I guess if I'm gonna be honest, a lot about what I'm going through (& what I've been going through) can be considered tough. Somehow though, I can convince myself to handle a lot. I can usually put things into perspective and remember that this is life ~ my life. The thing that really weighs on me, really gets to me though, is failure. The worst part is that in my head I know that I have no control over these things. I know that it's not my fault per se that I continue to get bad test results. But it's still a VERY tough mental game. It's hard to stop myself from feeling like a failure each time the results are shared with me. My body has become my worst enemy. I'm constantly fighting against myself and rarely winning.
I've started pulmonary rehab again, but it is completely different than the program that Dr. Thompson's office provided. The program here at National Jewish is much more intense and finely tuned to my specific needs. Each session is only thirty minutes ~ thirty killer minutes. It's thirty minutes that highlight all the things I can't do anymore. I am constantly reminding myself that I've been through a lot & my body is fighting against me. Emily is the most amazing physical therapist and she is supportive and constantly encouraging. She refuses to let me forget I am getting stronger. I know that I can beat this too. It's just another obstacle I've had to acknowledge.
Wednesday, March 21, 2012
Tuesday, March 20, 2012
Smiles for Progress
Dr. Olson.
Dr. Amy Olson.
That name stands alone as a powerful force. She's comforting, thorough, brilliant, and compassionate. I am here because I want to be well and feel good more than anything I can imagine. As if that isn't motivation enough, I find myself working even harder toward challenging goals and pushing through tough tests because I don't want to disappoint her.
Today she was disappointed because I've lost several pounds in the past week. I feel like I eat all the time. I don't understand my body. She's pretty serious about this though. Apparently if my BMI drops too low it can cause more problems than I'm already dealing with. Neither of us want that! Luckily, that conversation was followed by better news. My ENO is down to 55! Oh yes! That's right! I did say fifty-five! No kidding! She was even smiling about my spirometry! There was less truncation in the loops and my lung function was much better. I still haven't achieved the 6 second mark on the expiratory loop. Today I was less than three seconds. Honestly, I don't know how people breathe out for that long. I'm working on it though, and as she said "let's just smile for progress!" I know that one day very soon I'll be writing about surpassing this goal too!
Because my lung function is stable, she felt comfortable increasing my treatment dosage. She and the other doctors have consulted and feel they need to push the limits while they're monitoring me so closely to see if it will work for me at all. She said the negative side effects will probably worsen, but if the tests continue to show nothing positive we'll stop and try something else. Once again, I just have to keep reminding myself that this is why I'm here and I knew it wouldn't be easy. I can handle this because better times are coming.
Dr. Amy Olson.
That name stands alone as a powerful force. She's comforting, thorough, brilliant, and compassionate. I am here because I want to be well and feel good more than anything I can imagine. As if that isn't motivation enough, I find myself working even harder toward challenging goals and pushing through tough tests because I don't want to disappoint her.
Today she was disappointed because I've lost several pounds in the past week. I feel like I eat all the time. I don't understand my body. She's pretty serious about this though. Apparently if my BMI drops too low it can cause more problems than I'm already dealing with. Neither of us want that! Luckily, that conversation was followed by better news. My ENO is down to 55! Oh yes! That's right! I did say fifty-five! No kidding! She was even smiling about my spirometry! There was less truncation in the loops and my lung function was much better. I still haven't achieved the 6 second mark on the expiratory loop. Today I was less than three seconds. Honestly, I don't know how people breathe out for that long. I'm working on it though, and as she said "let's just smile for progress!" I know that one day very soon I'll be writing about surpassing this goal too!
Because my lung function is stable, she felt comfortable increasing my treatment dosage. She and the other doctors have consulted and feel they need to push the limits while they're monitoring me so closely to see if it will work for me at all. She said the negative side effects will probably worsen, but if the tests continue to show nothing positive we'll stop and try something else. Once again, I just have to keep reminding myself that this is why I'm here and I knew it wouldn't be easy. I can handle this because better times are coming.
VCD Irritant Challenge
I felt like there was a lot on the line with this appointment. I was pretty nervous as I headed over to the rehab floor. This was my first session with Carly where we were really going to push my body to some limits and work on beating my respiratory system's hypersensitivity to irritants. What a goal!
Today, she set up the challenge using strong perfume. I had to enter and exit the room over and over increasing my exposure time with each session. It sounds so simple now that I'm writing about it, but it was a true challenge. The first time we entered the room my body reacted instantly. I've been living with this for so long that it doesn't scare me, but it frustrates me endlessly. I've been breathing better for the past week than I have in months, maybe even more than a year. Things are on the right track for once. It's so disheartening to know that exposure to an irritant can have so much control over my body. With that in mind, that's another reason I love this place, and I know this is where I'm supposed to be. No one else in my medical history has even tried to help the whole me in so many ways. I am so thankful to be here where they have the resources to help me in all these creative ways. It's going to take many more of these challenges to desensitize my respiratory system and keep it from shutting down, but that's what I'm here for & they're in it with me. :)
I walked away realizing that the road ahead of me is still quite long, but I'm walking it with amazing people!
Today, she set up the challenge using strong perfume. I had to enter and exit the room over and over increasing my exposure time with each session. It sounds so simple now that I'm writing about it, but it was a true challenge. The first time we entered the room my body reacted instantly. I've been living with this for so long that it doesn't scare me, but it frustrates me endlessly. I've been breathing better for the past week than I have in months, maybe even more than a year. Things are on the right track for once. It's so disheartening to know that exposure to an irritant can have so much control over my body. With that in mind, that's another reason I love this place, and I know this is where I'm supposed to be. No one else in my medical history has even tried to help the whole me in so many ways. I am so thankful to be here where they have the resources to help me in all these creative ways. It's going to take many more of these challenges to desensitize my respiratory system and keep it from shutting down, but that's what I'm here for & they're in it with me. :)
I walked away realizing that the road ahead of me is still quite long, but I'm walking it with amazing people!
Wednesday, March 14, 2012
bad news is different here
It was yet another gorgeous, sunny Denver day and Jackson and I were out walking when the phone rang. It was Dr. Toribara's nurse from National Jewish. She wanted to let me know that some lab results were in that the doctors were concerned about. My hemoglobin level had dropped quite a bit and they needed to add some tests to my schedule. She wanted me to know that Dr. Toribara and Dr. Olson were working together to figure things out and I had nothing to worry about. I just needed to report to the lab before my appointments in the morning. She said he'd also be scheduling some procedures to investigate the bloodloss, but they would take care of the details.
This is just one, tiny example of how different bad news is here. Yeah, it does stink to hear that my hemoglobin has dropped again. It does stink to hear that I'm gonna need to be put under for some not so pleasant procedures when I'm out here alone. It's frustrating that my body continues to throw curveballs and react in bizarre ways. That is ALL SO MUCH EASIER to handle when it's followed by "don't worry, Toni, we're taking care of you and all the details" though. Wow! I'm convinced that part of the reason I'm improving is due to the fact that I'm not having to deal with mounds of stress related to my medical care. People are taking care of things for me. The rest of the medical world could truly learn a lot from this place.
This is just one, tiny example of how different bad news is here. Yeah, it does stink to hear that my hemoglobin has dropped again. It does stink to hear that I'm gonna need to be put under for some not so pleasant procedures when I'm out here alone. It's frustrating that my body continues to throw curveballs and react in bizarre ways. That is ALL SO MUCH EASIER to handle when it's followed by "don't worry, Toni, we're taking care of you and all the details" though. Wow! I'm convinced that part of the reason I'm improving is due to the fact that I'm not having to deal with mounds of stress related to my medical care. People are taking care of things for me. The rest of the medical world could truly learn a lot from this place.
Monday, March 12, 2012
A New Beginning...
Yep, today's the first day of my road to real hope for wellness. It's finally here and I'm all in with both feet (personal belongings & a loyal dog)! Let's do this!
I saw Lindsey and Stacey off from their hotel this morning. I'll admit to a tear or two as I drove away. I'm pretty sure now that this endeavor is gonna be a little tougher than I wanted it to be. So of course it was hard to send off the two people in the city who I can call friend. I know new friends will come with time, but time is always a hard thing to swallow.
My appointments for today were very "business" oriented. Even though I've been coming to NJ off and on for two years now, today was a lot like an initial visit. Dr. Olson wanted baselines so we could set goals and clearly measure progress while I'm here. The best part, and probably most needed part of my day happened while I was in the exam room waiting for Dr. Olson. Dr. Maleki walked by and noticed me in the room. She stopped in her tracks, bounced in the room, and embraced me. She excitedly asked if I was back in Denver & all moved in. When I responded she was so excited! She told me she and Dr. Olson had been counting down the days until my return! They were so thrilled I'd agreed to come so they could finally~truly help me to get better! She bounced out as quickly as she had bounced in.
It took a moment for her words to sink in. "They've been counting the days to my return???" "They're excited that I'm here??" It was EXACTLY what I needed to hear. I had no doubt that God chose this path for me, but today I needed a little extra comfort. Those words strengthened me and gave me what I needed to push forward.
Dr. Olson met with me and reminded me even more why I am here in this place. She is a true champion. She shared her immediate plan, added things to my schedule, and explained her thoughts. I completed the rest of the tests and labs for the day and headed home to process it all.
This is a new beginning... and I can do what it takes to make it through...
I saw Lindsey and Stacey off from their hotel this morning. I'll admit to a tear or two as I drove away. I'm pretty sure now that this endeavor is gonna be a little tougher than I wanted it to be. So of course it was hard to send off the two people in the city who I can call friend. I know new friends will come with time, but time is always a hard thing to swallow.
My appointments for today were very "business" oriented. Even though I've been coming to NJ off and on for two years now, today was a lot like an initial visit. Dr. Olson wanted baselines so we could set goals and clearly measure progress while I'm here. The best part, and probably most needed part of my day happened while I was in the exam room waiting for Dr. Olson. Dr. Maleki walked by and noticed me in the room. She stopped in her tracks, bounced in the room, and embraced me. She excitedly asked if I was back in Denver & all moved in. When I responded she was so excited! She told me she and Dr. Olson had been counting down the days until my return! They were so thrilled I'd agreed to come so they could finally~truly help me to get better! She bounced out as quickly as she had bounced in.
It took a moment for her words to sink in. "They've been counting the days to my return???" "They're excited that I'm here??" It was EXACTLY what I needed to hear. I had no doubt that God chose this path for me, but today I needed a little extra comfort. Those words strengthened me and gave me what I needed to push forward.
Dr. Olson met with me and reminded me even more why I am here in this place. She is a true champion. She shared her immediate plan, added things to my schedule, and explained her thoughts. I completed the rest of the tests and labs for the day and headed home to process it all.
This is a new beginning... and I can do what it takes to make it through...
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