Introducing My Two Leading Ladies
So before I get too far into this whole “blogging” thing, I figured it would probably be appropriate to do a little background. I’ve blogged before, but not extensively. Primarily, I’ve used blogs as a non-confrontational way to explore spirituality and my thoughts/musings on religion with friends and family. While I think there may be something inherently narcissistic about personal blogging, in recent months I’ve come to realize that my close friends and family really do want to hear about how things are going, and a blog seems to be a sensible place to house those thoughts. I’ve also heard incredible stories of people going through their own medical mysteries, so perhaps my story can help.
I’ve decided to call this blog the Amazing Adventures of Thelma & Louise because it will probably focus around the experiences I share with my two leading ladies of the moment, my left (Thelma) and right (Louise) kidneys. I do realize that it probably sounds a bit “off” to not only name my kidneys, but I’ve also devised somewhat elaborate personalitites for them each. Keep in mind, though, that I name many things. From Fred the Ford to Bella the Acura, personally naming inanimate objects has become a bit of a habit for me. It only makes sense to me to name the two parts of my body that are being the most tenaciously difficult and vocal.
First there’s Thelma. She’s a relatively quiet one, hanging out on the left and trying to be the peace-keeper. She’s into mediation and yoga, and she rarely, if ever makes any noise. She’s damaged, but she’s not a whiner. Thelma believes in following the rules, obeying orders, and keeping calm.
Then there’s Louise. She seems innocent enough, but she’s a fiesty one. Over on the right, she’s usually sticking out an elbow and making her presence known. If I’ve ingested something she finds offensive, she’ll be letting me know, sending dull pains up my back and across my ribs. This is one high-maintenance chick. Most days, she just says a kind hello, but there are times when she screams for my attention.
Now the reason that these two organs have become such a strong presence in my awareness is because I was recently diagnosed with Wegener’s granulomatosis. This disease is technically classified as vasculitis, which is an inflammatory disease that affects the small to medium blood vessels. It’s typically classified as auto-immune, meaning that my body is attacking itself. Essentially, what happens is that my blood vessels become inflamed, causing blood flow to slow down or stop. Well, what happens to tissue that doesn’t have blood flow? It dies…. so there you go. Little Miss Thelma and Louise have been thirsty for a while, and so the loss of blood flow has caused considerable permanent damage. As of my last blood work, I’m in low/mid stage 4 kidney failure. Just for reference, stage 5 is dialysis and possible transplantation. What’s interesting in my case is that I haven’t had too much involvement in other areas, so my case is considered “renal limited”. I do have other symptoms, including nasal congestion, hoarse voice, and granulomas in my nose. Mmm… yummy.
My doctors have been fabulous, and I’ve worked with several people to build a team of devoted individuals that are really working to get me in remission. The “gold standard” of care for Wegener’s is oral chemotherapy (cytoxan) and steroids (prednisone). So, after getting several 2nd opinions, that’s my cocktail of choice. So far, the meds haven’t been that bad. The cost of the actual power house meds isn’t bad, but there are some other meds that I have to take to keep myself protected. As a teacher on high doses of immuno-suppressive medications, the primary concern for me is infection. I have to be really careful with whom I’m around and how sanitary I can keep my surroundings. If you’ve ever been in a room with 35 kids, then you know that can be a challenge in education. So my doctor has me on an awful liquid suspension medication, like cough syrup, only flourescent yellow and staining. It makes my tongue number and coats my teeth and lips in a lovely jaundicey yellow tint. Delightful! That particular medication costs about $2400 a month, and my share is $293 after insurance. Of course, what can you do? This medication is to prevent me from getting pneumonia, which would mean hospitalization with my immune system. So every month, we hand our kind pharmacist our Visa card and hope for the best.
The last few months have taught me a great deal, though. While it’s scary to be sitting across from a doctor - at the tender age of 32 - being told that I would be dead in 3 months if I don’t treat this illness, it has also slapped some sense into me. For the first time in years, I’m taking care of myself. I’m finally putting myself first, allowing myself to rest, saying “no” to extra tasks and committments, and taking time to savor the sweet moments. I still have a lot to learn, for sure, but I know I’m up to it. I have more faith in my inner strength now than ever before, and even though Thelma and Louise are hurting, I know that they’re behind me. We’re working together. I’m taking care of them (and all of their other organ buddies), and they have my back too. And maybe along the way, we can have some fun too!
I’ve decided to call this blog the Amazing Adventures of Thelma & Louise because it will probably focus around the experiences I share with my two leading ladies of the moment, my left (Thelma) and right (Louise) kidneys. I do realize that it probably sounds a bit “off” to not only name my kidneys, but I’ve also devised somewhat elaborate personalitites for them each. Keep in mind, though, that I name many things. From Fred the Ford to Bella the Acura, personally naming inanimate objects has become a bit of a habit for me. It only makes sense to me to name the two parts of my body that are being the most tenaciously difficult and vocal.
First there’s Thelma. She’s a relatively quiet one, hanging out on the left and trying to be the peace-keeper. She’s into mediation and yoga, and she rarely, if ever makes any noise. She’s damaged, but she’s not a whiner. Thelma believes in following the rules, obeying orders, and keeping calm.
Then there’s Louise. She seems innocent enough, but she’s a fiesty one. Over on the right, she’s usually sticking out an elbow and making her presence known. If I’ve ingested something she finds offensive, she’ll be letting me know, sending dull pains up my back and across my ribs. This is one high-maintenance chick. Most days, she just says a kind hello, but there are times when she screams for my attention.
Now the reason that these two organs have become such a strong presence in my awareness is because I was recently diagnosed with Wegener’s granulomatosis. This disease is technically classified as vasculitis, which is an inflammatory disease that affects the small to medium blood vessels. It’s typically classified as auto-immune, meaning that my body is attacking itself. Essentially, what happens is that my blood vessels become inflamed, causing blood flow to slow down or stop. Well, what happens to tissue that doesn’t have blood flow? It dies…. so there you go. Little Miss Thelma and Louise have been thirsty for a while, and so the loss of blood flow has caused considerable permanent damage. As of my last blood work, I’m in low/mid stage 4 kidney failure. Just for reference, stage 5 is dialysis and possible transplantation. What’s interesting in my case is that I haven’t had too much involvement in other areas, so my case is considered “renal limited”. I do have other symptoms, including nasal congestion, hoarse voice, and granulomas in my nose. Mmm… yummy.
My doctors have been fabulous, and I’ve worked with several people to build a team of devoted individuals that are really working to get me in remission. The “gold standard” of care for Wegener’s is oral chemotherapy (cytoxan) and steroids (prednisone). So, after getting several 2nd opinions, that’s my cocktail of choice. So far, the meds haven’t been that bad. The cost of the actual power house meds isn’t bad, but there are some other meds that I have to take to keep myself protected. As a teacher on high doses of immuno-suppressive medications, the primary concern for me is infection. I have to be really careful with whom I’m around and how sanitary I can keep my surroundings. If you’ve ever been in a room with 35 kids, then you know that can be a challenge in education. So my doctor has me on an awful liquid suspension medication, like cough syrup, only flourescent yellow and staining. It makes my tongue number and coats my teeth and lips in a lovely jaundicey yellow tint. Delightful! That particular medication costs about $2400 a month, and my share is $293 after insurance. Of course, what can you do? This medication is to prevent me from getting pneumonia, which would mean hospitalization with my immune system. So every month, we hand our kind pharmacist our Visa card and hope for the best.
The last few months have taught me a great deal, though. While it’s scary to be sitting across from a doctor - at the tender age of 32 - being told that I would be dead in 3 months if I don’t treat this illness, it has also slapped some sense into me. For the first time in years, I’m taking care of myself. I’m finally putting myself first, allowing myself to rest, saying “no” to extra tasks and committments, and taking time to savor the sweet moments. I still have a lot to learn, for sure, but I know I’m up to it. I have more faith in my inner strength now than ever before, and even though Thelma and Louise are hurting, I know that they’re behind me. We’re working together. I’m taking care of them (and all of their other organ buddies), and they have my back too. And maybe along the way, we can have some fun too!
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