I figured I'd share my latest health strategy with the blog world. When it seems that no plan is permanent, perfectly effective, or enjoyable, you gotta go with something that you just plain enjoy and merge it in.
My new strategy is a health/life agenda. I always loved getting a new agenda/planner each year in school, and would start out with a goal of perfectly neat writing, using colour-coded pens, and seeing each page stacked with both school work (accomplishments once they had passed) and exciting social plans. Sort of like a record of how cool my life was. This of course never seemed to pan out. Life got in the way, as it always does and there would be empty pages followed by some doodles and scrawled lyrics (while bored in class usually) and scribbled out plans. Still, I never stopped loving starting anew the next year.
Last year I actually bought my first post-academic agenda from staples for fun. At that time I purely just wanted the enjoyment of it back, and was off and on with using it to its full potential. A few weeks ago I replaced it and started over, with a defined plan to write every solitary health/life record I felt important in each day. Its been going good for the couple of weeks I've had it. And, by good I mean both that I've been writing very close to every single day, and that it has made me remember to do all my CF stuff flawlessly on those days. I think it will prove a useful tool for clinic as well (I've mentioned this idea before to the docs but never brought the planner in) since sometimes when they ask how things have been, I can't fully recall. Its also a good way to be accountable to yourself with med-taking, exercise, food intake (ive been recording when i have smoothies), etc.
2 weeks from today I have what I consider to be a "big" clinic. It will be my first clinic at my regular hospital since June (I haven't been away from it this long in years), I will get the results of Mike's genetic testing for the CF gene (!!!), and will be addressing why I was not allowed to complete the transplant assessment. Until then, I am trying to lay low, and appreciate the stability my CF seems to grant me. I'm very grateful for that.
Tuesday, August 31, 2010
Saturday, August 14, 2010
Werewolf Syndrome
Some of the big cliches in life are things such as "this too shall pass", and "the only thing that is for certain in life is that it will change". Stuff like that. Phrases that bring both comfort and sadness. We are all united in these things.
I can't help but feel like CF magnifies this phenomenon for better and for worse. It jerks you around like a rickety roller coaster. One moment you feel great.. on top of the world. The next, on what feels like deaths door with no ambition to live life because every tightly-bound breath is just too damn hard. This isn't even the problem really. Its that its so unbelievably unpredictable. You don't know if you have hours, days or months before the next bad or good spell. I feel like a werewolf trying to cram human activities in before the next full moon.
I ran headfirst into a good spell after my disappointing visit to the transplant hospital. I'm not above considering that hearing I'm "too healthy x 2" for listing nested little confidence eggs in my brain and have led to this slight improvement on my energy and ability to do things. In fact, I think THAT coupled with seeing my 0.85 litre blow at that hospital was great for my ego, whether any of it was true or not. On top of this, I've been going through a little smoothie obsession/indulgence since I walked past the booster juice in the hospital cafeteria and regretted not stopping. Ive had a different smoothie with various herbal boosters (eg ginseng, echinacea) here at home every single day since. "Fruit improves ones energy level??? Now thats a shocker"--Mrs Heart of the Matta, BaSCN... the "N" stands for Nutrition
All I know, is I hope whatever combination of real/imaginary events led to how I am currently doing will have a cumulative effect on my health for the next CF clinic at my regular hospital so that I may have the energy to argue about the other jerking around I experienced over transplant assessment.
I can't help but feel like CF magnifies this phenomenon for better and for worse. It jerks you around like a rickety roller coaster. One moment you feel great.. on top of the world. The next, on what feels like deaths door with no ambition to live life because every tightly-bound breath is just too damn hard. This isn't even the problem really. Its that its so unbelievably unpredictable. You don't know if you have hours, days or months before the next bad or good spell. I feel like a werewolf trying to cram human activities in before the next full moon.
I ran headfirst into a good spell after my disappointing visit to the transplant hospital. I'm not above considering that hearing I'm "too healthy x 2" for listing nested little confidence eggs in my brain and have led to this slight improvement on my energy and ability to do things. In fact, I think THAT coupled with seeing my 0.85 litre blow at that hospital was great for my ego, whether any of it was true or not. On top of this, I've been going through a little smoothie obsession/indulgence since I walked past the booster juice in the hospital cafeteria and regretted not stopping. Ive had a different smoothie with various herbal boosters (eg ginseng, echinacea) here at home every single day since. "Fruit improves ones energy level??? Now thats a shocker"--Mrs Heart of the Matta, BaSCN... the "N" stands for Nutrition
All I know, is I hope whatever combination of real/imaginary events led to how I am currently doing will have a cumulative effect on my health for the next CF clinic at my regular hospital so that I may have the energy to argue about the other jerking around I experienced over transplant assessment.
Friday, August 6, 2010
Discouraged
Yesterday was my first appointment at the transplant hospital. I was eerily excited. Maybe because I have so many friends who's lives have been enriched a hundredfold by transplant, maybe because this signified my own growth mentally about the surgery, or maybe it was just because I had heard they had a starbucks. Nevertheless, despite the early start time, it was going to be a positive day.
Mike and I stayed at a hotel once again to lessen our missed hours of sleep, and to gain some enjoyment out of the experience. Thursday morning started with pfts, which were nothing like what I'm used to at my regular clinic hospital. This was maybe 5 or 6 times the tests and work. I was actually in pain after the second last test and was starting to worry that maybe I should have brought my oxygen. The tech reassured me, however wasn't so friendly so I was hardly calmed by his words. The good news was, my first blow for the FEV1 test showed a stable 0.83 litres, and after the nightmare of a cold I had, followed by two rounds of different oral drugs, I was relieved. I managed to squeeze out a 0.85 before we were done with that one.
I had an uneventful 6 minute walk (desatting to 83--DEF shouldve brought the o2) and then was off to the 12th floor to meet a doctor for ... well I wasn't really sure what it was, I just knew it was our initial informative introductory meeting. My parents drove up for this part too. We discussed my medical history, my "hobbies" (none--perhaps I should have 'sold' myself here), questions we had, and watched a slideshow of transplant facts as well. At the end of this meeting, the doctor tells me that we will not be going any further with the assessment, as not only am i "early" to be assessed (as is typical--he mentions) but I am "early for early". Riiiiiiiight. I snapped. I was so upset and frustrated and started to let it out as cooly as I could manage. I told him how I have been doing assessment testing leading up to this meeting such as a CT sinus and an ultrasound. Mike took a day off for that. I asked why my clinic doctors could not make the decision he made after all of this effort, when all of the information he gathered, they already knew?
I truly believe this comes down to the fact that I switched my meeting. I was supposed to do it next week, with a different doctor. It was supposed to be a bridge doctor who works both at my clinic hospital AND the transplant hospital, and has met me several times over the years. SHE wouldn't have found anything I said suprising, and I can't imagine her turning me away after knowing full-well she could have saved me the trouble all together at my clinic. I have so many words for these doctors, and could not be more frustrated with my life right now.
Mike and I stayed at a hotel once again to lessen our missed hours of sleep, and to gain some enjoyment out of the experience. Thursday morning started with pfts, which were nothing like what I'm used to at my regular clinic hospital. This was maybe 5 or 6 times the tests and work. I was actually in pain after the second last test and was starting to worry that maybe I should have brought my oxygen. The tech reassured me, however wasn't so friendly so I was hardly calmed by his words. The good news was, my first blow for the FEV1 test showed a stable 0.83 litres, and after the nightmare of a cold I had, followed by two rounds of different oral drugs, I was relieved. I managed to squeeze out a 0.85 before we were done with that one.
I had an uneventful 6 minute walk (desatting to 83--DEF shouldve brought the o2) and then was off to the 12th floor to meet a doctor for ... well I wasn't really sure what it was, I just knew it was our initial informative introductory meeting. My parents drove up for this part too. We discussed my medical history, my "hobbies" (none--perhaps I should have 'sold' myself here), questions we had, and watched a slideshow of transplant facts as well. At the end of this meeting, the doctor tells me that we will not be going any further with the assessment, as not only am i "early" to be assessed (as is typical--he mentions) but I am "early for early". Riiiiiiiight. I snapped. I was so upset and frustrated and started to let it out as cooly as I could manage. I told him how I have been doing assessment testing leading up to this meeting such as a CT sinus and an ultrasound. Mike took a day off for that. I asked why my clinic doctors could not make the decision he made after all of this effort, when all of the information he gathered, they already knew?
I truly believe this comes down to the fact that I switched my meeting. I was supposed to do it next week, with a different doctor. It was supposed to be a bridge doctor who works both at my clinic hospital AND the transplant hospital, and has met me several times over the years. SHE wouldn't have found anything I said suprising, and I can't imagine her turning me away after knowing full-well she could have saved me the trouble all together at my clinic. I have so many words for these doctors, and could not be more frustrated with my life right now.
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