third denial...and finding "me" again
Even typing that title makes me cringe. I called our insurance pharmaceutical appeals department yesterday and unfortunately received the news that we were denied for the third time in our request for coverage of IVIG.
Three strikes, we're out. The insurance company told me that there is a "second appeal" process, but it has to be instigated by our physician. I called Dr G's nurse yesterday and left her a detailed message, including our recent relapse and bout with aggression last week. I haven't received a return phone call yet, but I will wait in anticipation to hear their plan to refute the decision.
Every other post, I have made myself write, "KEEP THE FAITH." In writing this blog, I have realized the power of a journal. Not only do I have an online collection of every procedure, every appointment, and most importantly all those special memories over the past two years, but it has served as my counseling session. When I write, I am able to freely say the words that don't always come so easy in conversations. And today, keeping the faith is a struggle, to say the least.
Peter and I have felt that if IVIG was the answer, it would be clear to us. We felt that a financial burden lifted from our shoulders would be the sign that it was the route we were to take. Now that we have been denied not once, but three times, I am having a hard time reading the signs.
The last two weeks of regression fueled the fire to push for IVIG. I have seen Hunter go from over 120 episodes of non-compliance in a three hour period to a child that complies with every task from taking anti-inflammatories. I have seen the science to know that this procedure, in theory, would be our answer.
Not the answer to achieve 100% recovery, but a chance at living a life with more than just glimpses of Hunter pre-infection.
I connected with a woman, who is a mutual acquaintance of the director at our preschool. I don't ever doubt that God plays a role in these conversations, friendships, and connections. Her son was diagnosed with PANDAS several years after initial onset, and with antibiotics and 2 IVIG's, they have their son back (90%). Somehow our conversation turned to our support networks, and she told me how hard it is to find friends who understand the depth of what our families actually go through daily. I had to disagree and tell her that one of the biggest blessings throughout this journey was finding out who truly stood by our side, friends and family included. Those who have been there pre-infection are mostly still there- I have had to unfortunately devote less time to keeping in contact with my high school and college friends, just due to the daily toll the therapy schedules, appointments, and stress of the situation brings to our lives. Some completely understand, and others might not have cut me as much slack for not being able to return a phone call. Even my own brother, when he came for a visit last year, told me after driving around with me to countless appointments, therapy sessions, and activities, "Wow...I can see now why you can't call me back right away!"
I told this fellow PANDAS mom that the relationships I struggle with the most are the new ones...I find myself having trouble making conversation, partly due to the fact that I am probably stressed and sleep deprived, but also because I don't want to ever overtake the conversation with our struggles. No one wants to be the Debbie Downer, and that is just not me. I have had to work on talking about myself to others, because it never came very easy to me. I was told by many that I am a great listener, and I feel like that trait has taken a beating over the years. I want to be that great listener, that great friend, the one who lives to be in the moment of a big party. This is strange for me to write about, but I was voted homecoming queen in my high school. I never really understood why I won. I wasn't part of the "popular" crowd- I was an athlete, but not the scholarship-type. I was involved in many organizations, show choir, drama, volunteering opportunities, and in the "smart kid classes." I was friends with people from all of the different groups. One friend in my homeroom, I can remember the moment so vividly...her running up to me after my name was announced, and just screaming, jumping up and down. "You deserve this so much!!" She told me later that I won because I was nice to everyone...I made time for each person...and I was a good friend.
One of my friends here told me last week that God used me to make a connection with her and another mom going through a difficult time in their lives. She told me,"God uses you all the time to build others up. You are a facilitator and a cheerleader. He moves through you. Everything you do has a purpose and you are exactly where he wants you to be. His plans for you and your family are perfect and so is His timing. You influence me and encourage me without even realizing it."
Hearing those words, I want to be that person again. Autism has overtaken so much of our lives and I find myself at the end of most days to be tired, worn, and sometimes (ok, often) cranky. I don't like raising my voice at our children, losing patience with my husband (LOVE YOU PETER), and feeling like a failure in many aspects.
So I need to let this decision rest. I need to accept this denial, even if I truly hope it may not be the end of the road... but at this moment in time, I have to be OK with it. Not just for me, but for the well-being of our family and friends. It's time to live in the moment and stop stressing about the future. It's time to cherish every milestone, create happiness, be my best-self, believe in miracles, and remember to breathe.
You tube has suggestions for videos based on your past searches- never knew this before tonight. I clicked on you tube to listen to a song (which I often do while I write). There was a suggestion for Laura Story tonight, called "I Can Just Be Me."
I don't make these things up. I promise. I hope anyone who follows our blog and at some point has doubted the power of our God (we have all been there- can't say I don't have anger once in awhile), well, you have to know and believe that this is the plan. It is His plan. And as hard as I try, I can't change it.
Amidst the anguish, the trials, the questions, the uncertainties, and the hardships.....
find yourself.
"I Can Just Be Me"- Laura Story
http://www.youtube.com/watch?v=0VRUU8UBXCk
I've been doing all that I can to hold it all together piece by piece
I've been feeling like a failure, trying to be braver than I could ever be.
It's just not me.
So be my healer, be my comfort, be my peace.
Cause I can be broken, I can be needy, Lord, I need you now to be, be my God,
so I can just be me.
I've been living like an orphan, trying to belong here, but it's just not my home.
I've been holding on so tightly to all the things that I think satisfy my soul, but I'm letting go.
So be my father, my mighty warrior, be my king.
Cause I can be scattered, frail and shattered, Lord, I need you now to be,
be my God, so I can just be me.
Cause I was lost, in this dark world, till I was finally found in you.
So now I'm needing, desperately pleading, Oh Lord, be all to me.
Be my savior, be my lifeline, won't you be my everything?
Cause I'm so tired, of trying to be someone, I was never meant to be.
Be my God, please be my God, be my God, so I can just be me.
So I can just be me. I can just be me.
Three strikes, we're out. The insurance company told me that there is a "second appeal" process, but it has to be instigated by our physician. I called Dr G's nurse yesterday and left her a detailed message, including our recent relapse and bout with aggression last week. I haven't received a return phone call yet, but I will wait in anticipation to hear their plan to refute the decision.
Every other post, I have made myself write, "KEEP THE FAITH." In writing this blog, I have realized the power of a journal. Not only do I have an online collection of every procedure, every appointment, and most importantly all those special memories over the past two years, but it has served as my counseling session. When I write, I am able to freely say the words that don't always come so easy in conversations. And today, keeping the faith is a struggle, to say the least.
Peter and I have felt that if IVIG was the answer, it would be clear to us. We felt that a financial burden lifted from our shoulders would be the sign that it was the route we were to take. Now that we have been denied not once, but three times, I am having a hard time reading the signs.
The last two weeks of regression fueled the fire to push for IVIG. I have seen Hunter go from over 120 episodes of non-compliance in a three hour period to a child that complies with every task from taking anti-inflammatories. I have seen the science to know that this procedure, in theory, would be our answer.
Not the answer to achieve 100% recovery, but a chance at living a life with more than just glimpses of Hunter pre-infection.
I connected with a woman, who is a mutual acquaintance of the director at our preschool. I don't ever doubt that God plays a role in these conversations, friendships, and connections. Her son was diagnosed with PANDAS several years after initial onset, and with antibiotics and 2 IVIG's, they have their son back (90%). Somehow our conversation turned to our support networks, and she told me how hard it is to find friends who understand the depth of what our families actually go through daily. I had to disagree and tell her that one of the biggest blessings throughout this journey was finding out who truly stood by our side, friends and family included. Those who have been there pre-infection are mostly still there- I have had to unfortunately devote less time to keeping in contact with my high school and college friends, just due to the daily toll the therapy schedules, appointments, and stress of the situation brings to our lives. Some completely understand, and others might not have cut me as much slack for not being able to return a phone call. Even my own brother, when he came for a visit last year, told me after driving around with me to countless appointments, therapy sessions, and activities, "Wow...I can see now why you can't call me back right away!"
I told this fellow PANDAS mom that the relationships I struggle with the most are the new ones...I find myself having trouble making conversation, partly due to the fact that I am probably stressed and sleep deprived, but also because I don't want to ever overtake the conversation with our struggles. No one wants to be the Debbie Downer, and that is just not me. I have had to work on talking about myself to others, because it never came very easy to me. I was told by many that I am a great listener, and I feel like that trait has taken a beating over the years. I want to be that great listener, that great friend, the one who lives to be in the moment of a big party. This is strange for me to write about, but I was voted homecoming queen in my high school. I never really understood why I won. I wasn't part of the "popular" crowd- I was an athlete, but not the scholarship-type. I was involved in many organizations, show choir, drama, volunteering opportunities, and in the "smart kid classes." I was friends with people from all of the different groups. One friend in my homeroom, I can remember the moment so vividly...her running up to me after my name was announced, and just screaming, jumping up and down. "You deserve this so much!!" She told me later that I won because I was nice to everyone...I made time for each person...and I was a good friend.
One of my friends here told me last week that God used me to make a connection with her and another mom going through a difficult time in their lives. She told me,"God uses you all the time to build others up. You are a facilitator and a cheerleader. He moves through you. Everything you do has a purpose and you are exactly where he wants you to be. His plans for you and your family are perfect and so is His timing. You influence me and encourage me without even realizing it."
Hearing those words, I want to be that person again. Autism has overtaken so much of our lives and I find myself at the end of most days to be tired, worn, and sometimes (ok, often) cranky. I don't like raising my voice at our children, losing patience with my husband (LOVE YOU PETER), and feeling like a failure in many aspects.
So I need to let this decision rest. I need to accept this denial, even if I truly hope it may not be the end of the road... but at this moment in time, I have to be OK with it. Not just for me, but for the well-being of our family and friends. It's time to live in the moment and stop stressing about the future. It's time to cherish every milestone, create happiness, be my best-self, believe in miracles, and remember to breathe.
You tube has suggestions for videos based on your past searches- never knew this before tonight. I clicked on you tube to listen to a song (which I often do while I write). There was a suggestion for Laura Story tonight, called "I Can Just Be Me."
I don't make these things up. I promise. I hope anyone who follows our blog and at some point has doubted the power of our God (we have all been there- can't say I don't have anger once in awhile), well, you have to know and believe that this is the plan. It is His plan. And as hard as I try, I can't change it.
Amidst the anguish, the trials, the questions, the uncertainties, and the hardships.....
find yourself.
"I Can Just Be Me"- Laura Story
http://www.youtube.com/watch?v=0VRUU8UBXCk
I've been doing all that I can to hold it all together piece by piece
I've been feeling like a failure, trying to be braver than I could ever be.
It's just not me.
So be my healer, be my comfort, be my peace.
Cause I can be broken, I can be needy, Lord, I need you now to be, be my God,
so I can just be me.
I've been living like an orphan, trying to belong here, but it's just not my home.
I've been holding on so tightly to all the things that I think satisfy my soul, but I'm letting go.
So be my father, my mighty warrior, be my king.
Cause I can be scattered, frail and shattered, Lord, I need you now to be,
be my God, so I can just be me.
Cause I was lost, in this dark world, till I was finally found in you.
So now I'm needing, desperately pleading, Oh Lord, be all to me.
Be my savior, be my lifeline, won't you be my everything?
Cause I'm so tired, of trying to be someone, I was never meant to be.
Be my God, please be my God, be my God, so I can just be me.
So I can just be me. I can just be me.
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