This time last year I was wondering about my future. I started having some back pain in late October, then came down with a really bad cold in early November that resulted in some intense coughing. That made the back pain worse. I eventually got over the cold, but not the back pain.
After an MRI and several x-rays, as well as visits to primary care and back/hip doctors, I was told there wasn't much that could be done. My medicine that I have to take to keep my transplanted heart was causing some severe reduction in bone mass, and my spine seemed to be its main target.
I had been walking with a cane since early November, but the pain was just getting worse and worse. In January, I finally got connected with a pain specialist and went in for an injection in my back. Now, I have a high tolerance for pain - which has been confirmed by the pain specialist. But the simple act of just getting in and out of bed would cause me to scream aloud, and I had to have the cane available to be able to do it.
I was also have to do some thinking about whether I could work or not. The typical life expectancy of a transplant patient is 7-10 years...I will be at 12 this February. After 10 years, your percentages start going down pretty fast. Did I want to try to continue to work, in pain, for my remaining years? I started looking into retirement but since I do not have enough years in, my income would only cover my insurance and my pharmacy bill....nothing to live on. I checked out disability but I had to stop working first before anyone would even talk to me about it. And even if I did get it, chances are it still wouldn't be enough to live off of.
The pain doc suggested trying a procedure that would put basically a liquid cement in the worse back fracture (I have 3) and see if it would shore it up and help with the pain. To do so meant that would "jackhammer" into the good part of the vertebrae, get to the fracture area and fill it, then fill in where they had to "jackhammer" in. However, lifting (which I couldn't do anyway) anything was going to become an issue from this point on.
Fortunately, the procedure worked well enough to ease the pain to a manageable level. Surprisingly, up to this date, I haven't had to have it done again although it is typical for it to have to be done more than once. Recently, I went back to the pain specialist and will probably have another MRI ran to see if one of the other 2 fractures is developing a similar problem. If this has to be done, hopefully it can before the end of the year as this is an expensive procedure and my insurance deductible is paid! This year, it has started to affect my ankles. I've been hobbling around for about 6 weeks now and despite x-rays and a possible MRI, nothing can really be fixed.
Gratefully, my parents have been here to help. I can't lift my mattress to change sheets, so they come over and help with that. I can't push a vacuum, so they help with that. For a while, emptying the dishwasher or carrying laundry to the washer was an issue, but that has gotten better. Now they are beginning to have pain and aches of their own. Robert and Susan have moved to Arkansas and aren't as close by to help although I know they would help in any way they could, if needed. My cardio doc was surprised when he saw me in August that we weren't facing cardio failure as he had a feeling that due to the pain and some other indicators that we'd be looking at that as well. So far, we're not facing that yet.
And as far as working, there are a couple of factors there. Oklahoma doesn't support education very well at all, and promises continue to fall through. States nearby are paying 10K to 20K more to teachers, and people are leaving in droves and will continue to do so. I'm 5 years away from retiring here, but I don't know if I can hold out physically or afford to stay. Yet, my parents and my doctors are here and I'd like to keep them both around for a while. So, some decisions are going to have to be made along those lines soon. Do I want to continue to work, and if so, do I want to do it in Oklahoma? Is it worth making a change to another state? There are some ideals with my current district that I don't totally agree with, so do I stay in Oklahoma and look for another position - because let's face it, there are going to be openings due to teachers moving to greener pastures.
So, you are probably wondering why the title of this blog was "Giving Thanks" at this point. Well, I'm giving thanks because I'm still on this earth. I'm giving thanks because while I don't always feel great I'm still able to get up and around...I often see people who can't. I'm giving thanks because my parents are willing to help out as much as they can when they are able, and that I still have them with me. I'm giving thanks because I have a brother and sister-in-law who do all they can when they can. I'm giving thanks because almost 12 years ago I wasn't sure I'd see another Thanksgiving or Christmas ever again.
With all the craziness in this world right now, with all the challenges of the past 12 months, it just felt like the right time to stop and give thanks. I hope you'll take a moment to do so as well.
Saturday, November 19, 2016
Saturday, February 20, 2016
11 Years - The Times They Are A Changin'
Eleven years ago on the 23rd I was given a second chance at life by the family of Tiffany Fleethart Mashore, who had made the courageous decision to be an organ donor. I've always said these are "bonus years" for me. I've seen my parents celebrate their 50th Wedding Anniversary and will soon see my father celebrate his 80th birthday. I've seen children of friends and family graduate from high school and college and start their own lives. I've seen students that I've had in the past become teachers themselves.
But this past year has been a difficult one. My 60 pills a day are catching up with me. The prednisone that I have to take to keep from going into rejection (had a serious issue about 4 years ago) has its own side effects, one of which is the thinning of your bones. This summer, I had a bone density test and was told there was significant reduction from the last one about 4 years ago. Then in October, I began to develop some back issues that have turned out to be pretty significant. My lumbar vertebra, which should be straight across the top, look like your molars. These "dips" cause my disc's the slip which causes some pain. In addition, I have spinal fractures which are causing the majority of my pain.
There have been times where I haven't been able to work, and I hate leaving my fellow counselors short handed. I feel that I have a pretty good pain tolerance but when it takes 20 minutes to put on your socks and you scream when you try to get out of bed, somethings not right. I've had an MRI and saw both a hip and back specialist who say there is no surgery that will help. I've gotten a pain doctor who gave me a lumbar ejection which did give some relief, but I still am in pain at a level of 4-6 nearly everyday.
In addition, my cardiologist said my heart was in good shape but that my chances of surviving to year 20 drop from the 50% range I am in now to 25%, and the following 5 years after that to about 10%. So, while the heart is doing well, all the drugs that keep me alive have significant impact on my future.
So, the question becomes, what to do? While I'm not retirement age or eligible yet, do I go ahead and retire and try to get disability? There is no way I can live on retirement itself....it barely pays for my insurance and pharmacy bill, let alone rent, food, and bills. I'm not sure that even with disability, that is going to be possible.
I've got one last shot for pain relief coming up on the 29th....the pain doc is going to try to insert some "liquid cement" in these fractures to see if we can stabilize them enough to give me some relief. The aqua therapy that I've done for the month has helped with balance and some strength, but that has been about it.
I'm somewhat discouraged, in pain, depending on my family to help with basic things like house cleaning and grocery shopping, and feeling guilty that I'm not able to help my parents as I should...rather at their age they are having to continue to help me. I've got some major life decisions to make soon, and I'd appreciate your prayers as I go through the process. I'm really hoping this procedure will be successful so that I can delay some of this for a couple of years, but I know it is coming.
As I said in the beginning of this post, I'm grateful for the extra time I've had, and I hope I've done something with it to make a difference. I would just like to have a little bit more time, if possible...and preferably pain free.
But this past year has been a difficult one. My 60 pills a day are catching up with me. The prednisone that I have to take to keep from going into rejection (had a serious issue about 4 years ago) has its own side effects, one of which is the thinning of your bones. This summer, I had a bone density test and was told there was significant reduction from the last one about 4 years ago. Then in October, I began to develop some back issues that have turned out to be pretty significant. My lumbar vertebra, which should be straight across the top, look like your molars. These "dips" cause my disc's the slip which causes some pain. In addition, I have spinal fractures which are causing the majority of my pain.
There have been times where I haven't been able to work, and I hate leaving my fellow counselors short handed. I feel that I have a pretty good pain tolerance but when it takes 20 minutes to put on your socks and you scream when you try to get out of bed, somethings not right. I've had an MRI and saw both a hip and back specialist who say there is no surgery that will help. I've gotten a pain doctor who gave me a lumbar ejection which did give some relief, but I still am in pain at a level of 4-6 nearly everyday.
In addition, my cardiologist said my heart was in good shape but that my chances of surviving to year 20 drop from the 50% range I am in now to 25%, and the following 5 years after that to about 10%. So, while the heart is doing well, all the drugs that keep me alive have significant impact on my future.
So, the question becomes, what to do? While I'm not retirement age or eligible yet, do I go ahead and retire and try to get disability? There is no way I can live on retirement itself....it barely pays for my insurance and pharmacy bill, let alone rent, food, and bills. I'm not sure that even with disability, that is going to be possible.
I've got one last shot for pain relief coming up on the 29th....the pain doc is going to try to insert some "liquid cement" in these fractures to see if we can stabilize them enough to give me some relief. The aqua therapy that I've done for the month has helped with balance and some strength, but that has been about it.
I'm somewhat discouraged, in pain, depending on my family to help with basic things like house cleaning and grocery shopping, and feeling guilty that I'm not able to help my parents as I should...rather at their age they are having to continue to help me. I've got some major life decisions to make soon, and I'd appreciate your prayers as I go through the process. I'm really hoping this procedure will be successful so that I can delay some of this for a couple of years, but I know it is coming.
As I said in the beginning of this post, I'm grateful for the extra time I've had, and I hope I've done something with it to make a difference. I would just like to have a little bit more time, if possible...and preferably pain free.
Wednesday, November 25, 2015
Giving Thanks
As the holiday season approaches, and the start of my school year has been busy and challenging, I'm taking stock of all I should be thankful for. My earliest memories of Thanksgiving always involved family, so that is the first thing I'm thankful for.
My parents have, and continue, to provide for my every need. From my earliest memories of walking hand in hand with my father, to recently being in the kitchen learning my mother's "tricks" for her dressing and pumpkin pies, I've grown to cherish every minute with them. There was a time when we weren't sure we'd get to have our cherished holidays together anymore, but God had different plans. Now, we value every call, every meal, and every conversation we have been granted. My brother and I have been given a great gift in our parents and I hope they know how much we love them.
My parents have, and continue, to provide for my every need. From my earliest memories of walking hand in hand with my father, to recently being in the kitchen learning my mother's "tricks" for her dressing and pumpkin pies, I've grown to cherish every minute with them. There was a time when we weren't sure we'd get to have our cherished holidays together anymore, but God had different plans. Now, we value every call, every meal, and every conversation we have been granted. My brother and I have been given a great gift in our parents and I hope they know how much we love them.
Thanksgiving memories always include thinking of my grandparents, Lawrence and Goldie Gore. I was always close to them, namely because I was the only grandchild for 7 years (yes, I was spoiled by that side of the family...I'll gladly admit it) and the apple of their eyes. My grandmother would have a new dress made for me and my grandfather gave me my love of music and the outdoors. When we moved back to Oklahoma in 1972, I would spend weekends at their house. My grandmother taught me how to cook and can food, and my grandfather taught me how to fish. I was really good at catching "wood bass" which was his term for the tree branches the lures often found their way to. We always spent Thanksgiving at their house, with 1978 being the last time. My grandfather went to his Heavenly home the Monday after Thanksgiving in 1978. After that, we had our gatherings at our house. The holidays were a little less bright after that. But now they are spent remembering those no longer with us and missing aunts/uncles/cousins who now have families of their own to make their own memories with.
Ray and Avis Bendure had over 30 grandchildren to spread their love among. Most of my younger years were spent with them in the summer as we pipe lined, but we would spend Christmas Eve with the entire family after hastily making fast trips from Illinois to arrive on time. My grandfather had a nickname for me, JJ, and we still put up the small Christmas ornament he bought me nearly 50 years ago...which has miraculously made it through many moves. My grandmother loved to get me into a "debate" (really, she just loved to get me riled up and argue with her) until my parents had to tell her to stop. Between Grandpa Gore and Grandma Avis, I inherited their bright blue eyes. My grandfather had less than an 8th grade education and my grandmother had a less than ideal childhood, but they found their way to each other and created a large family who have gone on to do successful things.
Last but not least, I have been granted a fantastic brother and sister-in-law. There are 7 years difference between Robert and I, and that was a lot of fun during my teenage years, but we both know that if we need something all we have to do is call the other. In fact, we often have the ability to just know when we need to speak to each other. Robert supported me during the transplant and offered to stand by my decision whichever way it went. He comes when I need something that I just can't do. He's helped me fulfill some of my dreams by taking me to concerts and shows that I wouldn't be able to attend otherwise. Susan, has the same feelings toward family as we do. The care she showed for her father while he was ill and now as she checks on her mother and helps her brother with his school proves that Robert made the perfect mate choice.
Here's hoping that all of my friends and family take a moment to discover what they are thankful for during this weekend. It is so easy to get wrapped up in the busyness of the holiday rather than to slow down and just say thanks. It is good to stop the madness of Black Friday and jumping to the next holiday and take stock of what we should be grateful for....family, friends, a wonderful country, the men and women who constantly defend it, and everything that we have. As the song says, "give thanks with a grateful heart".
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