I have been wanting to start updating my blog again for some time. So many Lyme patients reach out to me weekly. I want my journey to be honest. (Which wont always be pretty). My HOPE is to help and support those of you who are fighting along with me. If you are new to my blog, WELCOME!
Whether your struggle is chronic illness or you are struggling with life's everyday challenges let me start by saying, "Me to".
It's been about 2 years now that I have been on a good path with my continued healing/maintaining. I am now a functioning Lyme patient, able to do life most of the time while standing on two feet. This is a welcome change! But it's amazing how easily I can fall back to the old habits that lead to the severity of of my illness in the first place. Its' the pit fall of being a type A, perfectionist, must please everyone, kind of person.
So now you know.
I don't have it all together.
Nor will I ever.
Which means I have to be committed to loving myself, my mistakes, my weaknesses as much as I embrace my strengths. I'm working on it. Actively. I want to create healthier patterns that will make for a long term "healthy" me. So I have decided that instead of focusing so much on all my self help healing books and all the "new" things (there are always new things) I must try to fix this chronic illness, instead I am going to focus on healthier patterns.
When I've made this my focus in the past, I was always at my healthiest.
This morning Proverbs 3 vs 21-24 summed it up:
21 My child, don't lose sight of good planning and insight. Hang on to them, 22 for they fill you with life and bring you honor and respect. 23 They keep you safe on your way and keep your feet from stumbling. 24 You can lie down without fear and enjoy pleasant dreams.
I need a plan. A plan that holds me securely to the patterns that equal success. Success for me is defined by being the healthiest I can be... first for myself (that's the hard part), then for my husband, children, family and friends and lastly for the work God has called me to.
Health. For a chronically ill person that is hard to define. There is never a day without a symptom or reminder that I live in a broken body that cannot keep up with, well, most everyone. Problem is, my mind is alive, healthy (even with Lyme brain) and is not often willing to listen to its broken counterpart. I am thankful for that strong mind. It kept me alive, saved my life and allowed me to learn how to HOPE (but that's a blog for another day ;).
What I need to do now is put that strong mind to work and search after wisdom, balance and that "happy place" that leads to my definition of success. The tricky part is, that never happens by accident. Good planning is the only thing that ever gets us anywhere we truly want to be. Bad planning leaves us wandering, lost, overwhelmed and unproductive.
My chronic illness leaves me with limitations. I hate that word. But to be honest, we all have them. We do better when we embrace them as "healthy boundaries". When we start creating healthy boundaries in our lives we must also be ready to disappoint some people. I cannot be everything to everyone or I will be nothing to those who are my priority.
So "No, I wont be able to make it" and "No, I cannot take that on right now" have to become daily verb-age for me. These are hard words for us "people pleasers". But I am planning to start using them because I want to succeed. No explanation needed. Explanations are exhausting and my need to always give one is a weakness. I want to be healthy. Period.
So today I join a challenge group that is going to help me with the planning part. I am excited for the support. It will provide that "good insight". This planning and insight are there to produce the healthy, balanced patterns I need for success.
My priorities/healthy plans are:
Find time with God daily.
Eat clean.
Exercise regularly.
Place boundaries around my active hours of the day.
Have fun with my family and friends.
Rest.
These healthy patterns are simple. Life giving. They are my tools for success. I will place them first in my life...everything else will have to pencil in an appointment.
If you need me, I'll be resting easily with my "pleasant dreams" (Prov 4:24)...and now that I have put it out in blogger world, you can hold me to it :)
Hope Defines Me
Monday, June 9, 2014
Sunday, January 2, 2011
Yes...its been a year...wayyyyyy overdue for an update!!
Sooo...I totally broke my promise from my last post and did not blog for...well...A YEAR :(
To be honest, this has been a VERY difficult year emotionally for me. I have been fighting to beat this disease so I could get back to being a wife, a mom and to the work of our ministry with All Access.
I spent the first six months of this year FIGHTING to keep my ministry active and alive and the second six months laying it down and realizing my journey to heal had to remain number 1. To be honest... I was DEVASTED!!! I did not want to do this "fighting Lyme Disease thing" anymore. I wanted my life back and it hurt so much...I did not want to talk about it or blog about it.
I do regret that now...I wish I had the courage to share that pain during the process but I am praying I have more strength and courage in 2011 to share the HIGHS and LOWS with you all. So I do want to start by taking a moment to go back and record my 2010 year...not so much the emotional journey (I will write more of that in some separate blogs) but I want to remember the "physical" process and hope it will encourage some other Lymies to continue the FIGHT and know your NOT alone!!! I did write 2 short blogs during 2010 but never posted them to my blog (no idea why??). Rather than delete them I decided to go ahead and post them with date they were written, so they are just below this email if you care to read :)
So how fast can I scoop 2010...hmmm...
WINTER 2010: In December 2009 I was hit with another MAJOR set back. What I thought was just more Lyme pain turned out to be a severely bulged disc in my back. This was a reoccurring issue from 2002. It took me over 2 years to rehab the disc without surgery from 2002-2004. This time, it was worse...even my amazing Dr that rehabbed me last time and hates surgery said...SURGERY!!! Of course this was not good news with the Lyme recovery. My specialist wanted me to TRY and rehab while I worked hard on researching the best surgery options...ps...there are really no good options as a Lyme patient!!
Rehab included: back brace, traction 2 to 3 times a week, no sitting, no bending, no lifting, mostly laying...all day long!
The most frustrating thing was that as of the beginning December 2009 I had just finished a six week round of oral Doxy along with pulsing oral Flagyl and I was feeling more energy than I had had since I first fell ill in 2008..and now I was put back to bed for my back :( MENTALLY...this was super challenging!! Rehab continued through May and as my health declined once again, I was back to pulsing oral Doxy along with my weekly trips into the city for IV Vitamin treatment.
SPRING 2010: By May we thought that maybe I would be able to sneak through this without surgery as I had begun to feel better after 4 months of rehab. On May 10th I woke up with a very Strong Herx reaction that landed me in the hospital thinking maybe my bulge had pressed into my spinal column and I may need immediate surgery....very SCARY!! Welllll...instead it was a Herx that had caused a nerve to "freak out" and cause some crazy symptoms. The positive was this episode forced another MRI which showed us that all the rehab had WORKED :) I WASN'T curred, in fact the Herx had really aggravated the nerve and I was in a bunch of pain for over a month...but surgery was no longer even an option and homeopathy and acupuncture became my answer to calm the nerve!!! The Surgeon said it was a MIRACLE!! I agree...
PS...My gut feeling is that both my herniations (2002 & 2009) had to do with the LYME and it causing weakness in my spine. I think that until I am able to really exercise and strengthen my spine, abs and all the muscles that protect those discs...I will still be at risk to re-herniate. I am continuing all my rehab in hopes of the day I will be strong enough to really exercise again!!
I also had another pretty major episode in May. My weekly IV Vitamin Therapy brought on a severe episode of vomiting, diarrhea and almost passing out in the Specialist office. Fortunately my Specialist was still in the office and took me straight back to test my sugars. I was at 400..normal is between 70 to 90. This promoted a 5hr glucose test and a diagnosis of hypoglycemia and borderline insulin resistance. This mean't more tweaking of my already ridiculously strict diet...arrrghhhh...and lots of finger pricks as I tested my blood at least twice a day. We still have no full answers on how this all works into my recovery...still a bit confusing for me...we will see!
SUMMER 2010: I NEEDED A BREAK...every Lyme Patient has this moment!! You are DONE!! I was actually feeling good...having some full days of activity...WHAT!!! I know...and I was afraid to take anything that may cause a Herx. I knew if I slowed down my treatment I would relapse...probably badly...but I NEEDED the break! It all came at a good time since we were MOVING...yes MOVING... into a new house after 11 years of building our family in 1 HOME...talk about major purging and packing!! Kind of a scary undertaking to a chronically ill Mom who rarely has a good day. BUT...God is good!! I had about exactly 3 weeks of mostly GOOD days :) Just enough to do the bulk of the work (with tons of help and NO LIFTING) and we where finally in our new home!!
By the first week of August I was reading on my new porch, enjoying the summer breezes and our new close proximity to a great beach...but then it started happening...the good days were less and less and all those horrible symptoms started taking over once again...the weakness being the worst!! I was desperate for my Specialist who was overworked and ungetable due to all the LYME on Long Island in the the summer. The relapse was happening...
FALL 2010: On Sept 28th I finally had my long awaited appointment with my Specialist...in my HOME!! Yes, my relocation out east meant that a good majority of my appointment would now be in my home because it was closer for my DR :) I admitted my self imposed BREAK...he kindly evaluated and put me back on treatment...Doxy, Herbs (Samento & Banderol) along with a more minimal list of supplements to try and keep my stomach stable...and then sent me for a ton of blood work! The most memorable moment was when we decided IV antibiotic treatment was worth pursuing...a huge step for me! One I wanted to avoid but began to feel peace that this was the right time and the right step.
After spending Oct and most of November on and off oral Doxy due to stomach issues and feeling pretty crappy...I knew IV antibiotic was the next best step! I waited to hear from my Specialist that maybe my Insurance had actually approved my IV treatment. This all led to a crazy few weeks right over Thanksgiving of me literally playing the middle man between my specialist, hospital, homecare company, home nurse, insurance company and nearly losing my mind!!! This is what it takes as a Lyme Patient to get the treatment that should be right at our finger tips..instead...if you don't fight...you get NOTHING!!
DECEMBER 2010: First week of December after literally 2 weeks of FIGHTING I finally had my first IV antibiotic treatment..exactly one week after I had my picc line placed in a hospital. Of course this success did not come without a set back...I almost lost the picc the night before my treatment started. A trip to the ER due to major pain in the picc arm and a loss of warmth in the hand led my specialist and myself to believe the Er DR would pull it...PANIC.. after all it had taken to get it put in :( Instead God intervened again and I had two super Lyme Friendly medical professionals take care of me...unheard of in Southhampton Hospital!!! GOD IS GOOD!!! The line was tested and all was good...my body or those "spirochetes" were just ticked off and wanted it out...but we said "NO" and eventually the pain subsided and all was well :) Its still hurts on and off but body is much happier with it now!
We started SLOW...my specialist was super worried about how I would handle the treatment. I could hardly get through Vitamin IV therapy without becoming VERY ill...how would I respond to IV antibiotic???? So 1 gram of Rocephin (half does) for 14 days was the starting point. I DID IT!! After 3 weeks we moved to 2 grams and I have now successfully completed 2 weeks on 2 grams :)
LOW POINTS....Had some rough Herxing...totally stiff neck more than once, laid out flat for 48hrs at a time, weakness, major muscle spasms, loss of the use of my legs, major nero stuff, etc...the USUAL!! I also have become badly anemic once again and am back to NYC for IRON IV treatment along with Vit IV treatment twice a month. Hydration at home through the IV has also become a regular part of my treatment every other day. I also had to be carried out of church for the first time after 2 years of somehow avoiding that...humility continues to be a part of this journey!! I spent New Years Eve Herxing terrible, ruining my families plans to go out and wondering if this journey will ever end...which means...it was time to remind myself as I do often of the high points...
HIGH POINTS...My days in bed have been less lonely this year thanks to our 2009 Christmas gift of our puppy "Coco". I have never had a dog before her and she is my most faithful little friend! I was able to spend time talking and sharing with many other Lyme patients this year. This has become a new "priority" for me as we NEED each other!! I was also surrounded by my amazing family and friends who continue to love and support us daily!! I was able to be in the Briner Wedding, attend my sister in-laws wedding, attend YWAM's 50th celebration in Fla as well as many other special celebration here at home :)
I am a different person than I was almost 3 years ago...in every way! Some have asked if I think IV antibiotics will be my "turning point"...I think the positive part of this question is that it has made me realize how content I am in NOT knowing the answer to it! I think I end this year with my HIGH POINT being that I have peace in the process. I really have no idea when I will feel "well" or "normal" again...and that's OK!! I am resting in the process...its taken almost 3 years to get to this point but as I enter 2011 I feel that I have HOPE and PEACE all at the same time. If I find healing, or remission or just another year of more treatment...2011 will be successful...part of FIGHTING is RESTING and TRUSTING in the arms of Jesus!!
Soooooo...2010...was also a successful year!!! A year full of fighting, full of challenges, full of highs and lows in this journey with Lyme...but is was also the year I found PEACE!! Now my New Years resolution is to walk in that PEACE in 2011!! I pray for all of my fellow Lymies who are also suffering daily or for those of you who face your own daily challenges that you to will also find PEACE and REST in 2011!! HEALING is a daily journey...and we are on our way!!!
I can not end a post recapping the whole year without saying thank you to all those who prayed so faithfully!! Your prayers are felt daily and carry me in this journey...THANK YOU...and please don't stop!!
PS...so I guess the answer to my starting question is...not that fast...thanks for reading!! :( Ohhh..and I have so many other cool stories and lessons learned I know I want to share in future post...but we will leave that for the next one which will be less than a year from now...PROMISE!!
To be honest, this has been a VERY difficult year emotionally for me. I have been fighting to beat this disease so I could get back to being a wife, a mom and to the work of our ministry with All Access.
I spent the first six months of this year FIGHTING to keep my ministry active and alive and the second six months laying it down and realizing my journey to heal had to remain number 1. To be honest... I was DEVASTED!!! I did not want to do this "fighting Lyme Disease thing" anymore. I wanted my life back and it hurt so much...I did not want to talk about it or blog about it.
I do regret that now...I wish I had the courage to share that pain during the process but I am praying I have more strength and courage in 2011 to share the HIGHS and LOWS with you all. So I do want to start by taking a moment to go back and record my 2010 year...not so much the emotional journey (I will write more of that in some separate blogs) but I want to remember the "physical" process and hope it will encourage some other Lymies to continue the FIGHT and know your NOT alone!!! I did write 2 short blogs during 2010 but never posted them to my blog (no idea why??). Rather than delete them I decided to go ahead and post them with date they were written, so they are just below this email if you care to read :)
So how fast can I scoop 2010...hmmm...
WINTER 2010: In December 2009 I was hit with another MAJOR set back. What I thought was just more Lyme pain turned out to be a severely bulged disc in my back. This was a reoccurring issue from 2002. It took me over 2 years to rehab the disc without surgery from 2002-2004. This time, it was worse...even my amazing Dr that rehabbed me last time and hates surgery said...SURGERY!!! Of course this was not good news with the Lyme recovery. My specialist wanted me to TRY and rehab while I worked hard on researching the best surgery options...ps...there are really no good options as a Lyme patient!!
Rehab included: back brace, traction 2 to 3 times a week, no sitting, no bending, no lifting, mostly laying...all day long!
The most frustrating thing was that as of the beginning December 2009 I had just finished a six week round of oral Doxy along with pulsing oral Flagyl and I was feeling more energy than I had had since I first fell ill in 2008..and now I was put back to bed for my back :( MENTALLY...this was super challenging!! Rehab continued through May and as my health declined once again, I was back to pulsing oral Doxy along with my weekly trips into the city for IV Vitamin treatment.
SPRING 2010: By May we thought that maybe I would be able to sneak through this without surgery as I had begun to feel better after 4 months of rehab. On May 10th I woke up with a very Strong Herx reaction that landed me in the hospital thinking maybe my bulge had pressed into my spinal column and I may need immediate surgery....very SCARY!! Welllll...instead it was a Herx that had caused a nerve to "freak out" and cause some crazy symptoms. The positive was this episode forced another MRI which showed us that all the rehab had WORKED :) I WASN'T curred, in fact the Herx had really aggravated the nerve and I was in a bunch of pain for over a month...but surgery was no longer even an option and homeopathy and acupuncture became my answer to calm the nerve!!! The Surgeon said it was a MIRACLE!! I agree...
PS...My gut feeling is that both my herniations (2002 & 2009) had to do with the LYME and it causing weakness in my spine. I think that until I am able to really exercise and strengthen my spine, abs and all the muscles that protect those discs...I will still be at risk to re-herniate. I am continuing all my rehab in hopes of the day I will be strong enough to really exercise again!!
I also had another pretty major episode in May. My weekly IV Vitamin Therapy brought on a severe episode of vomiting, diarrhea and almost passing out in the Specialist office. Fortunately my Specialist was still in the office and took me straight back to test my sugars. I was at 400..normal is between 70 to 90. This promoted a 5hr glucose test and a diagnosis of hypoglycemia and borderline insulin resistance. This mean't more tweaking of my already ridiculously strict diet...arrrghhhh...and lots of finger pricks as I tested my blood at least twice a day. We still have no full answers on how this all works into my recovery...still a bit confusing for me...we will see!
SUMMER 2010: I NEEDED A BREAK...every Lyme Patient has this moment!! You are DONE!! I was actually feeling good...having some full days of activity...WHAT!!! I know...and I was afraid to take anything that may cause a Herx. I knew if I slowed down my treatment I would relapse...probably badly...but I NEEDED the break! It all came at a good time since we were MOVING...yes MOVING... into a new house after 11 years of building our family in 1 HOME...talk about major purging and packing!! Kind of a scary undertaking to a chronically ill Mom who rarely has a good day. BUT...God is good!! I had about exactly 3 weeks of mostly GOOD days :) Just enough to do the bulk of the work (with tons of help and NO LIFTING) and we where finally in our new home!!
By the first week of August I was reading on my new porch, enjoying the summer breezes and our new close proximity to a great beach...but then it started happening...the good days were less and less and all those horrible symptoms started taking over once again...the weakness being the worst!! I was desperate for my Specialist who was overworked and ungetable due to all the LYME on Long Island in the the summer. The relapse was happening...
FALL 2010: On Sept 28th I finally had my long awaited appointment with my Specialist...in my HOME!! Yes, my relocation out east meant that a good majority of my appointment would now be in my home because it was closer for my DR :) I admitted my self imposed BREAK...he kindly evaluated and put me back on treatment...Doxy, Herbs (Samento & Banderol) along with a more minimal list of supplements to try and keep my stomach stable...and then sent me for a ton of blood work! The most memorable moment was when we decided IV antibiotic treatment was worth pursuing...a huge step for me! One I wanted to avoid but began to feel peace that this was the right time and the right step.
After spending Oct and most of November on and off oral Doxy due to stomach issues and feeling pretty crappy...I knew IV antibiotic was the next best step! I waited to hear from my Specialist that maybe my Insurance had actually approved my IV treatment. This all led to a crazy few weeks right over Thanksgiving of me literally playing the middle man between my specialist, hospital, homecare company, home nurse, insurance company and nearly losing my mind!!! This is what it takes as a Lyme Patient to get the treatment that should be right at our finger tips..instead...if you don't fight...you get NOTHING!!
DECEMBER 2010: First week of December after literally 2 weeks of FIGHTING I finally had my first IV antibiotic treatment..exactly one week after I had my picc line placed in a hospital. Of course this success did not come without a set back...I almost lost the picc the night before my treatment started. A trip to the ER due to major pain in the picc arm and a loss of warmth in the hand led my specialist and myself to believe the Er DR would pull it...PANIC.. after all it had taken to get it put in :( Instead God intervened again and I had two super Lyme Friendly medical professionals take care of me...unheard of in Southhampton Hospital!!! GOD IS GOOD!!! The line was tested and all was good...my body or those "spirochetes" were just ticked off and wanted it out...but we said "NO" and eventually the pain subsided and all was well :) Its still hurts on and off but body is much happier with it now!
We started SLOW...my specialist was super worried about how I would handle the treatment. I could hardly get through Vitamin IV therapy without becoming VERY ill...how would I respond to IV antibiotic???? So 1 gram of Rocephin (half does) for 14 days was the starting point. I DID IT!! After 3 weeks we moved to 2 grams and I have now successfully completed 2 weeks on 2 grams :)
LOW POINTS....Had some rough Herxing...totally stiff neck more than once, laid out flat for 48hrs at a time, weakness, major muscle spasms, loss of the use of my legs, major nero stuff, etc...the USUAL!! I also have become badly anemic once again and am back to NYC for IRON IV treatment along with Vit IV treatment twice a month. Hydration at home through the IV has also become a regular part of my treatment every other day. I also had to be carried out of church for the first time after 2 years of somehow avoiding that...humility continues to be a part of this journey!! I spent New Years Eve Herxing terrible, ruining my families plans to go out and wondering if this journey will ever end...which means...it was time to remind myself as I do often of the high points...
HIGH POINTS...My days in bed have been less lonely this year thanks to our 2009 Christmas gift of our puppy "Coco". I have never had a dog before her and she is my most faithful little friend! I was able to spend time talking and sharing with many other Lyme patients this year. This has become a new "priority" for me as we NEED each other!! I was also surrounded by my amazing family and friends who continue to love and support us daily!! I was able to be in the Briner Wedding, attend my sister in-laws wedding, attend YWAM's 50th celebration in Fla as well as many other special celebration here at home :)
I am a different person than I was almost 3 years ago...in every way! Some have asked if I think IV antibiotics will be my "turning point"...I think the positive part of this question is that it has made me realize how content I am in NOT knowing the answer to it! I think I end this year with my HIGH POINT being that I have peace in the process. I really have no idea when I will feel "well" or "normal" again...and that's OK!! I am resting in the process...its taken almost 3 years to get to this point but as I enter 2011 I feel that I have HOPE and PEACE all at the same time. If I find healing, or remission or just another year of more treatment...2011 will be successful...part of FIGHTING is RESTING and TRUSTING in the arms of Jesus!!
Soooooo...2010...was also a successful year!!! A year full of fighting, full of challenges, full of highs and lows in this journey with Lyme...but is was also the year I found PEACE!! Now my New Years resolution is to walk in that PEACE in 2011!! I pray for all of my fellow Lymies who are also suffering daily or for those of you who face your own daily challenges that you to will also find PEACE and REST in 2011!! HEALING is a daily journey...and we are on our way!!!
I can not end a post recapping the whole year without saying thank you to all those who prayed so faithfully!! Your prayers are felt daily and carry me in this journey...THANK YOU...and please don't stop!!
PS...so I guess the answer to my starting question is...not that fast...thanks for reading!! :( Ohhh..and I have so many other cool stories and lessons learned I know I want to share in future post...but we will leave that for the next one which will be less than a year from now...PROMISE!!
Oh How He Loves Us.... (written June 13, 2010)
Oh How He loves us...these are words I have been hanging on to for some months...words of truth that carry me through the days I struggle to stand under the weight of circumstances! It has been a roller coaster since I last blogged. I have wanted to blog in the midst of it but sometimes that weight seems to steal my words and jumble my thoughts...lets sum up to bring us up to date:
November 2009: Came off 2 months of some heavy treatment and extreme Herxing to find there was finally some improvement. My ENERGY was so improved and Thanksgiving was an enjoyable time with family.
December 2009 & January 2010: Strange pain in my right hip which quicly escalated and truned into a limp sent me back to a new round with all my Drs and more test. To our surprise on Dec 12th we discovered a disc I had herniated back in 2002 had now re-herniated and far worse than ever before. SURGERY became the word of the day and a big concern as my body was not up to taking that hit...sooo we began therapy, praying for change and began looking into all our surgery options (aka...lots more trips to new Drs and surgeons)!!
February -April 2010: February1, 2010 first marked the 2 year anniversary of my relapse and unfortunately the end of my temporary burst of energy and reprieve from the aches and pains. Symptoms all began slowly escalating again so back to heavy treatment, more herxing, and fighting for energy daily. Could still see a marked improvement from last year so I knew although there was struggle we where moving in the right direction. I also went back to work full time with All Access which meant heaps of stress where piled on my already fragile state. It was a daily time of leaning into God for each 24hrs that lay ahead...I was a professional at living day to day at this point so to be honest it felt more normal than it has since this journey began...its a good thing as struggle brings change in our life and one day we suddenly look back and realize we have adjusted!
*This where I stopped writing this entry (see my post from Jan 2, 2011 for the rest of the scope) but I did post the words below to the song I had been hanging onto during this time. It is still a huge comfort to me and pray it will be the same to you as you see...OH HOW HE LOVES US!!
He is jealous for me,
Loves like a hurricane, I am a tree,
Bending beneath the weight of his wind and mercy.
When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realize just how beautiful You are,
And how great Your affections are for me.
And oh, how He loves us so,
Oh how He loves us,
How He loves us all
Yeah, He loves us,
Oh! how He loves us,
Oh! how He loves us,
Oh! how He loves.
We are His portion and He is our prize,
Drawn to redemption by the grace in His eyes,
If grace is an ocean, we’re all sinking.
And Heaven meets earth like an unforeseen kiss,
And my heart turns violently inside of my chest,
I don’t have time to maintain these regrets,
When I think about, the way…
Yeah, He loves us,
Oh! how He loves us,
November 2009: Came off 2 months of some heavy treatment and extreme Herxing to find there was finally some improvement. My ENERGY was so improved and Thanksgiving was an enjoyable time with family.
December 2009 & January 2010: Strange pain in my right hip which quicly escalated and truned into a limp sent me back to a new round with all my Drs and more test. To our surprise on Dec 12th we discovered a disc I had herniated back in 2002 had now re-herniated and far worse than ever before. SURGERY became the word of the day and a big concern as my body was not up to taking that hit...sooo we began therapy, praying for change and began looking into all our surgery options (aka...lots more trips to new Drs and surgeons)!!
February -April 2010: February1, 2010 first marked the 2 year anniversary of my relapse and unfortunately the end of my temporary burst of energy and reprieve from the aches and pains. Symptoms all began slowly escalating again so back to heavy treatment, more herxing, and fighting for energy daily. Could still see a marked improvement from last year so I knew although there was struggle we where moving in the right direction. I also went back to work full time with All Access which meant heaps of stress where piled on my already fragile state. It was a daily time of leaning into God for each 24hrs that lay ahead...I was a professional at living day to day at this point so to be honest it felt more normal than it has since this journey began...its a good thing as struggle brings change in our life and one day we suddenly look back and realize we have adjusted!
*This where I stopped writing this entry (see my post from Jan 2, 2011 for the rest of the scope) but I did post the words below to the song I had been hanging onto during this time. It is still a huge comfort to me and pray it will be the same to you as you see...OH HOW HE LOVES US!!
He is jealous for me,
Loves like a hurricane, I am a tree,
Bending beneath the weight of his wind and mercy.
When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realize just how beautiful You are,
And how great Your affections are for me.
And oh, how He loves us so,
Oh how He loves us,
How He loves us all
Yeah, He loves us,
Oh! how He loves us,
Oh! how He loves us,
Oh! how He loves.
We are His portion and He is our prize,
Drawn to redemption by the grace in His eyes,
If grace is an ocean, we’re all sinking.
And Heaven meets earth like an unforeseen kiss,
And my heart turns violently inside of my chest,
I don’t have time to maintain these regrets,
When I think about, the way…
Yeah, He loves us,
Oh! how He loves us,
Oh! how He loves us,
Oh! how He loves.
NEW Challenges for 2010...Blown Disk....Surgery Needed ASAP (written January 9, 2010)
Going through some new challenges with a blown disc in my back they found just before Christmas. I rehabbed this disc in 2002 but this time it will need surgery. With the Lyme Disease my immune system is very weak and I can only have a certain type of back surgery. Conventional open back surgery is not an option for me. This has also put most of my Lyme therapies and treatment on hold in order to protect my back. I ask for your prayers as I am trying to find a neurosurgeon who does what I need and will either help us financially or my insurance will cover it.
I am back on my back again. I am restricted to lying and limited standing and walking. No sitting, bending or lifting for risk of permanent nerve damage in my right leg and foot. This has been very difficult to handle after all we have walked through in the last 2 yrs from my being bed & wheelchair bound to limited activity now back to being bed bound again. I was just beginning to make some headway with the Lyme when this all occurred!
Praying for the right surgeon and surgery ASAP so I can rehab and get back to my Lyme recovery and being a wife and mother! Leaning into God's promises knowing He will never give us more than we can handle!! Thank you for your prayers!
I am back on my back again. I am restricted to lying and limited standing and walking. No sitting, bending or lifting for risk of permanent nerve damage in my right leg and foot. This has been very difficult to handle after all we have walked through in the last 2 yrs from my being bed & wheelchair bound to limited activity now back to being bed bound again. I was just beginning to make some headway with the Lyme when this all occurred!
Praying for the right surgeon and surgery ASAP so I can rehab and get back to my Lyme recovery and being a wife and mother! Leaning into God's promises knowing He will never give us more than we can handle!! Thank you for your prayers!
Friday, October 9, 2009
WELCOME to my "resurrected" BLOG!!
WELCOME!! I am happy to be back and blogging again! If you scroll down to my first post on my "resurrected" blog you will find an explanation as to why I have been out of the blogging world for awhile!!
On your way down you will find all of my original emails and blogs from my old blog re-posted so if you are new to my blog and want to hear the WHOLE STORY...feel free to check them out!
For those of you who where keeping up with my blog before there are a couple of new blogs I did not get to post before that you may want to read..."My Current Reality" from 4/1/09, "My New Lyme Specialist" from 4/20/09 and my newest posts, "Why...Its the Climb", "Our Current Mountain" and "How Lyme feels on October 9, 2009" from today!
Hope you can take the time to catch up with me on my on-going journey to heal. Would love to hear your comments and feedback as it has been awhile. It would be great if you would like to become a "follower" of my blog so you can hear the latest updates as soon as they come out.
A special WELCOME to all my fellow Lymies and many other who are also fighting chronic illness. Pray you are encouraged, empowered and motivated in ever way to fight another day!
For all those who have been praying and supporting us so diligently, I am so sorry it has taken this long to get a current update posted! I hope you know we love you and think of you and pray for you daily as well...no more long pauses...the blogs will keep comin :)
A promise from a sick women who should not make promises...its made in FAITH!!
PS...Before you read anymore, don't forget to check my DISCLAIMER :) LOL!!
On your way down you will find all of my original emails and blogs from my old blog re-posted so if you are new to my blog and want to hear the WHOLE STORY...feel free to check them out!
For those of you who where keeping up with my blog before there are a couple of new blogs I did not get to post before that you may want to read..."My Current Reality" from 4/1/09, "My New Lyme Specialist" from 4/20/09 and my newest posts, "Why...Its the Climb", "Our Current Mountain" and "How Lyme feels on October 9, 2009" from today!
Hope you can take the time to catch up with me on my on-going journey to heal. Would love to hear your comments and feedback as it has been awhile. It would be great if you would like to become a "follower" of my blog so you can hear the latest updates as soon as they come out.
A special WELCOME to all my fellow Lymies and many other who are also fighting chronic illness. Pray you are encouraged, empowered and motivated in ever way to fight another day!
For all those who have been praying and supporting us so diligently, I am so sorry it has taken this long to get a current update posted! I hope you know we love you and think of you and pray for you daily as well...no more long pauses...the blogs will keep comin :)
A promise from a sick women who should not make promises...its made in FAITH!!
PS...Before you read anymore, don't forget to check my DISCLAIMER :) LOL!!
How Lyme feels on October 9, 2009....
I have posted some important new blogs but realized non of them answered the question "How is the Lyme making you feel these days...???" So if you where wondering how I'm doin here is a quick update:
On October 9,2009 I'm bedridden soooo...Lyme is still kickin my but....but I have to say I don't put up with it and I'm kickin right back!! I am doing over 6 therapies a week including Physical Therapy, Massage Therapy, Osteopathic Muscular Therapy (OMT), Acupuncture, Colon Hydrotherapy, In-fared Sauna Therapy and IV Vitamin Therapy along with other IV treatment and antibiotics on and off. Homeopathy and Chiropractic also fall into the mix here and there and I take enough supplements a day to sink a ship...or at least one of my boys bath toys!I am still seeing my Specialist in NYC, Jerry Simons (my life saver:), once a month but I am in NYC every week for the IV treatment. I am also still hard core on my nutritional plan which is KEY to my recovery!
To Heal from Lyme you have to approach it from four directions:
1) Boost the Immune system to...
2) Kill the BACTERIA but, then you must...
3) Detox from the bacteria die off and overload of toxins in your system so you can...
4) Strengthen your body through Exercise, Nutrition and Decreased Stress which leads us back to #1...and around we go
Each one of my above mentioned Therapies fall into one of these four categories and therefore all are crucial to my ongoing recovery! They also take up my ENTIRE week!! I am left to try and fit in all my Mom & Wife responsibilities between my therapies and often bedridden state.
BUT...I am making progress...I was bedridden and wheelchair bound almost daily at the beginning of the year. I am now up and around able to perform basic tasks for up to half a day on many days. I still have a list of symptoms a mile long and new ones come and go due to treatment which is part of the process. Some days I still can't walk and am bed or couch bound but I bounce back quicker than I was and usually a good day isn't far away.
My doctors originally said this would take a few years to get under control due to the length of time I've been sick, but we still hold out hope to a full remission in 2010!
Sending Chronic Lyme into remission is a roller coaster ride. You may feel "symptom controlled" one day and be "symptom overwhelmed" the next. My life changes by the hour but I am secure in the sense that we are doing ALL we can and I believe we will reach our goal of remission...one day at a time!
PS...Please take the time to read my last blog, "Our Current Mountain" as it details what it will take to financially keep me in treatment and working toward recovery!
On October 9,2009 I'm bedridden soooo...Lyme is still kickin my but....but I have to say I don't put up with it and I'm kickin right back!! I am doing over 6 therapies a week including Physical Therapy, Massage Therapy, Osteopathic Muscular Therapy (OMT), Acupuncture, Colon Hydrotherapy, In-fared Sauna Therapy and IV Vitamin Therapy along with other IV treatment and antibiotics on and off. Homeopathy and Chiropractic also fall into the mix here and there and I take enough supplements a day to sink a ship...or at least one of my boys bath toys!I am still seeing my Specialist in NYC, Jerry Simons (my life saver:), once a month but I am in NYC every week for the IV treatment. I am also still hard core on my nutritional plan which is KEY to my recovery!
To Heal from Lyme you have to approach it from four directions:
1) Boost the Immune system to...
2) Kill the BACTERIA but, then you must...
3) Detox from the bacteria die off and overload of toxins in your system so you can...
4) Strengthen your body through Exercise, Nutrition and Decreased Stress which leads us back to #1...and around we go
Each one of my above mentioned Therapies fall into one of these four categories and therefore all are crucial to my ongoing recovery! They also take up my ENTIRE week!! I am left to try and fit in all my Mom & Wife responsibilities between my therapies and often bedridden state.
BUT...I am making progress...I was bedridden and wheelchair bound almost daily at the beginning of the year. I am now up and around able to perform basic tasks for up to half a day on many days. I still have a list of symptoms a mile long and new ones come and go due to treatment which is part of the process. Some days I still can't walk and am bed or couch bound but I bounce back quicker than I was and usually a good day isn't far away.
My doctors originally said this would take a few years to get under control due to the length of time I've been sick, but we still hold out hope to a full remission in 2010!
Sending Chronic Lyme into remission is a roller coaster ride. You may feel "symptom controlled" one day and be "symptom overwhelmed" the next. My life changes by the hour but I am secure in the sense that we are doing ALL we can and I believe we will reach our goal of remission...one day at a time!
PS...Please take the time to read my last blog, "Our Current Mountain" as it details what it will take to financially keep me in treatment and working toward recovery!
Our Current MOUNTAIN...
For any Family one of the greatest fears we face is one of our loved ones being diagnosed with a debilitating or deadly disease! Then...almost more scary is the reality of what it will financially take to FIGHT and WIN the battle for Life!
Dan and I have had to face both these fears since February '08. The following is a letter written on behalf of my husband about our journey and the current financial MOUNTAIN we face...would you take the time to read it (even if you know my story) and possibly consider what you may be able to do to help us "get to the top":
LETTER FROM MY HUBBY...
Hello, my name is Daniel Burd. I appreciate you taking the time to read this letter and consider my family’s current situation and our need for assistance. Let me begin by telling you a little about our family and our full time volunteer work.
My wife, Rebecca, and I have been full time, unsalaried volunteers for a non-profit missions organization called Youth With A Mission (YWAM) since 1995. We are located on the Smithtown campus right here on Long Island.
Over the last 14 years we have co-founded and directed a ministry within YWAM called All Access Productions. We work in public and private schools across the Nation presenting a modern day musical called "No More Victims", confronting the epidemic of bullying and violence within our schools. Our mission is to teach young people to “Speak Life” to one another to stop the violence before it starts, ending the pattern of violent school shootings. We want to see young people attend school without the fear of being bullied, or even worse, the victim of an act of violence.
Our program has been featured at several State Safety Academy Conferences and was highlighted last fall at the International Bullying Prevention Awareness Conference. It has been said by the professionals in the field of education that "No More Victims" is "the most effective anti-violence school assembly program available to schools" today. We have seen over 200,000 young people over the last 14 years in hundreds of schools across the country. You can learn more about our program at www.allaccessny.org.
Along with being the Directors for All Access Productions, our greatest joy is our three beautiful boys Tyler (9), Toby (5) and Malakai (2).
All Access was beginning to peek nationally when everything came to an abrupt halt last year. My wife Rebecca has been chronically ill for over 17 years (since the age of 15) and misdiagnosed with Epstein Bar and Chronic Fatigue Syndrome. On February 1, 2008 her symptoms became very severe, she became bed ridden and wheelchair bound and unable to stabilize after months of rest. After visiting several doctors and being tested for many different conditions, she finally received a positive diagnosis for Late Stage Neurological Lyme Disease along with several tick born co-infections. Despite requests from schools across the country for our program we had to put everything on hold due to the severity of her illness and the intensive therapies that were now a daily part of our lives.
Lyme Disease is very curable in its early stage but having been misdiagnosed for over 17 years the bacteria has taken over Rebecca's body and caused many neurological and debilitating symptoms which can take years of treatment to recover from. Rebecca has been so committed to nutrition and following doctors orders that she is progressing but still suffers from severe weakness, inability to walk at times, debilitating pain in her bones, muscles and joints, severe muscle spasms, tingling and numbness, shortness of breath, loss of memory and other mental fatigue (to name a few of her symptoms) and a basic inability most days to take care of herself and her children. This is an improvement from being totally bedridden earlier this year. We are grateful for the progress but know we have to keep fighting!! Without treatment this disease has taken many lives and Rebecca is in the latest stage of the disease! But we have HOPE...
Rebecca is seeing one of the best specialists for Lyme Disease in the country right here in NYC. This Specialist feels with continued treatment she should be able to go into full remission in the next year. Of course the need for ongoing attention to a healthy life style will be essential throughout her life to keep the disease in remission. Her greatest desire is to be a fully functioning wife and mother once again and to see All Access back in our Nation’s schools by 2011!!
This brings me to the purpose of our letter. We have been under tremendous financial strain since her diagnosis as most of her therapy is not covered by our medical insurance through NY State Medicaid program. All employees of YWAM are unpaid volunteers who rely on donations from friends, families, churches and businesses for our living expenses. We live on a very fixed and small monthly budget but have been willing to do so in order to commit our lives to our passion of helping America’s youth. We have struggled through the years but have always met our monthly bills until these additional medical expenses became overwhelming. I have endeavored to take some side jobs but have been unable to do much as I have become the daily, full time caregiver for my wife and three small children for the last year.
Currently our monthly medical bills are totaling over 100% of our income at $3,500 a month. We had a neighbor plan a community fundraiser for us last November, and a few churches have donated funds to us to help throughout the year. We have been so blessed by the kindness and giving of our community and realize we would not have made it through this year without them! Even with this assistance however, we have still accumulated almost $10,000 worth of medical debt over this last year. This debt is increasing monthly as Rebecca's therapy and doctor visits are ongoing. It is imperative to Rebecca's full recovery that she continue with ALL of these treatments!!
If you have any questions, please feel free to contact me on my cell phone at 631-697-1299. You can also contact me by email at dburd@ywam-ny.com.
To learn more about our family and ministry you can check out our website at www.theburdfamily.com.
As a husband and father I am trusting in God for his provision and healing for my wife and family. I am so grateful for your time and kind consideration in assisting our family! May God richly bless you!
In His Service,
Daniel Burd
Dan and I have had to face both these fears since February '08. The following is a letter written on behalf of my husband about our journey and the current financial MOUNTAIN we face...would you take the time to read it (even if you know my story) and possibly consider what you may be able to do to help us "get to the top":
LETTER FROM MY HUBBY...
Hello, my name is Daniel Burd. I appreciate you taking the time to read this letter and consider my family’s current situation and our need for assistance. Let me begin by telling you a little about our family and our full time volunteer work.
My wife, Rebecca, and I have been full time, unsalaried volunteers for a non-profit missions organization called Youth With A Mission (YWAM) since 1995. We are located on the Smithtown campus right here on Long Island.
Over the last 14 years we have co-founded and directed a ministry within YWAM called All Access Productions. We work in public and private schools across the Nation presenting a modern day musical called "No More Victims", confronting the epidemic of bullying and violence within our schools. Our mission is to teach young people to “Speak Life” to one another to stop the violence before it starts, ending the pattern of violent school shootings. We want to see young people attend school without the fear of being bullied, or even worse, the victim of an act of violence.
Our program has been featured at several State Safety Academy Conferences and was highlighted last fall at the International Bullying Prevention Awareness Conference. It has been said by the professionals in the field of education that "No More Victims" is "the most effective anti-violence school assembly program available to schools" today. We have seen over 200,000 young people over the last 14 years in hundreds of schools across the country. You can learn more about our program at www.allaccessny.org.
Along with being the Directors for All Access Productions, our greatest joy is our three beautiful boys Tyler (9), Toby (5) and Malakai (2).
All Access was beginning to peek nationally when everything came to an abrupt halt last year. My wife Rebecca has been chronically ill for over 17 years (since the age of 15) and misdiagnosed with Epstein Bar and Chronic Fatigue Syndrome. On February 1, 2008 her symptoms became very severe, she became bed ridden and wheelchair bound and unable to stabilize after months of rest. After visiting several doctors and being tested for many different conditions, she finally received a positive diagnosis for Late Stage Neurological Lyme Disease along with several tick born co-infections. Despite requests from schools across the country for our program we had to put everything on hold due to the severity of her illness and the intensive therapies that were now a daily part of our lives.
Lyme Disease is very curable in its early stage but having been misdiagnosed for over 17 years the bacteria has taken over Rebecca's body and caused many neurological and debilitating symptoms which can take years of treatment to recover from. Rebecca has been so committed to nutrition and following doctors orders that she is progressing but still suffers from severe weakness, inability to walk at times, debilitating pain in her bones, muscles and joints, severe muscle spasms, tingling and numbness, shortness of breath, loss of memory and other mental fatigue (to name a few of her symptoms) and a basic inability most days to take care of herself and her children. This is an improvement from being totally bedridden earlier this year. We are grateful for the progress but know we have to keep fighting!! Without treatment this disease has taken many lives and Rebecca is in the latest stage of the disease! But we have HOPE...
Rebecca is seeing one of the best specialists for Lyme Disease in the country right here in NYC. This Specialist feels with continued treatment she should be able to go into full remission in the next year. Of course the need for ongoing attention to a healthy life style will be essential throughout her life to keep the disease in remission. Her greatest desire is to be a fully functioning wife and mother once again and to see All Access back in our Nation’s schools by 2011!!
This brings me to the purpose of our letter. We have been under tremendous financial strain since her diagnosis as most of her therapy is not covered by our medical insurance through NY State Medicaid program. All employees of YWAM are unpaid volunteers who rely on donations from friends, families, churches and businesses for our living expenses. We live on a very fixed and small monthly budget but have been willing to do so in order to commit our lives to our passion of helping America’s youth. We have struggled through the years but have always met our monthly bills until these additional medical expenses became overwhelming. I have endeavored to take some side jobs but have been unable to do much as I have become the daily, full time caregiver for my wife and three small children for the last year.
Currently our monthly medical bills are totaling over 100% of our income at $3,500 a month. We had a neighbor plan a community fundraiser for us last November, and a few churches have donated funds to us to help throughout the year. We have been so blessed by the kindness and giving of our community and realize we would not have made it through this year without them! Even with this assistance however, we have still accumulated almost $10,000 worth of medical debt over this last year. This debt is increasing monthly as Rebecca's therapy and doctor visits are ongoing. It is imperative to Rebecca's full recovery that she continue with ALL of these treatments!!
We would humbly ask if you might consider a gift to our family towards our Medical Debt and in addition may we ask that you may consider supporting our family as missionaries through 2010. This would help to enable us to cover our monthly medical bills and prevent further debt during this coming year. Other than our outstanding medical expenses we have no other financial debt at this time. With your support we will be better able to keep our commitment to living debt free!
If you have any questions, please feel free to contact me on my cell phone at 631-697-1299. You can also contact me by email at dburd@ywam-ny.com.
To learn more about our family and ministry you can check out our website at www.theburdfamily.com.
As a husband and father I am trusting in God for his provision and healing for my wife and family. I am so grateful for your time and kind consideration in assisting our family! May God richly bless you!
In His Service,
Daniel Burd
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