in the car as well, one was very blessed to walk away with only bruises and scrapes, the other is still clinging to life with not much hope of survival.
Stephen was in the hospital for 8 days. While he was there, he had two surgeries and improved day by day which amazed and delighted us all. He is home now and still improving - he has a long way to go with still another surgery in the near future and lots of emotional healing that the Lord will need to carry him through, but he is a miracle of God that cannot be denied. The timing and plans of the Lord are truly something in which to marvel. We were told that if the driver had turned a little bit more to one side, Stephen probably would not have survived. God is so very good, we praise Him for the mercy He has shown to Stephen, his mom and dad, Steve and Terrie - and to our whole family for allowing him to have a chance to live and allowing all of us to witness this miracle.
With our heads still spinning from Stephen's accident, we received another early morning phone call that brought us to our knees. My Uncle Billy was in his final hours and we needed to come and see him for the last time. This was such a tough day for us all, he had requested not to be at home when his time came so he was moved that day to a hospice facility - we were told he would probably not make it there.
Again, the timing of God is so perfect and such a mystery at the same time. He did make it that day and held on for another exhausting and painful two weeks. But, God in His mercy decided Easter morning would be the best time to call Uncle Billy home. Having Easter brunch with the Risen King, I can hardly imagine the joy! We are rejoicing that he is being held in the Arms of Jesus, never to suffer again, but, still our hearts are heavy with sorrow - we will miss him so much.
As I look back over the past month, my heart is full of so many things - shock, sorrow, relief, joy, grief and hope. My heart bleeds for Stephen's young friend who lost her life in the accident - such a tragedy. My heart is overjoyed to see our nephew walking around again and talking about plans for the future - a miracle that we will not soon forget. My heart also aches over the loss of Uncle Billy and the unbelievable sorrow my Aunt Marie and my cousins, Gina and Leanne are experiencing - I can only imagine.
But amidst all of the hurt, there is also hope. A hope that can only come from the Lord and having unshakable faith in Him. He is a God of mercy and He has shown that to our family in so many ways over the past month - again, something we will not soon forget. Thank You, my precious Jesus for being my Rock and constant Source of Strength - I will forever praise and glorify Your Name, especially in the tragedies, miracles and mercies of this life.
Rejoicing in Hope,
Roxanne
"God is our refuge and strength, an ever present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though the waters roar and foam and the mountains quake with their surging. The Lord Almighty is with us; the God of Jacob is our fortress." Psalm 46:1-2,7
Friday, April 1, 2011
Times Like These
Last Sunday I had the opportunity to spend some time with my family. It was a heartbreaking experience that I would give anything to change. My Uncle Billy, he is my daddy's brother, has been in the fight of his life for some time now. He is battling oral cancer. He is now under hospice care and declining very quickly.
As I have mentioned before, I come from a very close-knit Italian family and there is just no other way to say it, we are broken -hearted. He has been fighting long and hard and to be quite honest, we are a little shocked. As of just a couple of months ago we really thought there was hope and the doctor's had even been optimistic. It amazes me how fast things change.
It has not even been a year since Maw-Maw passed away and here we are again. My heart just bleeds for my Aunt Marie and my cousins, Gina and Leanne. I cannot imagine the hurt they are going through.
Over the past week I have thought a lot about how life just seems to chew you up and spit you out sometimes - that is how my family is feeling at this moment. Life is hard. I have asked the Lord many times this week to help me to understand. Of course, I know that some things are just too big for our little minds to grasp - this is definitely one of those things.
I have been missing Maw-Maw more and more through all of this - I know hurt just magnifies grief and that is what I am feeling right now. As I am writing this, hot tears are streaming down my face onto the keyboard - tears over the loss i feel for Maw-Maw and the hurt my precious family is enduring over Uncle Billy.
However, although my heart is breaking for my family, I choose to trust my God. I know He has a plan and purpose for all things - even those that hurt the most. I will praise Him and exalt His Name and remember He is holding my family in the palm of His Hand and I know if we let Him, He will work mightily through the hurt we are all feeling.
Life is so very hard but God is always so very good. Trusting Him all the more, in times like these.
Rejoicing in Hope,
Roxanne
"The Lord is close to the brokenhearted and saves those who are crushed in spirit." Psalm 34:18
As I have mentioned before, I come from a very close-knit Italian family and there is just no other way to say it, we are broken -hearted. He has been fighting long and hard and to be quite honest, we are a little shocked. As of just a couple of months ago we really thought there was hope and the doctor's had even been optimistic. It amazes me how fast things change.
It has not even been a year since Maw-Maw passed away and here we are again. My heart just bleeds for my Aunt Marie and my cousins, Gina and Leanne. I cannot imagine the hurt they are going through.
Over the past week I have thought a lot about how life just seems to chew you up and spit you out sometimes - that is how my family is feeling at this moment. Life is hard. I have asked the Lord many times this week to help me to understand. Of course, I know that some things are just too big for our little minds to grasp - this is definitely one of those things.
I have been missing Maw-Maw more and more through all of this - I know hurt just magnifies grief and that is what I am feeling right now. As I am writing this, hot tears are streaming down my face onto the keyboard - tears over the loss i feel for Maw-Maw and the hurt my precious family is enduring over Uncle Billy.
However, although my heart is breaking for my family, I choose to trust my God. I know He has a plan and purpose for all things - even those that hurt the most. I will praise Him and exalt His Name and remember He is holding my family in the palm of His Hand and I know if we let Him, He will work mightily through the hurt we are all feeling.
Life is so very hard but God is always so very good. Trusting Him all the more, in times like these.
Rejoicing in Hope,
Roxanne
"The Lord is close to the brokenhearted and saves those who are crushed in spirit." Psalm 34:18
Friday, March 25, 2011
I'm Right Where I Need To Be
Today marks the second anniversary in my wheelchair full time. I will never forget two years ago siting at my kitchen table, Bible open and tears streaming down, thinking this was just so much more than I could handle. And I was right. Every day since then has been a surrendering that has led me right to the foot of the Cross and Jesus has carried me all the way.
Some days are still hard, I think that may always be the case - life in a wheelchair is never easy. But God continues to listen as I pray and my two biggest prayer requests over the last two years have been that I am kept safe - and Glory to God I have had fewer falls in these last couple of years and we are all so thankful for that. My next prayer request is that the Lord would enable me to embrace this new normal.
It has been difficult and I must say, I have fought the Lord from time to time, but He has been faithful to help me not just embrace life in a wheelchair, but to also be thankful for it.
That's right, you heard it here first - I am very thankful for this chair. It has allowed me to depend on my Lord in so many ways, it has made me more compassionate, it has challenged my faith and it has helped me to see that our sufferings are tools in which the Lord uses to make us more like Him. These things are forever written on my heart and I have daily seizures and a chair with wheels to thank for it.
The Lord has amazed me at how He has used my seizures and this wheelchair to bring glory to Him as well as reach out to hurting people around me - that, I have to say it my greatest joy. I am honored to pray for those who suffer, to be a witness to the grace and faithfulness of my God. It has allowed me to become so very small so that He can become so very big - if this is what it takes, count me in, I am all the more blessed.
So, today as I sit at my kitchen table with my Bible open, there are no tears, just the joy of Jesus because I am right where I need to be - thank You Lord!
Rejoicing in Hope,
Roxanne
"No, in all these things we are more than conquerors through Him that loved us." Romans 8:37
Some days are still hard, I think that may always be the case - life in a wheelchair is never easy. But God continues to listen as I pray and my two biggest prayer requests over the last two years have been that I am kept safe - and Glory to God I have had fewer falls in these last couple of years and we are all so thankful for that. My next prayer request is that the Lord would enable me to embrace this new normal.
It has been difficult and I must say, I have fought the Lord from time to time, but He has been faithful to help me not just embrace life in a wheelchair, but to also be thankful for it.
That's right, you heard it here first - I am very thankful for this chair. It has allowed me to depend on my Lord in so many ways, it has made me more compassionate, it has challenged my faith and it has helped me to see that our sufferings are tools in which the Lord uses to make us more like Him. These things are forever written on my heart and I have daily seizures and a chair with wheels to thank for it.
The Lord has amazed me at how He has used my seizures and this wheelchair to bring glory to Him as well as reach out to hurting people around me - that, I have to say it my greatest joy. I am honored to pray for those who suffer, to be a witness to the grace and faithfulness of my God. It has allowed me to become so very small so that He can become so very big - if this is what it takes, count me in, I am all the more blessed.
So, today as I sit at my kitchen table with my Bible open, there are no tears, just the joy of Jesus because I am right where I need to be - thank You Lord!
Rejoicing in Hope,
Roxanne
"No, in all these things we are more than conquerors through Him that loved us." Romans 8:37
Friday, March 18, 2011
Here I am ... Again
The first week of my next medication has been interesting, to say the least. The first day proved to be a challenge right from the start. The side effects rushed in at tidal wave force; dizziness, nausea and "jitters" that made my insides feel like they were shaking out of control. My doctor suggested that I reduce the dose and that is I have done. It has helped and I am feeling better.
So, here I am again, waiting. Waiting to see if I will tolerate it or not. I have been in this place so many times that I have lost count. It is never easy and I don't think I will ever get used to it. It is a lot like waiting at the starting line of a race. You know the gun is supposed to go off but but there is a problem - so you wait. That is where I am now; waiting for something to happen with no sound of the gun in sight.
I would not be truthful if I said I was not discouraged and I always want to be truthful in this amazing place God has given me to share my life and feelings. I never want anyone to think that I don't have bad days and I always have a song in my heart over the suffering in my life. That would be very far from the truth - the fact is every day is hard. But I have learned that our days are made up of choices and I have chosen to praise God in my trials - that is where my heart is, giving Him the glory and honor, and I will fight to honor my God in everything that comes my way - even if the circumstances are not my favorites.
So, I am discouraged. It is tough to go through medicine after medicine with no results and even more than that, it is tough to never see the results that might be because of the side effects that seem to plague me at every turn. But even in my discouragement, I will wait on the Lord because I know He is working and my suffering is teaching me great things.
There may never be a medication that controls my seizures or one that I take without side effects. I may have to deal with this for the rest of my life. But there is a God and He knows my name (and yours too) and His purpose is far greater than any healing or medicine could ever be.
So, I will wait on His timing and not my own. I will wait for the Lord to teach me all He thinks I need to know. And I will trust Him more and more through the process. And maybe, just maybe, I will hear the sound of that starter gun very soon - but if not that is okay too.
Rejoicing in Hope,
Roxanne
"But those that hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31
So, here I am again, waiting. Waiting to see if I will tolerate it or not. I have been in this place so many times that I have lost count. It is never easy and I don't think I will ever get used to it. It is a lot like waiting at the starting line of a race. You know the gun is supposed to go off but but there is a problem - so you wait. That is where I am now; waiting for something to happen with no sound of the gun in sight.
I would not be truthful if I said I was not discouraged and I always want to be truthful in this amazing place God has given me to share my life and feelings. I never want anyone to think that I don't have bad days and I always have a song in my heart over the suffering in my life. That would be very far from the truth - the fact is every day is hard. But I have learned that our days are made up of choices and I have chosen to praise God in my trials - that is where my heart is, giving Him the glory and honor, and I will fight to honor my God in everything that comes my way - even if the circumstances are not my favorites.
So, I am discouraged. It is tough to go through medicine after medicine with no results and even more than that, it is tough to never see the results that might be because of the side effects that seem to plague me at every turn. But even in my discouragement, I will wait on the Lord because I know He is working and my suffering is teaching me great things.
There may never be a medication that controls my seizures or one that I take without side effects. I may have to deal with this for the rest of my life. But there is a God and He knows my name (and yours too) and His purpose is far greater than any healing or medicine could ever be.
So, I will wait on His timing and not my own. I will wait for the Lord to teach me all He thinks I need to know. And I will trust Him more and more through the process. And maybe, just maybe, I will hear the sound of that starter gun very soon - but if not that is okay too.
Rejoicing in Hope,
Roxanne
"But those that hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31
Saturday, March 12, 2011
The Next Chapter
As of Monday I will be starting a new chapter of my journey with epilepsy. I will start another medicine along with the Tegretol I am currently taking. I have taken this one before - I have been on them all. We are re-visiting all my old meds with hopes that trying them for the second (or third) time may yield good results.
I have to admit I am a little nervous about this one. It is called Felbatol and it has many risks and severe side effects that I remember well from the last time I took it. The pharmacy even has to special order it because they do not carry it - not enough people taking it. There has been a small percent of people who have died from taking Felbatol and although it is rare, it is still a little nerve wracking knowing you are taking a drug that has killed some people.
Some of the other side effects of the drug are: extreme insomnia, appetite loss in a big, big way, vomiting, and blood toxicity. Believe it or not I am leaving out the really bad ones. The last time I was on this (about 10 years ago) I had a horrible time. I have vivid memories of not sleeping for 2 or 3 days at a time and lots of vomiting. Felbatol is a last resort kind of drug and is only given to those who have severe epilepsy. I was willing to try it again for two reasons. One being if I am willing to try others that have negative side effects, I must also be willing to try this. And two,we are desperate for something to work. Right now I have between 80-100 seizures a month - sometimes more. That is just too many and we want to keep trying to see if something will finally work.
So once again, here I am, standing at the crossroads of yet another medicine. On one hand I am very thankful to have something else to try - risks and all. On the other hand I must gear up for what is ahead, very extreme side effects and being hopeful without expectation. That is a lot like walking on a tightrope.
Praise God I am not walking alone. I am safe in the Arms of King Jesus, knowing that He is sovereign and always one step ahead of me. I take such comfort in that fact and I thank God for reminding me of His presence from moment to moment. I am standing on two Scriptures as I face this next chapter:
"Be still and know that I am God. I will be exalted among the nations, I will be exalted in the earth." Psalm 46:10
AND...
"And the angel of the Lord appeared to him, and said to him, The Lord is with you mighty warrior." Judges 6:12
I want to take this time to be very still before my God so that He may teach me and lead me in His way and not my own. I pray with each passing day I will grow more invisible so that He alone may shine. I have also realized over the last year, I am in a war. I don't just mean a war for my health but a war in how I might respond when things aren't the best or how I think they should be. And a war to allow Jesus to be seen in me even on my worst days. So, I am blessed to know that through the power of the Lord I can be a mighty warrior and shine for Him, especially in the dark times.
The big fight begins on Monday and I covet your prayers for me. I have left out quite a few things about this drug as not to dwell on them. I am praying for strength and asking you to do the same. God is so good to me and has given me an incredibly strong support system - I know I will be using them a lot in the coming days.
This is one of my favorite quotes from Hannah Witall Smith,
"No action can touch us except with the Father's knowledge and by His permission... by the time it reaches us it has become His will for us, and must be accepted as directly from His hands."
Such truth. I will focus on that in the coming weeks and months.
Rejoicing in Hope,
Roxanne
I have to admit I am a little nervous about this one. It is called Felbatol and it has many risks and severe side effects that I remember well from the last time I took it. The pharmacy even has to special order it because they do not carry it - not enough people taking it. There has been a small percent of people who have died from taking Felbatol and although it is rare, it is still a little nerve wracking knowing you are taking a drug that has killed some people.
Some of the other side effects of the drug are: extreme insomnia, appetite loss in a big, big way, vomiting, and blood toxicity. Believe it or not I am leaving out the really bad ones. The last time I was on this (about 10 years ago) I had a horrible time. I have vivid memories of not sleeping for 2 or 3 days at a time and lots of vomiting. Felbatol is a last resort kind of drug and is only given to those who have severe epilepsy. I was willing to try it again for two reasons. One being if I am willing to try others that have negative side effects, I must also be willing to try this. And two,we are desperate for something to work. Right now I have between 80-100 seizures a month - sometimes more. That is just too many and we want to keep trying to see if something will finally work.
So once again, here I am, standing at the crossroads of yet another medicine. On one hand I am very thankful to have something else to try - risks and all. On the other hand I must gear up for what is ahead, very extreme side effects and being hopeful without expectation. That is a lot like walking on a tightrope.
Praise God I am not walking alone. I am safe in the Arms of King Jesus, knowing that He is sovereign and always one step ahead of me. I take such comfort in that fact and I thank God for reminding me of His presence from moment to moment. I am standing on two Scriptures as I face this next chapter:
"Be still and know that I am God. I will be exalted among the nations, I will be exalted in the earth." Psalm 46:10
AND...
"And the angel of the Lord appeared to him, and said to him, The Lord is with you mighty warrior." Judges 6:12
I want to take this time to be very still before my God so that He may teach me and lead me in His way and not my own. I pray with each passing day I will grow more invisible so that He alone may shine. I have also realized over the last year, I am in a war. I don't just mean a war for my health but a war in how I might respond when things aren't the best or how I think they should be. And a war to allow Jesus to be seen in me even on my worst days. So, I am blessed to know that through the power of the Lord I can be a mighty warrior and shine for Him, especially in the dark times.
The big fight begins on Monday and I covet your prayers for me. I have left out quite a few things about this drug as not to dwell on them. I am praying for strength and asking you to do the same. God is so good to me and has given me an incredibly strong support system - I know I will be using them a lot in the coming days.
This is one of my favorite quotes from Hannah Witall Smith,
"No action can touch us except with the Father's knowledge and by His permission... by the time it reaches us it has become His will for us, and must be accepted as directly from His hands."
Such truth. I will focus on that in the coming weeks and months.
Rejoicing in Hope,
Roxanne
Friday, February 25, 2011
Count It All Joy
Last week someone told me that I needed revelation knowledge on God's healing power and that Jesus died so I would not have to suffer - all I need to do is just reach out and take the healing. This is not the first time I have been told things like this, 43 years of disability and physical suffering have brought about many comments like this. I know that there are many well meaning people who believe we have the right to be totally healed and problem free, if you have been following my blog for anytime at all you know that I disagree. I disagree on the basis of God's Word and not my own opinion - that is what I want to share here today.
It saddens me to know that some Christians have twisted God's Word and have fallen victim to the lies of Satan on the issue of hardship and suffering in our lives. Many people spend so much of their lives running from the hurt that can draw them closer to the Lord, instead of embracing it and allowing the power of God to work through them and the painful circumstances in ways only God can. The Word of God is very clear on the subject of trials in our lives.
"In this world, you will have tribulations..." John 16:33
Jesus was crystal clear when He spoke these words so long ago. It is not, if, but when we go through tribulations. We live in a fallen world where sin runs rampant and hard times exist due to the sin that was brought to us in the Garden by Adam and Eve. Because of that sin, we will never be trouble free until we see Jesus face to face in Heaven. Again, it is not if, it is when.
"But after you have suffered a while, the Lord will perfect, establish, strengthen and settle you." 1 Peter 5:10
"When you pass through the waters, I will be with you. And through the rivers, they shall not over flow you. When you walk through the fire, you shall not be burned, nor shall the flame scorch you." Isaiah 43:2
You will also find that some are of the mindset that it is not God's will for anyone to suffer physically - that is just not the case and Scripture again proves that point of view incorrect. We are to seek after God's will and not our own in ALL areas of our life - it is not about what is pleasing to us but rather what brings the Father glory. As Christ-followers, it is our responsibility to follow the Lord and not try and lead - again it is about His will.
"The Truth is, it's not about you. It's not about me. It's all about Him. The Truth may not change your circumstances - at least not here and now- but it will change you."- Nancy Leigh DeMoss
There is often pain, and discomfort in the things God allows but we must remember that there is always purpose and God never wastes anything He does - it is for our good and His glory. The Bible is quick to point out that instead of pushing our suffering away, we are to look for God's plan and allow our responses to the pain reflect Jesus.
"My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing." James 1:2-4
I am more concerned with my response to my circumstances than I am getting them out of my life. I pray every day that I will react with joy, grace and in the strength of Almighty God. I know that nothing happens in my life- or in yours- that is not first filtered through His hand - I will rely on Him more because I know He knows best. Life is not about getting my own way or doing what I think is best. God has allowed the suffering in my life for a very specific reason - I don't understand it all but, I will not push it away trying to lean on myself or have what I think is best - I am not God, I am His servant and I will trust Him more through the hard times He has allowed. In doing so, I know that the pain can never compare to what He is teaching me every day.
"Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction is but for a moment and is working for us a far more exceeding weight of glory, while we do not look at the things which are seen but at the things which are not seen. For the things which are seen are temporary and the things which are not seen are eternal." 1 Cor. 4:16-18
I don't know about you but I would much rather have my eyes focused on eternal things than the fading, passing things that this world has to offer. I know in my own battle with suffering, the Lord has taught me more about trusting Him, being joyful in hope, being filled with His Spirit - especially in the darkest of times, you can't learn these truths if times are always good. After all, if things were always going our way, why would we need God at all? The truth is we need to be desperate for Him, we need to lean on Him with all we have - knowing we can never do it alone.
"My flesh and heart fail but God is the strength of my heart and my portion forever." Psalm 73:26
One final word, it is like pouring salt into an already open and sore wound of someone who is hurting to hear things, like the comments shared with me last week. Even though it may come with the best of intentions, be diligent to choose your words carefully. Be sensitive, compassionate and loving. Your words and my words always matter and once they are spoken, we will never have the opportunity to take them back.
I have said this many times but I will say it again today. I would rather have 100 seizures a day, be confined to my wheelchair for the rest of my life and knowing my God, than healthy, seizure free and on my feet without Him. I would not trade the truths that God has taught me in the fire for anything this world has to offer.
Rejoicing in Hope,
Roxanne
" Jesus said, My grace is sufficient for you. My strength is made perfect in weakness. Therefore most gladly I would rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong." 2 Cor 12:9-10
"And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character, and character, hope." Romans 5:3-4
It saddens me to know that some Christians have twisted God's Word and have fallen victim to the lies of Satan on the issue of hardship and suffering in our lives. Many people spend so much of their lives running from the hurt that can draw them closer to the Lord, instead of embracing it and allowing the power of God to work through them and the painful circumstances in ways only God can. The Word of God is very clear on the subject of trials in our lives.
"In this world, you will have tribulations..." John 16:33
Jesus was crystal clear when He spoke these words so long ago. It is not, if, but when we go through tribulations. We live in a fallen world where sin runs rampant and hard times exist due to the sin that was brought to us in the Garden by Adam and Eve. Because of that sin, we will never be trouble free until we see Jesus face to face in Heaven. Again, it is not if, it is when.
"But after you have suffered a while, the Lord will perfect, establish, strengthen and settle you." 1 Peter 5:10
"When you pass through the waters, I will be with you. And through the rivers, they shall not over flow you. When you walk through the fire, you shall not be burned, nor shall the flame scorch you." Isaiah 43:2
You will also find that some are of the mindset that it is not God's will for anyone to suffer physically - that is just not the case and Scripture again proves that point of view incorrect. We are to seek after God's will and not our own in ALL areas of our life - it is not about what is pleasing to us but rather what brings the Father glory. As Christ-followers, it is our responsibility to follow the Lord and not try and lead - again it is about His will.
"The Truth is, it's not about you. It's not about me. It's all about Him. The Truth may not change your circumstances - at least not here and now- but it will change you."- Nancy Leigh DeMoss
There is often pain, and discomfort in the things God allows but we must remember that there is always purpose and God never wastes anything He does - it is for our good and His glory. The Bible is quick to point out that instead of pushing our suffering away, we are to look for God's plan and allow our responses to the pain reflect Jesus.
"My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing." James 1:2-4
I am more concerned with my response to my circumstances than I am getting them out of my life. I pray every day that I will react with joy, grace and in the strength of Almighty God. I know that nothing happens in my life- or in yours- that is not first filtered through His hand - I will rely on Him more because I know He knows best. Life is not about getting my own way or doing what I think is best. God has allowed the suffering in my life for a very specific reason - I don't understand it all but, I will not push it away trying to lean on myself or have what I think is best - I am not God, I am His servant and I will trust Him more through the hard times He has allowed. In doing so, I know that the pain can never compare to what He is teaching me every day.
"Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction is but for a moment and is working for us a far more exceeding weight of glory, while we do not look at the things which are seen but at the things which are not seen. For the things which are seen are temporary and the things which are not seen are eternal." 1 Cor. 4:16-18
I don't know about you but I would much rather have my eyes focused on eternal things than the fading, passing things that this world has to offer. I know in my own battle with suffering, the Lord has taught me more about trusting Him, being joyful in hope, being filled with His Spirit - especially in the darkest of times, you can't learn these truths if times are always good. After all, if things were always going our way, why would we need God at all? The truth is we need to be desperate for Him, we need to lean on Him with all we have - knowing we can never do it alone.
"My flesh and heart fail but God is the strength of my heart and my portion forever." Psalm 73:26
One final word, it is like pouring salt into an already open and sore wound of someone who is hurting to hear things, like the comments shared with me last week. Even though it may come with the best of intentions, be diligent to choose your words carefully. Be sensitive, compassionate and loving. Your words and my words always matter and once they are spoken, we will never have the opportunity to take them back.
I have said this many times but I will say it again today. I would rather have 100 seizures a day, be confined to my wheelchair for the rest of my life and knowing my God, than healthy, seizure free and on my feet without Him. I would not trade the truths that God has taught me in the fire for anything this world has to offer.
Rejoicing in Hope,
Roxanne
" Jesus said, My grace is sufficient for you. My strength is made perfect in weakness. Therefore most gladly I would rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong." 2 Cor 12:9-10
"And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character, and character, hope." Romans 5:3-4
Friday, February 11, 2011
Lifter of My Head
"But You, O Lord, are a shield for me. My glory and the One who lifts up my head. I cried to the Lord with my voice and He heard me from His holy hill." Psalm 3:3-4
This has been one of my favorite verses for a while now, one I go to on the days that I don't think I am going to make it. I have had well over a week's worth of those days lately. Last Thursday I went to the doctor with what I thought was going to be a pressure sore and as it turned out I have shingles for the second time. A couple of days later I also came down with a very severe UTI (urinary tract infection) - all the while still juggling the endless supply of seizures that come my way. I have been in so much pain that it has been hard for me to sit up for long periods of time. Needless to say, I have not had an easy time over the past week.
So, as I have done for some time now I have gone to my verse in Psalm 3. It is such a comfort to know that God is the lifter of my head. No matter the situation, whether it is sickness, despair, weariness or discouragement; the Mighty God of the Universe will lift up our heads in times when we cannot lift them ourselves. I don't know about you but this gives me great hope. There are so many days that I can't see beyond my own circumstances (I'm sure you have been there too) and how amazing it is to know that the Lord will gently lift my head. When my head is lifted, I can see Him!
That is just where my eyes need and should be all the time - gazing upon my God who loves me so much and is my portion, especially on the days that are dark and dripping with despair. As Joni Eareckson Tada says,"Heartache forces us to embrace God out of desperate, urgent need. God is never closer than when your heart is aching." I absolutely love that and praise God for all of the hurt that has drawn me straight into His Arms.
A am still feeling pretty crummy and have a way to go before I am 100% but in the meantime, as I heal, I will continue to come to the Father again and again so that He can lift my head and remind me of His goodness. And wherever you may be today, I urge you to allow the Lord God to be the lifter of your head as well so that you may see His power, majesty and glory - in this dark world in which we live, there is nothing that compares.
Rejoicing in Hope,
Roxanne
This has been one of my favorite verses for a while now, one I go to on the days that I don't think I am going to make it. I have had well over a week's worth of those days lately. Last Thursday I went to the doctor with what I thought was going to be a pressure sore and as it turned out I have shingles for the second time. A couple of days later I also came down with a very severe UTI (urinary tract infection) - all the while still juggling the endless supply of seizures that come my way. I have been in so much pain that it has been hard for me to sit up for long periods of time. Needless to say, I have not had an easy time over the past week.
So, as I have done for some time now I have gone to my verse in Psalm 3. It is such a comfort to know that God is the lifter of my head. No matter the situation, whether it is sickness, despair, weariness or discouragement; the Mighty God of the Universe will lift up our heads in times when we cannot lift them ourselves. I don't know about you but this gives me great hope. There are so many days that I can't see beyond my own circumstances (I'm sure you have been there too) and how amazing it is to know that the Lord will gently lift my head. When my head is lifted, I can see Him!
That is just where my eyes need and should be all the time - gazing upon my God who loves me so much and is my portion, especially on the days that are dark and dripping with despair. As Joni Eareckson Tada says,"Heartache forces us to embrace God out of desperate, urgent need. God is never closer than when your heart is aching." I absolutely love that and praise God for all of the hurt that has drawn me straight into His Arms.
A am still feeling pretty crummy and have a way to go before I am 100% but in the meantime, as I heal, I will continue to come to the Father again and again so that He can lift my head and remind me of His goodness. And wherever you may be today, I urge you to allow the Lord God to be the lifter of your head as well so that you may see His power, majesty and glory - in this dark world in which we live, there is nothing that compares.
Rejoicing in Hope,
Roxanne
Wednesday, February 2, 2011
Covered....
Here in Spring and most of Texas we are gearing up for SNOW over the next couple of days! I have lived here my whole life and can count on one hand how many times it has snowed - it is safe to say we don't get much of the fluffy, white stuff here. We are all very excited and I am anticipating no school for Josh on Friday and maybe even a half day tomorrow - only time will tell with our crazy Texas weather!
I have been thinking about snow today and how it is such a perfect covering. Josh showed me a text picture that he received from his friend, Jared, who now lives in Oklahoma - their front yard was so wonderfully veiled with beautiful white snow. I began to think about how the Lord covers us in so many ways - just a perfect, holy covering from our perfect, holy God.
Our sins are covered when we come to know Him as our Lord and Savior - and every time after that when we come to Him with a repentant heart. Black hearts and lives that have been laced with sin are covered with forgiveness and reconciliation, our lives and hearts are blanketed with love and grace - a flawless covering, just like Jared's front yard.
We are covered with strength when we have nothing left to give - the Lord once again reaches down and wraps us in His mighty strength and reminds us so tenderly that He is all we need in the first place. Grace is stretched out over us from moment to moment when we deserve so much less - God is good to us and gives it anyway, hoping we will remember His love is rich and comes without merit. We can not earn it, we cannot save up for it, we cannot buy it, we can do nothing more than He has already done - that is the power of being covered in grace.
As another mentor and teacher of mine, Beth Moore, says, "Beloved, we are safe with God." Beth is so right, we ARE safe with our God, we can be wrapped up in Him and held closer than our very next breath - there is no place like being carried in the arms of Lord Jesus. So, today if you look outside and see snow coming down, take a few minutes to thank the Lord for all the ways He reminds us that we are covered and safe in Him. Just as the snow blankets our front yards, He will cover us in ways that can only come from the Father.
Rejoicing in Hope,
Roxanne
I have been thinking about snow today and how it is such a perfect covering. Josh showed me a text picture that he received from his friend, Jared, who now lives in Oklahoma - their front yard was so wonderfully veiled with beautiful white snow. I began to think about how the Lord covers us in so many ways - just a perfect, holy covering from our perfect, holy God.
Our sins are covered when we come to know Him as our Lord and Savior - and every time after that when we come to Him with a repentant heart. Black hearts and lives that have been laced with sin are covered with forgiveness and reconciliation, our lives and hearts are blanketed with love and grace - a flawless covering, just like Jared's front yard.
We are covered with strength when we have nothing left to give - the Lord once again reaches down and wraps us in His mighty strength and reminds us so tenderly that He is all we need in the first place. Grace is stretched out over us from moment to moment when we deserve so much less - God is good to us and gives it anyway, hoping we will remember His love is rich and comes without merit. We can not earn it, we cannot save up for it, we cannot buy it, we can do nothing more than He has already done - that is the power of being covered in grace.
As another mentor and teacher of mine, Beth Moore, says, "Beloved, we are safe with God." Beth is so right, we ARE safe with our God, we can be wrapped up in Him and held closer than our very next breath - there is no place like being carried in the arms of Lord Jesus. So, today if you look outside and see snow coming down, take a few minutes to thank the Lord for all the ways He reminds us that we are covered and safe in Him. Just as the snow blankets our front yards, He will cover us in ways that can only come from the Father.
Rejoicing in Hope,
Roxanne
Monday, January 31, 2011
Catching Up...
I think this may be the longest I have gone without writing in my blog. I must say I miss it when I am away, it is good therapy for me and I love the chance to praise my God through the written word.
The month of January is sort of a blur to me - Josh going back to school, getting our schedules back to normal after the Christmas holidays and continuing the battle with seizures that seems to never end. Last week was a really hard week for me, including a fall - those are always most difficult and hard to recover from. Praise God I did not have to make my usual trek to the ER to get stitches, we were more than excited over that - maybe I should have a "club card" at the ER, you know I could have it stamped each time I go and if I get 10 stamps the next visit is free! Just a thought!
2010 was one of the hardest years I have had in quite some time. I tried 3 new seizure medications that failed due to side effects that were so severe I just could not handle the meds, I had the shingles and a nasty case of bronchitis that took me 2 months to finally get over, found out I am going through early menopause, discovered a few new health conditions I have due to so many years on seizure meds - more on that another time and finally the loss of my Maw-Maw back in July that has stopped me in my tracks with grief. I miss her and not a day goes by that she doesn't cross my mind.
I am hopeful that this year will be a better year for me and my family. But in being hopeful for a better year, I am also reminded that God ALWAYS has a plan - especially in the hardest of times and the deepest of valleys. Over the past month I have been more focused on, "What does the Lord want to show me through all of this?" I am more concerned with trying to grow closer to my God and conform to His image and likeness than hoping or even praying for easier times in my life.
God never wastes one thing in our lives - our grief, our pain, our sickness or anything else that will take our eyes off ourselves on place them on our Great and Mighty God. Nancy Leigh DeMoss, who has fast become a wonderful teacher and hero in the faith to me, says it best,
"True joy is not the absence of pain but the sanctifying, sustaining presence of the Lord Jesus in the midst of pain. Through the whole process, whether it be a matter of days, weeks, months or years, we have His promise." That promise being 1 Peter 5:10 "The God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while will Himself restore you and make you strong, firm and steadfast."
Strong, firm and steadfast - I want that more than anything in my life - even more than healing. Thank you Lord Jesus for always being enough, even in the toughest of times, You are all I need. Help me to see that more each day and may 2011 be the year that my life honors You like no other.
Rejoicing in Hope,
Roxanne
The month of January is sort of a blur to me - Josh going back to school, getting our schedules back to normal after the Christmas holidays and continuing the battle with seizures that seems to never end. Last week was a really hard week for me, including a fall - those are always most difficult and hard to recover from. Praise God I did not have to make my usual trek to the ER to get stitches, we were more than excited over that - maybe I should have a "club card" at the ER, you know I could have it stamped each time I go and if I get 10 stamps the next visit is free! Just a thought!
2010 was one of the hardest years I have had in quite some time. I tried 3 new seizure medications that failed due to side effects that were so severe I just could not handle the meds, I had the shingles and a nasty case of bronchitis that took me 2 months to finally get over, found out I am going through early menopause, discovered a few new health conditions I have due to so many years on seizure meds - more on that another time and finally the loss of my Maw-Maw back in July that has stopped me in my tracks with grief. I miss her and not a day goes by that she doesn't cross my mind.
I am hopeful that this year will be a better year for me and my family. But in being hopeful for a better year, I am also reminded that God ALWAYS has a plan - especially in the hardest of times and the deepest of valleys. Over the past month I have been more focused on, "What does the Lord want to show me through all of this?" I am more concerned with trying to grow closer to my God and conform to His image and likeness than hoping or even praying for easier times in my life.
God never wastes one thing in our lives - our grief, our pain, our sickness or anything else that will take our eyes off ourselves on place them on our Great and Mighty God. Nancy Leigh DeMoss, who has fast become a wonderful teacher and hero in the faith to me, says it best,
"True joy is not the absence of pain but the sanctifying, sustaining presence of the Lord Jesus in the midst of pain. Through the whole process, whether it be a matter of days, weeks, months or years, we have His promise." That promise being 1 Peter 5:10 "The God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while will Himself restore you and make you strong, firm and steadfast."
Strong, firm and steadfast - I want that more than anything in my life - even more than healing. Thank you Lord Jesus for always being enough, even in the toughest of times, You are all I need. Help me to see that more each day and may 2011 be the year that my life honors You like no other.
Rejoicing in Hope,
Roxanne
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