Posts
The Things People Take for Granted
This has been a tough week physically. I was not even able to make it through the complete church service last week. My bones ache and my muscles feel like they are burning from the inside out. There is a creepy crawly feeling like their are ants crawling just under the surface of my skin and I find myself swatting at myself thinking there is something crawling on me. The doctor prescribed pain killers thinking this is just some kind of strange nerve pain. But over all, nothing seems to be working. I was feeling particularly bad one day so I went to go take a nap. By the time I laid down I realized someone had left the TV on in my bedroom and it was on Divorce Court. It would've taken too much energy and pain to get up and turn the TV off so I laid there and watched this farce of a couple lay out all of their dirty laundry before a judge about why they had irreconciliable differences.
The reason for the divorce? This woman was a self proclaimed DIVA and said that her husband stopped telling her how pretty she was after they got married. So she had an affair so some other man could tell her how pretty she was.
I would have rolled my eyes if wouldn't have hurt so bad. All this to say that as I watched the pettiness of this unfold I reminisced in my own mind back to my own wedding day and the vows that were spoken. Back to the days when we were young, naive, and newly in love. The days when we thought love would conquer anything. I remembered how sick I was on our wedding day. I was running a high fever and taking triple antibiotics for a bad case of bronchitis. I was hardly lucid due to the antihistimines and I vaguely remembering my dad teasing me saying that I had better know what I doing because once the preacher pronounced us man and wife that he was not going to take me back if later I said I was on medicaltion and didn't know what I was doing! It was a done deal as far as dad was concerned! Once married, NO RETURNS!
I remember a specific part in our wedding video during the vows when it came to "in sickness and in health" that both Brad and I could be visibly seen trying not to laugh...as my fever was high and my cheeks were flushed and felt on the verge of passing out.
I look back to that time of committing ourselves one to another before God, family and friends and I feel very grateful for the integrity of the man who has stood by my side in sickness and in health. Little did we know back then that we would see so much testing on that particular vow! But if I may...let me brag about the man of my dreams who has honored his word at that marriage altar.
In sickness and in health...there have been days in this illness where I was too sick to even shower because the water hitting my skin would feel like razors tearing at my flesh. Household chores have been delegated out to the kids and some days it was all I could do to put a frozen pizza in the oven.
Recently my mom has come to live with us and has been a blessing beyond belief in helping with the running of the house. My family now has clean clothes again!
There have been some days that I was quite grateful that my job is mostly computer based and can be done from home. I cant imagine where I would be if I had to get dressed and go to a traditional job on a daily basis. Hopefully this new home based business will start to show a profit too so I can help with the growing medical bills.
I know there have been days where I have looked like a frightening sight to behold as I hobble and limp just to get from one place to another in the house but each and every day Brad still comes home and sits on the side of our bed and still hugs and kisses me--and tells me how much he loves me.
I know it is not beauty that he is seeing. It is not even gratitude for the acts of service I do...because I can't do much of that any more either...it is simply that he loves me, and despite all the health issues, he still likes knowing that I am around.
I think about how petty the couple in the divorce court seemed. Then I realize how truly blessed I am to have a husband who can see past the the broken external physique and sing a song to me about having a "beautiful soul".
He's the best thing that has ever happened to me ...next to knowing Christ.
It is comforting to know that I have Brad by my side as we stand and believe for healing...
and not just Brad, but a praying church.
I look forward to standing completely healed on the other side of this trial of health! I look forward to the day that Brad and I will once again be able to hike and climb the hills at the lake as we did in college.
But until that day, I just love that he still comes home and searches me out for a hug and a kiss...and a song about a "beautiful soul".
He can sure make a sick gal feel a lot better!
I'll forever be a "gratefulwife2brad"...
Love, Dawn
Saturday, May 27, 2006
Friday, May 19, 2006
It's a Matter of Honor
Strength and Dignity are her Clothing; She Smiles at the Future
Tonight was Laura's time to shine as we refelected on the end of the kid's first year in public school. Laura was inducted into the National Junior Honor Society. She was chosen to be a part of the society based on her achievements in academics, leadership, character and service/citizenship.
I still marvel when I look at her when I remember all the medical community spoke over her when she was born. Just 8 days after she was born she was looking severely jaundiced so I took her into the hospital where she was admitted to the NICU. THe doctors could not find the source of her jaundice and told us her biliruben levels were through the roof. After several hours of checking her levels while under UV therapy her levels were continuing to climb. We were told she would need a total and complete blood transfusion if she were to survive this ordeal.
We called our church and began a prayer chain for Laura. The doctors told us we needed to go ahead and call family together and begin to make final arrangements because they did not feel that Laura would survive the night. My blood ran cold and my spirit completely REJECTED what the doctor was telling us. I remember telling him, "You don't know our God!"...and we continued to pray. Within the hour they came and told us that her biliruben levels had taken an amazing turn and started to drop--so "for now" they said we were out of the woods for needing the transfusion.
As God would have it, the next few days continued to confuse and confound the medical professionals, while the church continued to pray.
I was just 8 days out from having a c-section with her and Brad & I refused to leave the hospital. We literally had blankets and pillows and slept on the floor of the ICU waiting room so that we could go into the NICU every 3-4 hours during the night...and they bent the rules several times on the night they told us she would not make it through the night and we were at that isolet almost every minute of that night...rocking her , touching her, singing over her and praying.
The next few days brought improvement with no "medical" explanation. We continued to tell them we had a praying church. Within a week of being admitted, we were going home with a perfectly health child and doctors scratching their heads! They did warn us , though, that since her biliruben levels had been so elevated for so long that we should be braced for permanent brain damage, hearing loss and severe learning disabilities. They assured us she would never be a "normal" child developmentally.
It was not until her one year old check up that I b egan to question the doctors further about her "developmental delays" that were diagnosed at birth. The doctor looked confused. This was a new doc in pediatrics and not the NICU doctor who had seen her. So he flipped through her chart and said "THIS is the baby they still talk about in the NICU?" It was then that the doctor explained that Laura had the second highest biliruben levels of a child that survived ever recorded in the 100 year history of Scott & White Hospital and she was the ONLY one who did not have permanent brain damage and severe disability as a result. I was thankful this was told to me a year AFTER the fact, because that kind of info just might have done me in during the midst of the crisis!!
So here we are 12 years later at her induction into the National Junior Honor Society and I am still amazed at the mighty hand of God that has been upon her since birth! The doctors spoke death and severe brain damage over her...but God used her for HIS GLORY. Not only did Laura NOT have severe learning disabilities, she began reading 2 months after she turned 4 years old. By age 5 she was reading the unabridged classics like The Secret Garden and Little Women...and 5 was also the age she fell in love with Nancy Drew! She was an independant reader of chapter books by age 5!
We homeschooled for 8 years and when she went to public school last year they tested her and then advanced her a full grade level. So not only has she excelled in academics and character, she is still a full year younger than her grade level peers.
She is truly a young woman of great integrity and a love for her Lord Jesus. She is a true joy in my life. I used to wonder where she got her strong competitive spirit that could conquer anything...and now I wonder if it could be GOD GIVEN...to teach ME something.
Laura was combating the medical garbage that was spoken over her life even before she was a month old...and she has been a victorious warrior ever since. I could learn a thing or two from this honor student!!
She is my hero!! Her name "Laura Ashley" actually means ABUNDANT VICTORIES...and she has truly lived up to her name sake!
From her grateful mom,
Dawn
Tonight was Laura's time to shine as we refelected on the end of the kid's first year in public school. Laura was inducted into the National Junior Honor Society. She was chosen to be a part of the society based on her achievements in academics, leadership, character and service/citizenship.
I still marvel when I look at her when I remember all the medical community spoke over her when she was born. Just 8 days after she was born she was looking severely jaundiced so I took her into the hospital where she was admitted to the NICU. THe doctors could not find the source of her jaundice and told us her biliruben levels were through the roof. After several hours of checking her levels while under UV therapy her levels were continuing to climb. We were told she would need a total and complete blood transfusion if she were to survive this ordeal.
We called our church and began a prayer chain for Laura. The doctors told us we needed to go ahead and call family together and begin to make final arrangements because they did not feel that Laura would survive the night. My blood ran cold and my spirit completely REJECTED what the doctor was telling us. I remember telling him, "You don't know our God!"...and we continued to pray. Within the hour they came and told us that her biliruben levels had taken an amazing turn and started to drop--so "for now" they said we were out of the woods for needing the transfusion.
As God would have it, the next few days continued to confuse and confound the medical professionals, while the church continued to pray.
I was just 8 days out from having a c-section with her and Brad & I refused to leave the hospital. We literally had blankets and pillows and slept on the floor of the ICU waiting room so that we could go into the NICU every 3-4 hours during the night...and they bent the rules several times on the night they told us she would not make it through the night and we were at that isolet almost every minute of that night...rocking her , touching her, singing over her and praying.
The next few days brought improvement with no "medical" explanation. We continued to tell them we had a praying church. Within a week of being admitted, we were going home with a perfectly health child and doctors scratching their heads! They did warn us , though, that since her biliruben levels had been so elevated for so long that we should be braced for permanent brain damage, hearing loss and severe learning disabilities. They assured us she would never be a "normal" child developmentally.
It was not until her one year old check up that I b egan to question the doctors further about her "developmental delays" that were diagnosed at birth. The doctor looked confused. This was a new doc in pediatrics and not the NICU doctor who had seen her. So he flipped through her chart and said "THIS is the baby they still talk about in the NICU?" It was then that the doctor explained that Laura had the second highest biliruben levels of a child that survived ever recorded in the 100 year history of Scott & White Hospital and she was the ONLY one who did not have permanent brain damage and severe disability as a result. I was thankful this was told to me a year AFTER the fact, because that kind of info just might have done me in during the midst of the crisis!!
So here we are 12 years later at her induction into the National Junior Honor Society and I am still amazed at the mighty hand of God that has been upon her since birth! The doctors spoke death and severe brain damage over her...but God used her for HIS GLORY. Not only did Laura NOT have severe learning disabilities, she began reading 2 months after she turned 4 years old. By age 5 she was reading the unabridged classics like The Secret Garden and Little Women...and 5 was also the age she fell in love with Nancy Drew! She was an independant reader of chapter books by age 5!We homeschooled for 8 years and when she went to public school last year they tested her and then advanced her a full grade level. So not only has she excelled in academics and character, she is still a full year younger than her grade level peers.
She is truly a young woman of great integrity and a love for her Lord Jesus. She is a true joy in my life. I used to wonder where she got her strong competitive spirit that could conquer anything...and now I wonder if it could be GOD GIVEN...to teach ME something.
Laura was combating the medical garbage that was spoken over her life even before she was a month old...and she has been a victorious warrior ever since. I could learn a thing or two from this honor student!!
She is my hero!! Her name "Laura Ashley" actually means ABUNDANT VICTORIES...and she has truly lived up to her name sake!
From her grateful mom,
Dawn
Friday, May 12, 2006
Let Go and Let God
Surviving the Path You Never Thought You'd Walk
It has been just over a year now that we have stopped homeschooling the kids. Chris and Laura are about to complete their first full year of public school. Joshua just had his award ceremony today from his year of homeschool with one of my closest friends.
This is not the path I would have chosen for myself. I had dreams of homeschooling the kids through high school, but as my health kept taking turns for the worse I knew I was left with little other choice than to put the kids in school. I needed help. I had to admit my weakness. I had to trust that God was still sovreign and this was a time in my life where my kids needed more than I could give them and I needed time to rest and heal without the demands of homeschooling.
Still, this is a path I never dreamed I would walk...but here I am, and I have survived!! The kids have survived!! And we have "miles to go before we sleep" as far as this journey to health goes...but we are marching FORWARD and ONWARD!
As I have been looking at the achievement awards the kids have been bringing home from school and realizing how well they did, I thought back to a poem I had memorized as a child called Broken Dreams:
For the first time I realized.... I DID IT!! I LET GO!!!
I let go of the idea that I was less of a mom if someone else taught my children. I let go of the idea that my kids were not capable of dealing with the public school arena. Then I fully grasped hold of the truth of God's Word, "Wherever you go, there I am with you." I have been simply amazed with the results of letting go and simply trusting God to watch over my children through our current circumstances.
Just this week, Chris and Laura sat in the living room floor as we went through my back pack (still packed) from when I went to CFNI. They were wanting to read some of the assigned books from the Creation Science class I had taken because they wanted to be able to have a deeper conversation of the origins of the earth with their science teachers. These are kids who have owned their own faith and are actively looking for ways to share it in their school environment in a respectful way.
Since the kids have gone to public school we have met our neighbors! Our house has become a magnet for every kid in the neighborhood. One kid walked through the house the other day and said "HI MOM!" and I had to do a double take! Wait a minute! I did not give birth to that kid! So aparantly our family has been adopted as the house to hang out and play. This never would have happened when we homeschooled. In fact I could have told you 10 ways to Sunday how those hoodlums were going to hell in a handbasket and I would not have them being a bad influence on my kids...God forgive me!
But you see, I let go and let GOD! I have 3 kids but on any given youth night or 5th quarter party I am loading up my van with 8 kids...5 extra who want to go to church with us! Brad got a call from one of the kid's parents last week asking us about information about our church and they are planning on coming to visit too. I am watching my children mature into their faith and take an active role of evangelism that they never had to before...and I am learning that those little neighborhood hoodlums really have some issues but more than anything they just want to be with a FAMILY. I am not sure all the details of all their lives...but each day we learn a little more...and we pray a little more...because we were willing to let go and let God. We were willing to travel a road we said we'd never walk. Never say never!
So I must brag on my children and all they have accomplished their first full year without mom as their teacher. I am so proud of them I could bust! I know that those 8 years of homeschooling were very foundational to who they are and now I am so excited to see them fly on their own as they grow and mature into wonderful young adults!
Christopher, age 14, earned the Outstanding Student in History Award this year. This really came as no suprise to us from the kid who read a full length novel on Sgt York when he was in 4th grade...300+ pages. This is the same child who wanted to talk to Colin Powell during the 911 attacks and explain what type of strategical plans needed to be made to effectively launch attack on the enemy! Yes...he has always been a history buff!
Joshua did amazingly well with "Mrs Leslie" this year. You know you have a true friend when they volunteer to make the commitment to homeschool your child for you when you are too sick to do it yourself! Joshua flourished like a flower under Mrs Leslie's teaching this year. Josh got awards this year for Outstanding Student in Spelling and Major Strides in Multiplication! I'd have been lost without her! We tried putting Josh in school last year but it was not working out for the school or for us. But it is amazing to see how far he has come this year with Leslie. It did my heart wonders to have her take my son in and treat him like one of her own, all the while I had another "friend" who told me how I had abdicated my responsibility as a parent. After struggling with this illness, I tell you which one I call FRIEND!! It is one thing to recognize a friend's need, it is a whole different thing to WALK THROUGH THE NEED WITH THEM and be part of the SOLUTION TO THE NEED!
You will have to wait for pictures for Laura for next weekend. We just got the letter that she was accepted into the National Junior Honor Society for excellence in academics, character, leadership and service. She is going on a trip to Six Flags with her choir tomorrow. This is their end of the year celebration for making a 2 in UIL competition this year!
You will never know the full beauty of a bird while it cuddles in your hand. You only see its full MAJESTY when it flies!!!
My babies....they are flying!! And it is beautiful to behold!!
Now excuse me while I go find a kleenex! LOL!
Dawn
It has been just over a year now that we have stopped homeschooling the kids. Chris and Laura are about to complete their first full year of public school. Joshua just had his award ceremony today from his year of homeschool with one of my closest friends.
This is not the path I would have chosen for myself. I had dreams of homeschooling the kids through high school, but as my health kept taking turns for the worse I knew I was left with little other choice than to put the kids in school. I needed help. I had to admit my weakness. I had to trust that God was still sovreign and this was a time in my life where my kids needed more than I could give them and I needed time to rest and heal without the demands of homeschooling.
Still, this is a path I never dreamed I would walk...but here I am, and I have survived!! The kids have survived!! And we have "miles to go before we sleep" as far as this journey to health goes...but we are marching FORWARD and ONWARD!
As I have been looking at the achievement awards the kids have been bringing home from school and realizing how well they did, I thought back to a poem I had memorized as a child called Broken Dreams:
As children bring their broken toys
With tears for us to mend,
I brought my broken dreams to God
Because He was my friend.
But then instead of leaving Him
In peace to work alone,
I hung around and tried to help
With ways that were my own.
At last I snatched them back and cried,
"How could you be so slow?"
"My child," He said, "what could I do? You never did let go."
For the first time I realized.... I DID IT!! I LET GO!!!
I let go of the idea that I was less of a mom if someone else taught my children. I let go of the idea that my kids were not capable of dealing with the public school arena. Then I fully grasped hold of the truth of God's Word, "Wherever you go, there I am with you." I have been simply amazed with the results of letting go and simply trusting God to watch over my children through our current circumstances.
Just this week, Chris and Laura sat in the living room floor as we went through my back pack (still packed) from when I went to CFNI. They were wanting to read some of the assigned books from the Creation Science class I had taken because they wanted to be able to have a deeper conversation of the origins of the earth with their science teachers. These are kids who have owned their own faith and are actively looking for ways to share it in their school environment in a respectful way.
Since the kids have gone to public school we have met our neighbors! Our house has become a magnet for every kid in the neighborhood. One kid walked through the house the other day and said "HI MOM!" and I had to do a double take! Wait a minute! I did not give birth to that kid! So aparantly our family has been adopted as the house to hang out and play. This never would have happened when we homeschooled. In fact I could have told you 10 ways to Sunday how those hoodlums were going to hell in a handbasket and I would not have them being a bad influence on my kids...God forgive me!
But you see, I let go and let GOD! I have 3 kids but on any given youth night or 5th quarter party I am loading up my van with 8 kids...5 extra who want to go to church with us! Brad got a call from one of the kid's parents last week asking us about information about our church and they are planning on coming to visit too. I am watching my children mature into their faith and take an active role of evangelism that they never had to before...and I am learning that those little neighborhood hoodlums really have some issues but more than anything they just want to be with a FAMILY. I am not sure all the details of all their lives...but each day we learn a little more...and we pray a little more...because we were willing to let go and let God. We were willing to travel a road we said we'd never walk. Never say never!
So I must brag on my children and all they have accomplished their first full year without mom as their teacher. I am so proud of them I could bust! I know that those 8 years of homeschooling were very foundational to who they are and now I am so excited to see them fly on their own as they grow and mature into wonderful young adults!
Christopher, age 14, earned the Outstanding Student in History Award this year. This really came as no suprise to us from the kid who read a full length novel on Sgt York when he was in 4th grade...300+ pages. This is the same child who wanted to talk to Colin Powell during the 911 attacks and explain what type of strategical plans needed to be made to effectively launch attack on the enemy! Yes...he has always been a history buff!
Joshua did amazingly well with "Mrs Leslie" this year. You know you have a true friend when they volunteer to make the commitment to homeschool your child for you when you are too sick to do it yourself! Joshua flourished like a flower under Mrs Leslie's teaching this year. Josh got awards this year for Outstanding Student in Spelling and Major Strides in Multiplication! I'd have been lost without her! We tried putting Josh in school last year but it was not working out for the school or for us. But it is amazing to see how far he has come this year with Leslie. It did my heart wonders to have her take my son in and treat him like one of her own, all the while I had another "friend" who told me how I had abdicated my responsibility as a parent. After struggling with this illness, I tell you which one I call FRIEND!! It is one thing to recognize a friend's need, it is a whole different thing to WALK THROUGH THE NEED WITH THEM and be part of the SOLUTION TO THE NEED!
You will have to wait for pictures for Laura for next weekend. We just got the letter that she was accepted into the National Junior Honor Society for excellence in academics, character, leadership and service. She is going on a trip to Six Flags with her choir tomorrow. This is their end of the year celebration for making a 2 in UIL competition this year!
You will never know the full beauty of a bird while it cuddles in your hand. You only see its full MAJESTY when it flies!!!
My babies....they are flying!! And it is beautiful to behold!!
Now excuse me while I go find a kleenex! LOL!
Dawn
Saturday, May 06, 2006
God Will Make a Way Where There Seems To Be No Way
IMPORTANT HEALTH UPDATE FOR FAMILY & FRIENDS:
Normally when I hear songs that are decades old, that were once so overplayed that the anoining just left, I get a serious nervous twitch just remembering how the radio overdosed the masses. There were times that I would cringe if I heard one more round of Celebrate Jesus or As a Deer...though lovely songs they are....they were over played until the anointing left.
Tonight, as I was sitting here collecting my thoughts about all that has occurred in the last week and trying to update my family and friends on our health sitaution, one of those songs came across Brad's MP3 player and I crumbled into a puddle of tears feeling as if God just hugged me.
God will make a way where there seems to be no way....well, that is where my hope and faith is at the moment because my medical experiences of the last week have left me wondering if I just need a good lawyer or the business card to reach Dr Jack Kovorkian!...or maybe both?
Let me assure you that I am NOT suicidal, but the physical pain has made me on more than one occasion pray that I could just die and go home to the Lord. But watching Brad be forgetful about taking his meds and supplements makes me think our kids will be left orphans if at least one us doesn't get on top of this illness...because right now it is beating us to a pulp.
The Medical Facts of the Matter:
Our doctor made a mistake...an oversite...and it has cost us dearly. Part of the conditions of long term antibiotic use for chronic infection and inflammation is that monthly labs must be drawn so as to monitor the toxicity level of the body and to watch for liver damage.
Labs are supposed to be drawn at each office visit while on antibiotics. The results of those labs are back in their office within 3 days. My doctor failed to really look over those lab results and just filed them for our next office visit a month later. That was the tragic mistake. Had he looked over those labs he would have noticed that my liver had reached a level of toxicity. But he did not look at them and kept me on the antibiotics (abx for short) for an additional month before he bothered to look at those results...well actually, he did not really look at them then either. He wrote me another prescription for abx. I noticed that the pharmacy had a made a mistake in filling the prescription so they had to call the doctors office to get verification of the instructions...it was at that time when the doctor looked back at my records caught the lab result and called me on my cell phone while I was IN LINE at the pharmacy picking up more abx and he told me to stop immediately!! He said I had a toxic liver and I needed to spend a month detoxing the liver.
Come to find out, while he had me on those abx for an additional month, my liver enzymes had climbed to a level that now I had a new diagnosis of "medicine induced hepatitis"... due to my doctor failing to read my lab report and calling me with the information about my "out of range" lab values.
It would be nice if that were the only medical issue and that it would be cleared up by stopping the meds...but nothing is ever that easy. Our doctor also told us a few months back that both Brad and I have "sticky blood", technically called hypercoagulation. This is caused by long term inflammation and liver damage. He said he did not want to treat this with blood thinners because that would just be a "band aid" for the problem and not address the real issue of the inflammation that is caused by the lyme infection...so he preferred to treat with more abx.
Well, now that he pulled me off the abx I knew the hypercoagulation problem would be more of an issue since there is NOTHING addressing the infection at this point. So I called and asked him to put me on the heparin (blood thinner) for the problem. He simply refused with no explanation other than he was not comfortable prescribing heparin (though several of our support group members who are also his patients are on heparin prescribed by him...go figure!)
So out of desperation I went to my primary care doctor and asked him to give us a second opinion about what our Lyme doc was doing...and to ask about the heparin issue. He said he wanted to speak with our Lyme doctor about going ahead and putting us on IV abx that would not be such an issue on our liver and be more beneficial in the long run towards fighting the infection. So I left his office feeling hopeful that something would get done...that was last Saturday and after 6 phone calls and ER visit later--we still have not received a phone call from our primary doc. I am developing trust issues where our medical professionals are concerned!
Ok...so you noticed that ER visit comment...yes, we had a hospital visit on Monday of this week. By Monday I was having further difficulty with breathing, major headache, difficulty with walking and tingling feeling in my face, arms and legs. So I called my PCP to see what he wanted me to do...never returned my call. I called my Lyme doc twice...never returned my call. So I called my support group leader to ask her what I was supposed to do!! She heard my mom in the back ground asking questions so she asked to speak to my mom directly.
She told my mom to call the doctors office...she put mamma bear in fighting mode and got her motivated! I guess the bad part about feeling so physically ill is that you expect when you call the doctor and tell them you cant breathe or walk well and are tingly all over that if they do not respond it may not be an emergency...so you just wait it out because you don't feel well enough to do much of anything else.
But mamma.....yep, the support group leader told mom to play the mamma card and get on the phone to the office and tell them exactly what she is seeing and what her concern is from a healthy perspective of someone who is observing the situation.
So mom got the nurse on the phone and told her this was not a situation that we could wait for the doctor to call us back after office hours on and then she described the situation with my difficulty breathing, heart racing and the heart contractions...so the nurnse immediately pulled the doctor out of a patient consult and put him on the phone with me. He told me to go to the ER immediately. BTW, my PCP still had not returned a phone call either. I guess I just need to learn to COMPLAIN more and not try to be so patient and feel like I am wasting their time! At leat my mom felt I was worth bothering the dear doctor incessantly, even if I didn't. And that paid off!
The ER visit in a nutshell revealed that I have a slightly enlarged heart and pretty severe hypercoagulation issues and that I was at a high risk for throwing a blood clot and that I needed to get immediate follow up care with my doctor to get put on blood thinners. This was on Monday.
I called both my PCP and Lyme doctor on Tues morning and again in the afternoon when I did not get any return calls. On Wednesday I went back to the hospital to pick up my ER records and faxed them to both doctors...making 2 more calls to each of their offices again on Wed...no return phone calls.
On Thursday I was packing to leave for a medical conference with 6 of the 12 leading Lyme specialists in the country...right here in Dallas! Can you believe that my doctor, who is one of the 12 "specialists" in the US did not even attend the conference??
Come to find out ofter having our support group leader and myself asking some questions of the best leaders in Lyme treatment in the country about our particular protocols with this doctor, not one of them believe he is treating this in a proper manner and his treatment plan is actually contrary to what is making progress in this illness. In fact, his manner of treatment, is actually further driving the Lyme bacteria into the brain because he is neglecting to address the co-infections, which are parasitic in nature, not a bacterial infection like the Lyme bacteria.
The neglect of the co-infections can cause cardiac issues, hypercoagulation issues, and liver issues...everything the ER visit just revealed! I wont even mention the cognitive issues and other neurological issues that we are dealing with on a daily basis. Suffice to say, everything these doctors at the conference were teaching and warning against are exactly the things that are unfolding in our lives...exactly as they described it would if not treated appropriately and aggressively.
So here we are on Saturday evening (ER visit was on Monday) and my PCP still has not called back. On the bright side, my Lyme doc did call on my way out the door to this conference and told me that I should just take a baby aspirin for the clotting issue. I explained that the ER doctor said I needed an aggressive blood thinner. So then he said he felt heparin would be overkill...then I could hear him reading my lab report and shuffeling through the papers I faxed and I told him to look at a particular report...he did and said that he would prescribe heparin only until I could see hematologist...another specialist. (I will explain the insurance situation here below in just a while). Then before we got off the phone he said he did not want to prescribe the heparin (which would have only cost me $10 a month) but wanted to prescribe this more "expensive" brand instead.
So now that I actually had his approval to take a blood thinner, I grabbed the heparin I already had in my closet and packed it with me for my conference. When I got home I called the pharmacy to see how much my script was going to be...granted, it was not earth shattering, but it was 3 times more expensive than the heparin he was going to prescribe to begin with, so I told the pharmacy to call him on monday and tell him I needed the generic brand due to financial reasons.
THE FINANCES OF IT ALL:
In case you are not aware, insurance is a spawn of satan, I am sure of it now! LOL!!
Let me see if I can find an ounce of humor left anywhere in me and see if I can try to make some Lymeaide of this Lyme that has been dealt to us:
Yearly Insurance Premiums: $6,480/yr
PCP in-network Deductible: $3,000/yr
Lyme specialist out-of-network deductible: $6000/yr
Precription deductible: $200/yr
Out of pocket medicine cost: $1800/yr
total yearly out of pocket medical expenses : $17, 480
before our insurance will kick in and pay 80% in network and 70% out of network
And for the record, I love this country too much to renounce my citizenship for the cost of free healthcare.
I guess this is one strange way to "die for your country"...and darn it, I bet they wont even drape the US FLAG that I dearly cherish over my casket either! At this point, I would be happy to give honor to the US flag that was flown upside down UNDER a mexican flag in our own country...at a public school! I would be honored to have that flag, if they would so donate it to my cause!....but I digress....
So pray for us...I think the most tragic thing that happened this week, was not so much the gloom and doom reports we received....but that I lost my ability to laugh...and I have yet to be able to stop the tears and my eyes are swolen near shut...not out of self pity, but that I knew that if ever I lost the ability to LAUGH I would be in bad shape....and I am truly in bad shape now.
Please continue to pray...
Love, Dawn
.
.
PS...I forgot to mention that I actually got to the point of looking up a counselor who is experienced in dealing with Chronic Illness management, so I went to my insurance web page only to find this listed in the EXCLUSIONS for mental health benefits:
HHHmmm...what a bummer for the patient who needs counseling to help deal with the neurological issues from the known physical cause of Lyme Disease....yeah, I'm really bummed out about that one.
God will make a way
Where there seems to be no way
He works in ways we
cannot see
He will make a way for me
He will be my guide
Hold me closely to his side
With love and strength for each new day
He will make a way
Normally when I hear songs that are decades old, that were once so overplayed that the anoining just left, I get a serious nervous twitch just remembering how the radio overdosed the masses. There were times that I would cringe if I heard one more round of Celebrate Jesus or As a Deer...though lovely songs they are....they were over played until the anointing left.
Tonight, as I was sitting here collecting my thoughts about all that has occurred in the last week and trying to update my family and friends on our health sitaution, one of those songs came across Brad's MP3 player and I crumbled into a puddle of tears feeling as if God just hugged me.
God will make a way where there seems to be no way....well, that is where my hope and faith is at the moment because my medical experiences of the last week have left me wondering if I just need a good lawyer or the business card to reach Dr Jack Kovorkian!...or maybe both?
Let me assure you that I am NOT suicidal, but the physical pain has made me on more than one occasion pray that I could just die and go home to the Lord. But watching Brad be forgetful about taking his meds and supplements makes me think our kids will be left orphans if at least one us doesn't get on top of this illness...because right now it is beating us to a pulp.
The Medical Facts of the Matter:
Our doctor made a mistake...an oversite...and it has cost us dearly. Part of the conditions of long term antibiotic use for chronic infection and inflammation is that monthly labs must be drawn so as to monitor the toxicity level of the body and to watch for liver damage.
Labs are supposed to be drawn at each office visit while on antibiotics. The results of those labs are back in their office within 3 days. My doctor failed to really look over those lab results and just filed them for our next office visit a month later. That was the tragic mistake. Had he looked over those labs he would have noticed that my liver had reached a level of toxicity. But he did not look at them and kept me on the antibiotics (abx for short) for an additional month before he bothered to look at those results...well actually, he did not really look at them then either. He wrote me another prescription for abx. I noticed that the pharmacy had a made a mistake in filling the prescription so they had to call the doctors office to get verification of the instructions...it was at that time when the doctor looked back at my records caught the lab result and called me on my cell phone while I was IN LINE at the pharmacy picking up more abx and he told me to stop immediately!! He said I had a toxic liver and I needed to spend a month detoxing the liver.
Come to find out, while he had me on those abx for an additional month, my liver enzymes had climbed to a level that now I had a new diagnosis of "medicine induced hepatitis"... due to my doctor failing to read my lab report and calling me with the information about my "out of range" lab values.
It would be nice if that were the only medical issue and that it would be cleared up by stopping the meds...but nothing is ever that easy. Our doctor also told us a few months back that both Brad and I have "sticky blood", technically called hypercoagulation. This is caused by long term inflammation and liver damage. He said he did not want to treat this with blood thinners because that would just be a "band aid" for the problem and not address the real issue of the inflammation that is caused by the lyme infection...so he preferred to treat with more abx.
Well, now that he pulled me off the abx I knew the hypercoagulation problem would be more of an issue since there is NOTHING addressing the infection at this point. So I called and asked him to put me on the heparin (blood thinner) for the problem. He simply refused with no explanation other than he was not comfortable prescribing heparin (though several of our support group members who are also his patients are on heparin prescribed by him...go figure!)
So out of desperation I went to my primary care doctor and asked him to give us a second opinion about what our Lyme doc was doing...and to ask about the heparin issue. He said he wanted to speak with our Lyme doctor about going ahead and putting us on IV abx that would not be such an issue on our liver and be more beneficial in the long run towards fighting the infection. So I left his office feeling hopeful that something would get done...that was last Saturday and after 6 phone calls and ER visit later--we still have not received a phone call from our primary doc. I am developing trust issues where our medical professionals are concerned!
Ok...so you noticed that ER visit comment...yes, we had a hospital visit on Monday of this week. By Monday I was having further difficulty with breathing, major headache, difficulty with walking and tingling feeling in my face, arms and legs. So I called my PCP to see what he wanted me to do...never returned my call. I called my Lyme doc twice...never returned my call. So I called my support group leader to ask her what I was supposed to do!! She heard my mom in the back ground asking questions so she asked to speak to my mom directly.
She told my mom to call the doctors office...she put mamma bear in fighting mode and got her motivated! I guess the bad part about feeling so physically ill is that you expect when you call the doctor and tell them you cant breathe or walk well and are tingly all over that if they do not respond it may not be an emergency...so you just wait it out because you don't feel well enough to do much of anything else.
But mamma.....yep, the support group leader told mom to play the mamma card and get on the phone to the office and tell them exactly what she is seeing and what her concern is from a healthy perspective of someone who is observing the situation.
So mom got the nurse on the phone and told her this was not a situation that we could wait for the doctor to call us back after office hours on and then she described the situation with my difficulty breathing, heart racing and the heart contractions...so the nurnse immediately pulled the doctor out of a patient consult and put him on the phone with me. He told me to go to the ER immediately. BTW, my PCP still had not returned a phone call either. I guess I just need to learn to COMPLAIN more and not try to be so patient and feel like I am wasting their time! At leat my mom felt I was worth bothering the dear doctor incessantly, even if I didn't. And that paid off!
The ER visit in a nutshell revealed that I have a slightly enlarged heart and pretty severe hypercoagulation issues and that I was at a high risk for throwing a blood clot and that I needed to get immediate follow up care with my doctor to get put on blood thinners. This was on Monday.
I called both my PCP and Lyme doctor on Tues morning and again in the afternoon when I did not get any return calls. On Wednesday I went back to the hospital to pick up my ER records and faxed them to both doctors...making 2 more calls to each of their offices again on Wed...no return phone calls.
On Thursday I was packing to leave for a medical conference with 6 of the 12 leading Lyme specialists in the country...right here in Dallas! Can you believe that my doctor, who is one of the 12 "specialists" in the US did not even attend the conference??
Come to find out ofter having our support group leader and myself asking some questions of the best leaders in Lyme treatment in the country about our particular protocols with this doctor, not one of them believe he is treating this in a proper manner and his treatment plan is actually contrary to what is making progress in this illness. In fact, his manner of treatment, is actually further driving the Lyme bacteria into the brain because he is neglecting to address the co-infections, which are parasitic in nature, not a bacterial infection like the Lyme bacteria.
The neglect of the co-infections can cause cardiac issues, hypercoagulation issues, and liver issues...everything the ER visit just revealed! I wont even mention the cognitive issues and other neurological issues that we are dealing with on a daily basis. Suffice to say, everything these doctors at the conference were teaching and warning against are exactly the things that are unfolding in our lives...exactly as they described it would if not treated appropriately and aggressively.
So here we are on Saturday evening (ER visit was on Monday) and my PCP still has not called back. On the bright side, my Lyme doc did call on my way out the door to this conference and told me that I should just take a baby aspirin for the clotting issue. I explained that the ER doctor said I needed an aggressive blood thinner. So then he said he felt heparin would be overkill...then I could hear him reading my lab report and shuffeling through the papers I faxed and I told him to look at a particular report...he did and said that he would prescribe heparin only until I could see hematologist...another specialist. (I will explain the insurance situation here below in just a while). Then before we got off the phone he said he did not want to prescribe the heparin (which would have only cost me $10 a month) but wanted to prescribe this more "expensive" brand instead.
So now that I actually had his approval to take a blood thinner, I grabbed the heparin I already had in my closet and packed it with me for my conference. When I got home I called the pharmacy to see how much my script was going to be...granted, it was not earth shattering, but it was 3 times more expensive than the heparin he was going to prescribe to begin with, so I told the pharmacy to call him on monday and tell him I needed the generic brand due to financial reasons.
THE FINANCES OF IT ALL:
In case you are not aware, insurance is a spawn of satan, I am sure of it now! LOL!!
Let me see if I can find an ounce of humor left anywhere in me and see if I can try to make some Lymeaide of this Lyme that has been dealt to us:
Yearly Insurance Premiums: $6,480/yr
PCP in-network Deductible: $3,000/yr
Lyme specialist out-of-network deductible: $6000/yr
Precription deductible: $200/yr
Out of pocket medicine cost: $1800/yr
total yearly out of pocket medical expenses : $17, 480
before our insurance will kick in and pay 80% in network and 70% out of network
The cost of watching illegal aliens get FREE full medical benefits at our local county JPS Health Network (when my mom gets no help at all because she makes $100 a month too much for coverage)...PRICELESS.
Okay...I really tried to find the humor here...but I'm still NOT laughing...and I can bet you are not either.
Now here is a sobering thought...our yearly medical expenses exceed our rent/mortgage option by almost $1000 a year!
And for the record, I love this country too much to renounce my citizenship for the cost of free healthcare.
I guess this is one strange way to "die for your country"...and darn it, I bet they wont even drape the US FLAG that I dearly cherish over my casket either! At this point, I would be happy to give honor to the US flag that was flown upside down UNDER a mexican flag in our own country...at a public school! I would be honored to have that flag, if they would so donate it to my cause!....but I digress....
So pray for us...I think the most tragic thing that happened this week, was not so much the gloom and doom reports we received....but that I lost my ability to laugh...and I have yet to be able to stop the tears and my eyes are swolen near shut...not out of self pity, but that I knew that if ever I lost the ability to LAUGH I would be in bad shape....and I am truly in bad shape now.
Please continue to pray...
Love, Dawn
.
.
PS...I forgot to mention that I actually got to the point of looking up a counselor who is experienced in dealing with Chronic Illness management, so I went to my insurance web page only to find this listed in the EXCLUSIONS for mental health benefits:
neurological disorders and other disorders with a known physical basis.
HHHmmm...what a bummer for the patient who needs counseling to help deal with the neurological issues from the known physical cause of Lyme Disease....yeah, I'm really bummed out about that one.
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