All of that stuff that was going on with me and my family a few months back now, is still on our families stage.
Instead of being front and center like it was, it's now just hanging out somewhere stage left.
Mark and I had a long talk on Thursday afternoon, that's why I haven't been around much during the daytime hours recently, not posting to my blogs during the day, only hopping on and off of Twitter every few hours and stuff.
Mark and I, had a long talk about his upcoming MRI on Monday afternoon.
He's really starting to get worried.
Not about the MRI itself, but the results.
He said that if the results say that it's bad and that he will definitely be needing surgery when he's older, he asked if he can tell the doctor to just do the surgery now, while he's young.
I said that of course he can tell the doctor he wants to do it now, but that doesn't mean that the doctor will, but he has every right to make his own medical decisions now, he's legally an adult.
He said that after watching me go through the spine fusion surgeries in my mid 30's, and watching George have spine fusion in his late 50's, after watching the 2 of us suffer through the surgeries, the recoveries, and watching us still be in pain (even years later in my case, George had his surgery just 9 months ago) that he does not, under any circumstance, want to have his surgery in middle age, when the body takes longer to heal, when the body is actually starting to decline in health, he does not want that kind of life for himself, and he does not want his children to have to go through what he and Sebastian have had to go through.
He said that it wasn't my fault, he doesn't blame me for anything, but it really sucks being a kid and having to deal with all of this stuff for the last 10 years of their lives.
He also said that after he has his spine fused, after he's recovered as much as his body will recover, that he wants to go to drug rehab and get off of all of the pain medicines while he's young.
He said that he does not want to be like George and I, having to take pain pills every single day for the rest of his life like we have to.
He said that he believes that the reason we are in so much pain, the reason that our surgeries didn't go so well, the reason that we are still suffering, is because the surgeons waited too long to do it, that if it had been done while we were younger, our lives would be so much different.
I really can't argue with him there.
I have often tried to imagine what my life would be like if the doctors had taken better care of me when I was young and first diagnosed with scoliosis.
I know that back in the early 80's when I was diagnosed, that they were using Harrington rods, and I know that those rods failed after about 10-15 years, but dammit, I would have had 10-15 years of being straight before the rods gave out and needed to be replaced, and when they did, the new titanium rods that I have now, would have been developed and doctors would have begun using them by then.
I would have been ok.
I wouldn't have started suffering from the excruciating backaches and burning pain that has plagued me every single day since I was 19 years old.
Do you have any idea what it has been like to be in pain every single day for 20 years?
There has not been a single day since I was 19, that I've not had pain.
I honestly don't know what it feels like to not have pain, I can't remember what no pain feels like.
Maybe if those damn doctors had done their job and fixed me when I was younger, when I was a teenager, fixed me like another girl in my high school class was, that I wouldn't have become disabled at the age of 31.
At age 31, I was told by 3 orthopedic surgeons and 2 neurosurgeons, that my body couldn't handle the stress anymore, that if I continued to work, continued to put any kind of physical stress on my body any harder than walking at a slow pace, that I would be in a wheelchair within 5 years, and instead of doing spine fusion surgery, they would have been amputating my left leg at the pelvis due to the extensive and non-repairable nerve and blood vessel damage that was running from my lower back all of the way down into my left leg and all of the way to my toes.
All 5 of those surgeons wrote letters to SSDI and told them that I could never work again, and I made and kept copies of all of the letters that every single one of the 21 surgeons and specialists that I saw beginning in July 1998, all the way up until I met my surgeon in November 2005.
I have all of my own medical records, I had to pay to get copies of some of them, but after going from surgeon to surgeon so many times, I just started making my own medical records to bring with me to meet the new surgeons so that time wouldn't be wasted waiting for my records to be sent over to another new surgeon time after time.
It took from April 2001 to December 2005, to get approved for SSDI.
They denied me twice even with an attorney, and that's when I asked each of the 21 surgeons who treated me to write a letter to SSDI explaining how bad my condition was, and they all agreed to do it, they all wrote letters and sent them to my attorney, and almost all of them included their original notes from during the time they treated me and then had to send me to another doctor who "might" have been able to help me.
I really think it was those letters that finally got me approved.
I went off there eh?
Sorry, didn't mean to, it's just that period of time in my life was not only physically challenging, but emotionally challenging.
I wanted to give up fighting every single day, but then I'd look at my boys, and just keep on fighting.
Mark is a fighter, he will fight to get whatever needs to be done, done, but done his way, when he says so, not when a doctor says so.
He does not want to be middle-aged and fighting a battle everyday to just walk from the bed to the couch.
He doesn't want to put his kids through this either.
I asked him if he was really planning on having kids and he said that he was, at least 2 he said.
Then he told me that I need to make my body as strong as I can because the "Gram" is always the kids favorite babysitter.
Ha ha
I said I would do my best, but for now, let's just get through doc appointments and hurricane season, we can talk about me being a grandmother later.
Muuuucch later.
====================
Instead of being front and center like it was, it's now just hanging out somewhere stage left.
Mark and I had a long talk on Thursday afternoon, that's why I haven't been around much during the daytime hours recently, not posting to my blogs during the day, only hopping on and off of Twitter every few hours and stuff.
Mark and I, had a long talk about his upcoming MRI on Monday afternoon.
He's really starting to get worried.
Not about the MRI itself, but the results.
He said that if the results say that it's bad and that he will definitely be needing surgery when he's older, he asked if he can tell the doctor to just do the surgery now, while he's young.
I said that of course he can tell the doctor he wants to do it now, but that doesn't mean that the doctor will, but he has every right to make his own medical decisions now, he's legally an adult.
He said that after watching me go through the spine fusion surgeries in my mid 30's, and watching George have spine fusion in his late 50's, after watching the 2 of us suffer through the surgeries, the recoveries, and watching us still be in pain (even years later in my case, George had his surgery just 9 months ago) that he does not, under any circumstance, want to have his surgery in middle age, when the body takes longer to heal, when the body is actually starting to decline in health, he does not want that kind of life for himself, and he does not want his children to have to go through what he and Sebastian have had to go through.
He said that it wasn't my fault, he doesn't blame me for anything, but it really sucks being a kid and having to deal with all of this stuff for the last 10 years of their lives.
He also said that after he has his spine fused, after he's recovered as much as his body will recover, that he wants to go to drug rehab and get off of all of the pain medicines while he's young.
He said that he does not want to be like George and I, having to take pain pills every single day for the rest of his life like we have to.
He said that he believes that the reason we are in so much pain, the reason that our surgeries didn't go so well, the reason that we are still suffering, is because the surgeons waited too long to do it, that if it had been done while we were younger, our lives would be so much different.
I really can't argue with him there.
I have often tried to imagine what my life would be like if the doctors had taken better care of me when I was young and first diagnosed with scoliosis.
I know that back in the early 80's when I was diagnosed, that they were using Harrington rods, and I know that those rods failed after about 10-15 years, but dammit, I would have had 10-15 years of being straight before the rods gave out and needed to be replaced, and when they did, the new titanium rods that I have now, would have been developed and doctors would have begun using them by then.
I would have been ok.
I wouldn't have started suffering from the excruciating backaches and burning pain that has plagued me every single day since I was 19 years old.
Do you have any idea what it has been like to be in pain every single day for 20 years?
There has not been a single day since I was 19, that I've not had pain.
I honestly don't know what it feels like to not have pain, I can't remember what no pain feels like.
Maybe if those damn doctors had done their job and fixed me when I was younger, when I was a teenager, fixed me like another girl in my high school class was, that I wouldn't have become disabled at the age of 31.
At age 31, I was told by 3 orthopedic surgeons and 2 neurosurgeons, that my body couldn't handle the stress anymore, that if I continued to work, continued to put any kind of physical stress on my body any harder than walking at a slow pace, that I would be in a wheelchair within 5 years, and instead of doing spine fusion surgery, they would have been amputating my left leg at the pelvis due to the extensive and non-repairable nerve and blood vessel damage that was running from my lower back all of the way down into my left leg and all of the way to my toes.
All 5 of those surgeons wrote letters to SSDI and told them that I could never work again, and I made and kept copies of all of the letters that every single one of the 21 surgeons and specialists that I saw beginning in July 1998, all the way up until I met my surgeon in November 2005.
I have all of my own medical records, I had to pay to get copies of some of them, but after going from surgeon to surgeon so many times, I just started making my own medical records to bring with me to meet the new surgeons so that time wouldn't be wasted waiting for my records to be sent over to another new surgeon time after time.
It took from April 2001 to December 2005, to get approved for SSDI.
They denied me twice even with an attorney, and that's when I asked each of the 21 surgeons who treated me to write a letter to SSDI explaining how bad my condition was, and they all agreed to do it, they all wrote letters and sent them to my attorney, and almost all of them included their original notes from during the time they treated me and then had to send me to another doctor who "might" have been able to help me.
I really think it was those letters that finally got me approved.
I went off there eh?
Sorry, didn't mean to, it's just that period of time in my life was not only physically challenging, but emotionally challenging.
I wanted to give up fighting every single day, but then I'd look at my boys, and just keep on fighting.
Mark is a fighter, he will fight to get whatever needs to be done, done, but done his way, when he says so, not when a doctor says so.
He does not want to be middle-aged and fighting a battle everyday to just walk from the bed to the couch.
He doesn't want to put his kids through this either.
I asked him if he was really planning on having kids and he said that he was, at least 2 he said.
Then he told me that I need to make my body as strong as I can because the "Gram" is always the kids favorite babysitter.
Ha ha
I said I would do my best, but for now, let's just get through doc appointments and hurricane season, we can talk about me being a grandmother later.
Muuuucch later.
