#097. Thank 3 people who have bettered my life (1 of 3)
Sunday, January 9, 2011
Thank you #1 was given to my urogynocologist on July 15, 2010. He is the one who helped me find the right combo of oral meds as well as a cocktail of meds delivered directly via catheter to my ever-problematic and painful bladder. I also gave him a stuffed bladder (from Iheartguts) just to lighten the mood. I have the same stuffed bladder sent from Me hanging in my work office.
Dr. Tarnay,
I'm not quite sure how to even go about thanking you for all you have done so I will start with giving a view as to how you helped change my life.
Before meeting you I had been battling near constant pain for around 3 years. I was frustrated with the unpredictability of my bladder flares, exhausted from the multiple day and night trips to the bathroom, and trying to figure out how to come to terms with continuing to live (and I use that term loosely) this way . I had rearranged and re-engineered how I lived my life by placing a bunch of band-aid work arounds all over my symptoms in hope for a moment of relief.
I was failing.
It's hard for someone to understand how horrible you feel when you appear to look and act fairly normal. It's even harder for someone to believe that you are in serious pain when you are able to manage holding down a full-time job and perform day to day tasks. What they miss are the adjustments that were made for me to come across this way or how they evolved over the years. The best description I can come up with for others to get what living with the pain was like is to explain that instead of being able to yank your hand away when you touch a flame, imagine you are stuck holding your hand just slightly above that flame, but never moving it away. The flame might burn hotter or closer at times, but you will never know when. There is no real relief or break or a way to escape it. It became my new "normal". Over time I learned to just live with it and adjust my life accordingly the best that I could. My "world" became smaller, my smile less available, and my quest to always have bathroom access to ward off that pain took precedence over anything else.
I was miserable, but there was nothing I could do.
By the time I consulted with you I was rarely wearing jeans as they were too constrictive and I drove with only one hand as the other was used to keep the seat belt away from my abdomen. Riding in the car was often uncomfortable from the bumpiness and I lived in constant fear of being stuck in traffic with no bathroom access. I missed many work days and between the frustration and pain spent many others at my desk in tears. I felt embarrassed as I was always excusing myself or making excuses to use the restroom. I never knew day to day how I would feel and rarely made plans to avoid canceling last minute. I stayed away from activities where bathroom access was limited or those that "might" cause a flare. Intimacy was complicated and painful and generally avoided. I never felt rested as I was up so many times during the night.
I was a slave to my bladder.
At my first appointment you told me that you would find a way to help me feel better. I wanted to trust you, but had been down that road already. Many others wanted me to believe it was all in my head or not as bad as it seemed, but you took my pain at face value and vowed to fix it. Getting to today was not all smooth sailing, but you didn't give up and for that I am appreciative beyond words.
In the past few months I have been hiking all over Yosemite and Death Valley - all day kinds of hikes. I have been kayaking down the Colorado River. I have been caving and biking and running and snow shoeing and camping and...and...and. I have plans for a backpacking trip, canyoneering, a trapeze class, rock climbing, and beyond. I have a goal to run my first half marathon next year and will be able to honor my dad on the 11-year anniversary of his death later this year with a 100-mile bike ride* to raise money for MS (the disease that afflicted him). I haven't needed to get up at night for a few months now and am even able to sleep a little later than I have in years. Oh, and I can now wear both jeans and a seat belt.
I am back to LIVING.
Thank you for believing me and sticking with me and helping me. Thank you for not just allowing me to listen to my body, but for using the information to the best of your abilities to find a workable solution. Thank you for encouraging my crazy, overly-detailed pain graphs and for even consulting other specialists with them to make sure you weren't missing anything. Thank you for being open to trying unconventional methods and for not giving up when the first attempts only produced lukewarm results. Thank you for being there to tag up after every in-office treatment and for finding a long term solution for at home care.
You have changed my life in ways I can't describe and for that "Thank you" hardly seems like enough.
Forever Grateful,
Brenda
p.s. Please feel free to share this with any of the wonderful residents I met while under your care or any in the future... or really anyone you feel could benefit from it.
* (not part of the letter): Unfortunately, the bike ride didn't happen as it occurred the weekend before we climbed Mt. Whitney. Mt. Whitney is via permit and we didn't get to pick the date. I had to be realistic and pick one or the other... Hopefully the bike ride will happen this year (2011).
Dr. Tarnay,
I'm not quite sure how to even go about thanking you for all you have done so I will start with giving a view as to how you helped change my life.
Before meeting you I had been battling near constant pain for around 3 years. I was frustrated with the unpredictability of my bladder flares, exhausted from the multiple day and night trips to the bathroom, and trying to figure out how to come to terms with continuing to live (and I use that term loosely) this way . I had rearranged and re-engineered how I lived my life by placing a bunch of band-aid work arounds all over my symptoms in hope for a moment of relief.
I was failing.
It's hard for someone to understand how horrible you feel when you appear to look and act fairly normal. It's even harder for someone to believe that you are in serious pain when you are able to manage holding down a full-time job and perform day to day tasks. What they miss are the adjustments that were made for me to come across this way or how they evolved over the years. The best description I can come up with for others to get what living with the pain was like is to explain that instead of being able to yank your hand away when you touch a flame, imagine you are stuck holding your hand just slightly above that flame, but never moving it away. The flame might burn hotter or closer at times, but you will never know when. There is no real relief or break or a way to escape it. It became my new "normal". Over time I learned to just live with it and adjust my life accordingly the best that I could. My "world" became smaller, my smile less available, and my quest to always have bathroom access to ward off that pain took precedence over anything else.
I was miserable, but there was nothing I could do.
By the time I consulted with you I was rarely wearing jeans as they were too constrictive and I drove with only one hand as the other was used to keep the seat belt away from my abdomen. Riding in the car was often uncomfortable from the bumpiness and I lived in constant fear of being stuck in traffic with no bathroom access. I missed many work days and between the frustration and pain spent many others at my desk in tears. I felt embarrassed as I was always excusing myself or making excuses to use the restroom. I never knew day to day how I would feel and rarely made plans to avoid canceling last minute. I stayed away from activities where bathroom access was limited or those that "might" cause a flare. Intimacy was complicated and painful and generally avoided. I never felt rested as I was up so many times during the night.
I was a slave to my bladder.
At my first appointment you told me that you would find a way to help me feel better. I wanted to trust you, but had been down that road already. Many others wanted me to believe it was all in my head or not as bad as it seemed, but you took my pain at face value and vowed to fix it. Getting to today was not all smooth sailing, but you didn't give up and for that I am appreciative beyond words.
In the past few months I have been hiking all over Yosemite and Death Valley - all day kinds of hikes. I have been kayaking down the Colorado River. I have been caving and biking and running and snow shoeing and camping and...and...and. I have plans for a backpacking trip, canyoneering, a trapeze class, rock climbing, and beyond. I have a goal to run my first half marathon next year and will be able to honor my dad on the 11-year anniversary of his death later this year with a 100-mile bike ride* to raise money for MS (the disease that afflicted him). I haven't needed to get up at night for a few months now and am even able to sleep a little later than I have in years. Oh, and I can now wear both jeans and a seat belt.
I am back to LIVING.
Thank you for believing me and sticking with me and helping me. Thank you for not just allowing me to listen to my body, but for using the information to the best of your abilities to find a workable solution. Thank you for encouraging my crazy, overly-detailed pain graphs and for even consulting other specialists with them to make sure you weren't missing anything. Thank you for being open to trying unconventional methods and for not giving up when the first attempts only produced lukewarm results. Thank you for being there to tag up after every in-office treatment and for finding a long term solution for at home care.
You have changed my life in ways I can't describe and for that "Thank you" hardly seems like enough.
Forever Grateful,
Brenda
p.s. Please feel free to share this with any of the wonderful residents I met while under your care or any in the future... or really anyone you feel could benefit from it.
* (not part of the letter): Unfortunately, the bike ride didn't happen as it occurred the weekend before we climbed Mt. Whitney. Mt. Whitney is via permit and we didn't get to pick the date. I had to be realistic and pick one or the other... Hopefully the bike ride will happen this year (2011).
That's an amazing story. I know too often in the health care field, once people are "fixed" they're off and running (as they should be!) but it leaves everyone wondering "what ever happened to .."
I bet he cherishes this letter more than you'd ever know!
Isn't it nice when you actually find a doctor who can help you? I admire that you did not give up. I can only imagine the hell you went through. So glad you are back to enjoying life.
What a great letter! I'm sure he will appreciate it. : )
You've been doing some really kick ass stuff, so I'm grateful you found him too. I'd miss hearing about it otherwise.
I'll ride in your bike race, I know you will!
(WTF is up with 1/2 marathons these days, people are crazy!)
SH, they will never be left wondering what happened to me. LOL. I was that pain in the ass patient for way too long. I have annual appointments now for my bladder med refills and he is the angel who does my annual well woman exam so I don't have to go to the OB/Gyn floor. Just one more reason to love this guy!
It's weird, Phoebe, that sometimes I feel so good that I can almost convince myself that it must have been in my head or wasn't that bad and then I have another flare and know that it really was so ugly.
Oh yeah, FM, bring on the bike race! Yeah, you crazy runner types and your half marathons. Damn, I need to get to training!