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.
Monday, July 26, 2010
The joys of assessing oneself
I've got to give you kids a shout out. Though I long to be a successful one of you one day, I can't help but be overwhelmed with the crapload of unknown you have to deal with. There is nothing worse in my opinion and yes, this leads into whats going on with me lately.
So remember that cold I had? The really bad one that I so cooly managed by calling in an order for some oral antibiotics approximately an hour into mild lung symptoms. Sure I had to overemphasize those mild symptoms a bit to achieve this.. but a few days later I knew I was the bees knees for carrying out this brilliant plan of striking before being stricken.
Recovery went something like this: horrible weird symptoms of nausea (and actual projectile vomiting) and horrible headaches for 3-4 days to the point that i called in to find out if i was overdosing. Apparently the dose was upped however for this drug.. so i was spot on. Finally my body adjusted and I started experiencing a sudden disappearance of my nighttime cough. I pee at 3-4 hour intervals at night. I seriously think this is an issue, but no one has found anything as of yet. Anyways, during these pee times I usually cough as a result of moving myself to the bathroom and i guess shaking up the stagnant mucus from the past few hours of sleep. It is basically a knee-jerk reaction that I cannot control, and at-best, I force it to stay in until I reach the bathroom in the hopes that I won't wake up Mike. After about 5 days of Septra, I was not needing to cough at all when I woke up to pee. Something I tend to notice ONLY on I.v.s these days. There was a very slight tickle, but since I was able to easily overcome it.. I did not cough and enjoyed the ease-back-into-sleep that most healthy people enjoy when they are startled awake. (as opposed to the heart-jolting, eye-bugging result of coughing your brains out.. wakes up your whole system).
ANYWAYS, so this was all going along quite nicely.. until it wasn't. I can't say the turnaround really was blatant.. but when I went to Toronto for a night stay in a hotel a week ago yesterday, I felt sub-par. I look it in the pics too. Oddly, the night-cough was still fairly gone. I did some transplant testing on the Monday and asked if I could do pfts since I was there and hadn't done pfts in a month, but was denied. 3 days later, I woke up at 6am with a stabbing pain in my left side/back which I recognized all-too-well from winter 08 and my last ever day of work. I called clinic and was told to come in immediately for an xray to rule out pneumothorax. The xray showed "no change" from the one I had done a month before for transplant testing. This left it up to symptoms. I felt relatively normal in the individual factors they tend to ask about such as 1.volume of sputum, 2.colour of sputum (i mentioned that it had been brown a few days earlier) 3. frequency of cough 4.appetite and 5.energy level. The beds were also full. So, if I had wanted to be admitted, which I never do, I would've had to sit in emergency in order to get a bed on another floor, which I have never done yet. I settled for some Cipro, as I was pretty sure what happened is that the septra killed my peaceful little s.maltophilia and i was left with my trace pseudomonas that had started a party in its absence.
This is the longest, boringest blog ever.. but I am treating it like a diary because I am so frustrated and want to keep a health record. So I apologize. i promise to put upa silly picture next blog. Ok a picture.. maybe not silly.
Here we are, 4 days after starting Cipro. Pain left after 48 hours of the drug, sputum has been difficult to move (since the pain arrived), but has progressively got lighter, and easier to move. I told the doctor on Thursday that I would come to clinic on Tuesday regardless of how I felt, because I felt it was important to follow up, and see my lung function after these weeks and weeks of dealing with Cold repurcussions.
I'm struggling with this now because I waited till this afternoon to try and book it, and know that the beds are full on the ward still.. sooooo basically if I go to clinic and get a semi-not-great number (as in... .78 versus my last clinic of .84) I won't know what to do because I feel "alright" (I think?) and I don't feel its worth goign through emergency when things are "alright"... and ending up on a different ward where I'll be scared out of my wits because I've only ever had 5 admissions and none of them were off of my regular ward. AHHH. Not to mention I MAY have an appt at the transplant hospital as soon as next week for lung function anyways. Why not just wait and then assess myself then? Maybe even then the beds will be empty if I should need one? I also still have over a week of cipro left.. I'll be "safe" in terms of holding down the infection to at least a manageable level, yes? *waaaaaaaaaaaaaaaaaaaaah*. I just want someone to tell me what I need to do with confidence.
So remember that cold I had? The really bad one that I so cooly managed by calling in an order for some oral antibiotics approximately an hour into mild lung symptoms. Sure I had to overemphasize those mild symptoms a bit to achieve this.. but a few days later I knew I was the bees knees for carrying out this brilliant plan of striking before being stricken.
Recovery went something like this: horrible weird symptoms of nausea (and actual projectile vomiting) and horrible headaches for 3-4 days to the point that i called in to find out if i was overdosing. Apparently the dose was upped however for this drug.. so i was spot on. Finally my body adjusted and I started experiencing a sudden disappearance of my nighttime cough. I pee at 3-4 hour intervals at night. I seriously think this is an issue, but no one has found anything as of yet. Anyways, during these pee times I usually cough as a result of moving myself to the bathroom and i guess shaking up the stagnant mucus from the past few hours of sleep. It is basically a knee-jerk reaction that I cannot control, and at-best, I force it to stay in until I reach the bathroom in the hopes that I won't wake up Mike. After about 5 days of Septra, I was not needing to cough at all when I woke up to pee. Something I tend to notice ONLY on I.v.s these days. There was a very slight tickle, but since I was able to easily overcome it.. I did not cough and enjoyed the ease-back-into-sleep that most healthy people enjoy when they are startled awake. (as opposed to the heart-jolting, eye-bugging result of coughing your brains out.. wakes up your whole system).
ANYWAYS, so this was all going along quite nicely.. until it wasn't. I can't say the turnaround really was blatant.. but when I went to Toronto for a night stay in a hotel a week ago yesterday, I felt sub-par. I look it in the pics too. Oddly, the night-cough was still fairly gone. I did some transplant testing on the Monday and asked if I could do pfts since I was there and hadn't done pfts in a month, but was denied. 3 days later, I woke up at 6am with a stabbing pain in my left side/back which I recognized all-too-well from winter 08 and my last ever day of work. I called clinic and was told to come in immediately for an xray to rule out pneumothorax. The xray showed "no change" from the one I had done a month before for transplant testing. This left it up to symptoms. I felt relatively normal in the individual factors they tend to ask about such as 1.volume of sputum, 2.colour of sputum (i mentioned that it had been brown a few days earlier) 3. frequency of cough 4.appetite and 5.energy level. The beds were also full. So, if I had wanted to be admitted, which I never do, I would've had to sit in emergency in order to get a bed on another floor, which I have never done yet. I settled for some Cipro, as I was pretty sure what happened is that the septra killed my peaceful little s.maltophilia and i was left with my trace pseudomonas that had started a party in its absence.
This is the longest, boringest blog ever.. but I am treating it like a diary because I am so frustrated and want to keep a health record. So I apologize. i promise to put upa silly picture next blog. Ok a picture.. maybe not silly.
Here we are, 4 days after starting Cipro. Pain left after 48 hours of the drug, sputum has been difficult to move (since the pain arrived), but has progressively got lighter, and easier to move. I told the doctor on Thursday that I would come to clinic on Tuesday regardless of how I felt, because I felt it was important to follow up, and see my lung function after these weeks and weeks of dealing with Cold repurcussions.
I'm struggling with this now because I waited till this afternoon to try and book it, and know that the beds are full on the ward still.. sooooo basically if I go to clinic and get a semi-not-great number (as in... .78 versus my last clinic of .84) I won't know what to do because I feel "alright" (I think?) and I don't feel its worth goign through emergency when things are "alright"... and ending up on a different ward where I'll be scared out of my wits because I've only ever had 5 admissions and none of them were off of my regular ward. AHHH. Not to mention I MAY have an appt at the transplant hospital as soon as next week for lung function anyways. Why not just wait and then assess myself then? Maybe even then the beds will be empty if I should need one? I also still have over a week of cipro left.. I'll be "safe" in terms of holding down the infection to at least a manageable level, yes? *waaaaaaaaaaaaaaaaaaaaah*. I just want someone to tell me what I need to do with confidence.
Monday, July 12, 2010
Cigarettes
No, not me. Well technically I took one puff of one cigarette once in my life. I was 19 I think. It was a statement of rebellion, and being the overly-mature-but-says-too-much person I've always been, I stated it as such right before having my little experience. Impressing, I'm sure, the genuine teenage smokers I was surrounded by at my work Christmas party. Not.
I had a similar experience today when I had the opportunity to hold a family member's almost-full cigarette package in my hand and examine it closely without interuption. I noticed all the warnings and all the stats all over the box? pack? carton? If I were a smoker it would probably irritate me that I'm meant to feel so bad about something I either A. choose to do despite knowing the risks (everyone does, lets face it) or B. Would like to quit but am struggling with the process. In neither case does it make sense to make people feel bad about themselves right there on the container in my opinion. If it worked, it would be a different story.
I also was marvelling at how smooth and pleasing the container is to my hand. The cigarettes neatly packed in fancy-ish looking silver paper. It was like looking at a unicorn or.. a hut in Africa. The kind of awe thats not envious nor... the opposite of envious , just the pure and simple awe of a world that isn't yours. It's how I felt when I used to watch Paris Hilton's The Simple Life show. Kind of like.. those girls are so petty to an extreme that doesn't feel possible with the responsibility of CF on my shoulders. I think thats why I loved that show.
This smoking family member brings me what feels like even MORE responsibility too. Knowing the struggles of lung disease, I feel an even greater debt to convince people to quit smoking. The problem is, I don't know whats appropriate for how hard to push. I DO know that there is no downside to the person quitting, and the only risk is our relationship perhaps. Maybe if I had not been forced to sell cigarettes for 3 years when I worked at a grocery store I wouldn't have burnt out all my passion with regards to deterring people. I had to suppress it then. No one wants their cashier bashing their lifestyle choices. You may just as well hammer them with "oooh.. hamburgers again, Miss Smith?" or "Didn't you buy a jumbo pack of condoms LAST week when you were with that nice blonde girl, Mr. Jones?". It just doesn't go over well.
I only hope that I can start coming up with some ideas to help people I love avoid my own fate or worse.
I had a similar experience today when I had the opportunity to hold a family member's almost-full cigarette package in my hand and examine it closely without interuption. I noticed all the warnings and all the stats all over the box? pack? carton? If I were a smoker it would probably irritate me that I'm meant to feel so bad about something I either A. choose to do despite knowing the risks (everyone does, lets face it) or B. Would like to quit but am struggling with the process. In neither case does it make sense to make people feel bad about themselves right there on the container in my opinion. If it worked, it would be a different story.
I also was marvelling at how smooth and pleasing the container is to my hand. The cigarettes neatly packed in fancy-ish looking silver paper. It was like looking at a unicorn or.. a hut in Africa. The kind of awe thats not envious nor... the opposite of envious , just the pure and simple awe of a world that isn't yours. It's how I felt when I used to watch Paris Hilton's The Simple Life show. Kind of like.. those girls are so petty to an extreme that doesn't feel possible with the responsibility of CF on my shoulders. I think thats why I loved that show.
This smoking family member brings me what feels like even MORE responsibility too. Knowing the struggles of lung disease, I feel an even greater debt to convince people to quit smoking. The problem is, I don't know whats appropriate for how hard to push. I DO know that there is no downside to the person quitting, and the only risk is our relationship perhaps. Maybe if I had not been forced to sell cigarettes for 3 years when I worked at a grocery store I wouldn't have burnt out all my passion with regards to deterring people. I had to suppress it then. No one wants their cashier bashing their lifestyle choices. You may just as well hammer them with "oooh.. hamburgers again, Miss Smith?" or "Didn't you buy a jumbo pack of condoms LAST week when you were with that nice blonde girl, Mr. Jones?". It just doesn't go over well.
I only hope that I can start coming up with some ideas to help people I love avoid my own fate or worse.
Sunday, July 11, 2010
The summer cold cont'd
Sometimes I still feel like a CF newbie. I ended up calling in a request for some oral antibiotics at the first sign of lung symptoms, and I'm glad I did, because I'm still shaking off parts of this cold almost a week later. I was prescribed Septra double strength, which is one of the old standby's for me but soon found that I was experiencing debilitating nausea and headaches. As it persisted for a second day, I phoned the nurse back to question whether something was wrong.. She proceeded to tell me that the protocol for dosing CF'ers with this particular drug had just recently been changed (doubled). That was my 'ahhhh' moment.
I spent the next few hours worrying that I was, in actual fact, overdosing because of my lack of confidence in the nurses answer when I said "did the doctor take into account that im tiny?' and she replied "i THINK dr. so and so knows youre small...'. It was a fellow, not my regular doctor.. so i was a bit worried. As it turned out, the best advice I got came from facebook CF'ers who told me that when your body reacts badly to a drug, it usually 'adjusts' after a couple days and turns out they were right. Its much more tolerable now.
There's even less than usual non-CF life going on for me right now since this past week I didn't even step into the car or outside because of how i was feeling as well as the extreme heat. This week I'm thinking of a place I love up north called Miner's Bay Lodge where I spent the past 16 or so summers (for a week) on the beach, the boat and doing activities. We elected not to go this year for multiple reasons but a big part of it was me not feeling confident I can handle a place with no air conditioning and steep hills anymore. We will see what next year brings.
I spent the next few hours worrying that I was, in actual fact, overdosing because of my lack of confidence in the nurses answer when I said "did the doctor take into account that im tiny?' and she replied "i THINK dr. so and so knows youre small...'. It was a fellow, not my regular doctor.. so i was a bit worried. As it turned out, the best advice I got came from facebook CF'ers who told me that when your body reacts badly to a drug, it usually 'adjusts' after a couple days and turns out they were right. Its much more tolerable now.
There's even less than usual non-CF life going on for me right now since this past week I didn't even step into the car or outside because of how i was feeling as well as the extreme heat. This week I'm thinking of a place I love up north called Miner's Bay Lodge where I spent the past 16 or so summers (for a week) on the beach, the boat and doing activities. We elected not to go this year for multiple reasons but a big part of it was me not feeling confident I can handle a place with no air conditioning and steep hills anymore. We will see what next year brings.
Monday, July 5, 2010
Cold/Hot July
Hi folks!
Had an updated blog post on the go, but I decided to randomly get picky about it for once and didn't quite like it so we'll save it for another day maybe.
My clinic went, in a nutshell, great. Most of my tests were average result-wise (pfts .84 litres) but we had a very short wait time at clinic (VERY rare) and Mike got his genetic CF testing done so all in all a great day. I did some of my transplant tests and have some more coming up on Monday July 19th so we're on the go with that too.
Unfortunately for me, I got a random, bad cold last night from goodness-knows-where. As far as I know, no one I know is sick and I really hardly go out to anywhere populated so it must just be a result of poorer handwashing/vitamin taking? I just passed the icky sniffles/sneeze/sore throat phase and am now starting to arm myself for the scarier potential lung involvement.
In other "cold" news, as I understand it there's been a recent lung "drought" and this just plain blows since a few of my friends are listed right now BUT last night "H", who I sometimes call "jumbleberry juice" to my mom, got her call for new lungs after a brief but difficult wait! She's currently out of surgery and heading to the ICU. SO happy for her!
Had an updated blog post on the go, but I decided to randomly get picky about it for once and didn't quite like it so we'll save it for another day maybe.
My clinic went, in a nutshell, great. Most of my tests were average result-wise (pfts .84 litres) but we had a very short wait time at clinic (VERY rare) and Mike got his genetic CF testing done so all in all a great day. I did some of my transplant tests and have some more coming up on Monday July 19th so we're on the go with that too.
Unfortunately for me, I got a random, bad cold last night from goodness-knows-where. As far as I know, no one I know is sick and I really hardly go out to anywhere populated so it must just be a result of poorer handwashing/vitamin taking? I just passed the icky sniffles/sneeze/sore throat phase and am now starting to arm myself for the scarier potential lung involvement.
In other "cold" news, as I understand it there's been a recent lung "drought" and this just plain blows since a few of my friends are listed right now BUT last night "H", who I sometimes call "jumbleberry juice" to my mom, got her call for new lungs after a brief but difficult wait! She's currently out of surgery and heading to the ICU. SO happy for her!
Subscribe to:
Posts (Atom)