It's been a whole bunch of awful weeks. Today I feel the need to summarize them all under the term "coping", because I am realizing how important that little skill is. It might just be the most important thing a child learns.
I feel I've been out of the awful stuff for about a week now. Yet today coping was up there in lessons all around me. I spent the last 24 hours being enthralled by the youtube sensation Talia Joy. A 13 year old cancer-fighter who I've heard of but went looking for only after hearing that she had died this week. I wanted to see what all the fuss was about, and boy was it worth the fuss. She embodied everything that is coping with the most difficult of diagnosis at the toughest of ages. She reveals that she clung to makeup after a family friend who also had cancer showed her some makeup tricks. It got me thinking today.
Sometimes I wonder why people act out in such seemingly small circumstances. The people we call dramaqueens, or those who get a little too angry at others and seem so self-centered. The substance abusers, the hermits. We all have our thing. And when we don't, the worst ones emerge. At my age this shouldn't be a revelation, but when I look at myself, and those closest to me, it is. Examining coping helps me help the ones I love. Well sorta. It can be a bit frustrating when you realize what someone has lacked and simultaneously realize that you cant grow it in them the same way as an adult as one would get it as a child.
Point is, we all need to look at coping over and over again. Just when you think you've learned it, something harder can come at you. There's no shame in taking a page from all the best books and forming a bulletproof coping encyclopedia for yourself.
Friday, July 19, 2013
Friday, May 31, 2013
31
I resisted the urge to write "dead by thirty one" since im pretty sure thats a band that's popular right now. Maybe they aren't popular.. or maybe its a song... what do I know.. I'm friggin 31 (tomorrow).
Last year I was pumped about my birthday and I fear it may be the last time I'll ever feel that way. I can't picture a situation where I'll be excited for it again. I'm not saying that I'm dreading it.. I also can't see myself ever being dejected about being "old".. since being old is something that's such a gift. Shoutout to my sparkly-winged angel Carla for cementing that one in my soul.
Ive had a rough week. It went down kind of predictably I guess.. the last motivation I felt being Saturday where I bounced around and announced to Mike that he should ask me for anything (keep your thoughts clean readers) because I was "in a great mood". I made a bunch of different foods that day.. it was fun. Sunday came.. and the clouds rolled in in my mind. Sunday was the CF walk, which I again didn't attend. I don't miss anything particular about being at the zoo.. in fact its downright repetitive and busy. It just kickstarted a thought process that hasn't ceased. I think it had a few other components to it too... such as how on Friday night I went to my sisterinlaws Stag n Doe and had my first alcoholic drink in a year and got a taste of youth and fun again.. and kept up with shouting over the loud music sensationally well, I might add.
Anyhow.. Id like to think that I'm starting a new week and year tomorrow.. the physical rain clouds and muggy weather needs to take a break.. I need a good massage.. and some pampering (my gift from my sis in law is gonna be a pedicure) and to get over myself before my TGH appointment. It felt like eternity from my last St.Mikes visit to this TGH one.. I had so much to experience in between.. one thing being my first experience of a pregnancy ultrasound (cause those echocardiograms just aren't as memorable). Turned out, however, that while the ultrasound was very moving, especailly at first, that sis and I were blessed with a newbie of a technician, and it was so poorly done that she has to have it redone.. and we didn't even find out the gender of baby G. Boo! Bad week all over. Have a drink and a dance for me tomorrow if you are so inclined.. celebrate living :)
Last year I was pumped about my birthday and I fear it may be the last time I'll ever feel that way. I can't picture a situation where I'll be excited for it again. I'm not saying that I'm dreading it.. I also can't see myself ever being dejected about being "old".. since being old is something that's such a gift. Shoutout to my sparkly-winged angel Carla for cementing that one in my soul.
Ive had a rough week. It went down kind of predictably I guess.. the last motivation I felt being Saturday where I bounced around and announced to Mike that he should ask me for anything (keep your thoughts clean readers) because I was "in a great mood". I made a bunch of different foods that day.. it was fun. Sunday came.. and the clouds rolled in in my mind. Sunday was the CF walk, which I again didn't attend. I don't miss anything particular about being at the zoo.. in fact its downright repetitive and busy. It just kickstarted a thought process that hasn't ceased. I think it had a few other components to it too... such as how on Friday night I went to my sisterinlaws Stag n Doe and had my first alcoholic drink in a year and got a taste of youth and fun again.. and kept up with shouting over the loud music sensationally well, I might add.
Anyhow.. Id like to think that I'm starting a new week and year tomorrow.. the physical rain clouds and muggy weather needs to take a break.. I need a good massage.. and some pampering (my gift from my sis in law is gonna be a pedicure) and to get over myself before my TGH appointment. It felt like eternity from my last St.Mikes visit to this TGH one.. I had so much to experience in between.. one thing being my first experience of a pregnancy ultrasound (cause those echocardiograms just aren't as memorable). Turned out, however, that while the ultrasound was very moving, especailly at first, that sis and I were blessed with a newbie of a technician, and it was so poorly done that she has to have it redone.. and we didn't even find out the gender of baby G. Boo! Bad week all over. Have a drink and a dance for me tomorrow if you are so inclined.. celebrate living :)
Monday, April 22, 2013
Update
I apologize for not following through with the April 9th progress report. Clinic was not good and I slid into a bit of a down phase.
My lung function is now lower than it was prior to my hospital admission despite anything I tried to do. Oh right.. what I tried to do lol... I was exercising. I had a whole plan mapped out. It was a modified program to gradually increase exercise time and resistance for I believe 12 weeks total. I was using my stationary bike. I also had a weight-lifting plan as well.
As predicted, as soon as I got the bad news, I dropped everything. I've really never gotten much headway from ivs for one reason or another, and therefore this cycle happens everytime I go in.. but this time was certainly the worst since I tried harder than ever before.
Anyhow, I'm now focusing more on the anxiety aspect of my health. I'm trying to be busy.. I'm trying to see more people and go out more socially. I'm trying to get exercise from doing chores and feel the satisfaction that comes from getting things done. I'm also working on some mindfulness techniques to handle stress and anxiety.
All in all.. I'm ok... I'm just trying to change how I measure success in my life.
My lung function is now lower than it was prior to my hospital admission despite anything I tried to do. Oh right.. what I tried to do lol... I was exercising. I had a whole plan mapped out. It was a modified program to gradually increase exercise time and resistance for I believe 12 weeks total. I was using my stationary bike. I also had a weight-lifting plan as well.
As predicted, as soon as I got the bad news, I dropped everything. I've really never gotten much headway from ivs for one reason or another, and therefore this cycle happens everytime I go in.. but this time was certainly the worst since I tried harder than ever before.
Anyhow, I'm now focusing more on the anxiety aspect of my health. I'm trying to be busy.. I'm trying to see more people and go out more socially. I'm trying to get exercise from doing chores and feel the satisfaction that comes from getting things done. I'm also working on some mindfulness techniques to handle stress and anxiety.
All in all.. I'm ok... I'm just trying to change how I measure success in my life.
Tuesday, March 19, 2013
TBA
Things culminated in a hospital stay. Been out of there 2 weeks now and trying something new.. or.. something old with new motivation. Progress Report April 9. Motivation tends to be fleeting so I'm not interested in blogging about what I'm doing until it sticks!
Thursday, February 7, 2013
Symptom Symphony
This past month has been trying for me.
On the heels of hearing about my mysterious sputum bug, "Ochrobactrum Antrhopi", I visited clinic to find that my lung function was down, weight was up, bloodwork was off (wbc 13). Doctor suggested we do nothing for 2 weeks to see if it was merely a bad day. I frequently have clinics where things are *a bit* down but I feel perfectly fine, and this was no exception. The number drop was a bit more severe than I'm used to, but it didnt seem to phase my doc.
Two weeks later, I come back to clinic expecting improvement despite changing nothing in the prior two week period. Wrong. Same situation to the detail. This time I saw a different doctor, and we decided that oral antibiotics were in order since in the past they have worked well and thus we would avoid the need for ivs (which I have not had in over 2 years).
My first 2-3 days on the two drugs was utterly shocking in the effectiveness I felt. I'm used to orals helping, but this was a complete whoosh of energy and ... how can I explain... muscle loosening that I can only compare to how I've felt once or twice on iv drugs (circa 2005/2007). My body exudes clues that drugs are doing their best work. My tongue changes from gray/green/yellow to perfect pink, and the other key clue is sadly a huge disruption in my bowels... but normally its all par for the course. I really wish I could put words to the relief of good antibiotics. Even at my low lung function I laid in bed those first few nights raving (and honestly I could almost cry) at how relaxed my body felt. I lounged in the strangest positions on the bed like a 12 year old watching tv. Because I could. Its amazing the tension that we live with in our bodies with CF. All involuntary protection of our brittle sick little lungs.
Unfortunately, that Friday I began to feel off.. but not in a strong enough way to know immediately that it was a cold. Antibiotics, as far as I know, mess with your nutrient status for a few reasons. The bowel disruption is one of them, and therefore immunity decreases. On top of this, when I'm trying to handle my normal routine and add in two twice-a-day meds which ideally are taken hours away from multivitamins and milk (for best performance), I tend to let some things go by the wayside (like careful frequent handwashing). needless to say, I caught this cold, and then seemingly got over it in a couple days.
Since then, its been day after day of new symptoms. One day I'll be short of breath, the next day I'll have a headache and acid reflux. Virtually everyday I have painful gas at night and have had a couple nights with only 2 or 3 hours of sleep because of this. I try and eat yogurt, and probiotics, but its really hard to keep up with it all. I'm finding my physio is lacking, I haven't done Cayston in a couple days, etc etc.
now I have just 4 days till clinic to try and get back to how I felt at my peak and although I was soldier'ing on determinedly for awhile, I'm doubting thats possible at this point.
All this to say that I see now that there is a limit to what a person can do and handle. I know there's so much worse that has happened to friends at my lung function, and I realize that the doctors really are right when they say that there comes a point where transplant is the easy choice because of this whole mess.
On the heels of hearing about my mysterious sputum bug, "Ochrobactrum Antrhopi", I visited clinic to find that my lung function was down, weight was up, bloodwork was off (wbc 13). Doctor suggested we do nothing for 2 weeks to see if it was merely a bad day. I frequently have clinics where things are *a bit* down but I feel perfectly fine, and this was no exception. The number drop was a bit more severe than I'm used to, but it didnt seem to phase my doc.
Two weeks later, I come back to clinic expecting improvement despite changing nothing in the prior two week period. Wrong. Same situation to the detail. This time I saw a different doctor, and we decided that oral antibiotics were in order since in the past they have worked well and thus we would avoid the need for ivs (which I have not had in over 2 years).
My first 2-3 days on the two drugs was utterly shocking in the effectiveness I felt. I'm used to orals helping, but this was a complete whoosh of energy and ... how can I explain... muscle loosening that I can only compare to how I've felt once or twice on iv drugs (circa 2005/2007). My body exudes clues that drugs are doing their best work. My tongue changes from gray/green/yellow to perfect pink, and the other key clue is sadly a huge disruption in my bowels... but normally its all par for the course. I really wish I could put words to the relief of good antibiotics. Even at my low lung function I laid in bed those first few nights raving (and honestly I could almost cry) at how relaxed my body felt. I lounged in the strangest positions on the bed like a 12 year old watching tv. Because I could. Its amazing the tension that we live with in our bodies with CF. All involuntary protection of our brittle sick little lungs.
Unfortunately, that Friday I began to feel off.. but not in a strong enough way to know immediately that it was a cold. Antibiotics, as far as I know, mess with your nutrient status for a few reasons. The bowel disruption is one of them, and therefore immunity decreases. On top of this, when I'm trying to handle my normal routine and add in two twice-a-day meds which ideally are taken hours away from multivitamins and milk (for best performance), I tend to let some things go by the wayside (like careful frequent handwashing). needless to say, I caught this cold, and then seemingly got over it in a couple days.
Since then, its been day after day of new symptoms. One day I'll be short of breath, the next day I'll have a headache and acid reflux. Virtually everyday I have painful gas at night and have had a couple nights with only 2 or 3 hours of sleep because of this. I try and eat yogurt, and probiotics, but its really hard to keep up with it all. I'm finding my physio is lacking, I haven't done Cayston in a couple days, etc etc.
now I have just 4 days till clinic to try and get back to how I felt at my peak and although I was soldier'ing on determinedly for awhile, I'm doubting thats possible at this point.
All this to say that I see now that there is a limit to what a person can do and handle. I know there's so much worse that has happened to friends at my lung function, and I realize that the doctors really are right when they say that there comes a point where transplant is the easy choice because of this whole mess.
Thursday, January 3, 2013
2013
Life is the same. Stable health and I've thus far avoided the nasty flu even without a flu shot. My clinic didn't have any back in the fall and I've failed to fight to get one any other way.
Living in the daylight hours like normal people due to my husbands temporary new job has become very normal and enjoyable. Unfortunately, we found out yesterday that this all ends on April 1st. Once again I'm happy to have forced change in life ahead of us to keep things spicy but I only hope that the spring will have something positive to offer and not just things being taken away from us/him.
About a month ago Clinic called me to tell me I was growing a new bug. Something environmental that was "mild" growth but still it was disconcerting. I planned an immediate appointment with them but they assured me that if I was feeling fine it could wait until after Christmas. I go in about a week and we'll see where I'm at. I'm actually attributing this to my pet mice I bought in October or so. Needless to say this clinic will be one of the more interesting ones.
Other than that nothing much is going on. I'm thrilled to feel confident that I will get through yet another winter unlisted for transplant. I really do hope that when the day comes it will come in any of the 8 months that are not prone to snowstorms. It's hard to believe that when I was assessed I stressfully pleaded to be able to wait to list until my beautiful nephew was born, and he'll be 2 in July!
Speaking of babies, it seems round 2 is starting for my family and friends. Many people are pregnant with their second and I feel like I'm going through the season of mild grief all over again that I can't join them as I continue to travel my newly-entered 30's. It's not as bad as the first time I felt this jealousy, but at the same time its a bit different because of transplant hovering farther from my thoughts in recent months. The illusion that that big hurdle is not in my field of view. Relatedly, although I still experience anxiety from time to time, I find its easier to tackle lately too. Hard proof that its directly related to how sick I perceive myself to be.
Living in the daylight hours like normal people due to my husbands temporary new job has become very normal and enjoyable. Unfortunately, we found out yesterday that this all ends on April 1st. Once again I'm happy to have forced change in life ahead of us to keep things spicy but I only hope that the spring will have something positive to offer and not just things being taken away from us/him.
About a month ago Clinic called me to tell me I was growing a new bug. Something environmental that was "mild" growth but still it was disconcerting. I planned an immediate appointment with them but they assured me that if I was feeling fine it could wait until after Christmas. I go in about a week and we'll see where I'm at. I'm actually attributing this to my pet mice I bought in October or so. Needless to say this clinic will be one of the more interesting ones.
Other than that nothing much is going on. I'm thrilled to feel confident that I will get through yet another winter unlisted for transplant. I really do hope that when the day comes it will come in any of the 8 months that are not prone to snowstorms. It's hard to believe that when I was assessed I stressfully pleaded to be able to wait to list until my beautiful nephew was born, and he'll be 2 in July!
Speaking of babies, it seems round 2 is starting for my family and friends. Many people are pregnant with their second and I feel like I'm going through the season of mild grief all over again that I can't join them as I continue to travel my newly-entered 30's. It's not as bad as the first time I felt this jealousy, but at the same time its a bit different because of transplant hovering farther from my thoughts in recent months. The illusion that that big hurdle is not in my field of view. Relatedly, although I still experience anxiety from time to time, I find its easier to tackle lately too. Hard proof that its directly related to how sick I perceive myself to be.
Thursday, September 27, 2012
Fall Again
Life's inevitable change is scary, sad and exciting all in one. Recently we had a rather large one in that my husbands job went from steady afternoons to steady dayshift. These new hours are unbelievably strange for us, and for me, harder to adjust to than I thought.
The excitement which came with the new opportunities (dinner with husband, getting CF stuff done alone and feeling better for my first encounter with husband of the day, ability to join my mom at the mall weekly, access to the occasional nighttime family events) has dimmed significantly in the not-yet 2 weeks that we've had it. That said, its wonderful to have this for the next 8 months and then meet at another unknown crossroads. It brings something to my life in particular that was a little bit missing in the recent past.. an unknown that isnt too scary (like my health).
Lately Ive sort of embraced two things I think. One is being twelve again.. My favourite age. I'm letting myself enjoy little whims, like buying a pair of mice and even considering breeding them once for fun.. with a male.. they are female. It wasn't a thought-out plan.. it was just something that happened. It might be an outlet for my constant desire for motherhood.. another creature to care for. Especially since my dog only really proves to me further how I am not strong enough to care for something (I can't walk him comfortably/at all primarily because hes an aggressively energetic dog). I really think thats part of it. These mice I can fully care for and feel accomplished..
Another thing I think happened subconsciously, is recently I felt I had a bit of a break in my anxiety symptoms. I can't be sure why, but I think buying the mice was my own way of saying "ok, im doing a little better.. im gonna take on more". That and I am not sure if I will want to have rodents ever after transplant, and so I'm "getting it out of my system". Regardless, its a new thing, and I like new things. I've also been honing my skills in the dealfinding department. Not even just deals.. Ive found ways to buy and sell a couple times that make me feel like I have a business sense. Id like to explore that area more too.. for my mental health now, and maybe a viable career direction in the future.
I'm walking into fall in the same place healthwise. I had appointments with both hospitals pretty close recently and things are stable as always, and I'm setting my focus on getting to at least february without anything major happening. Every year my goal is simply to not need listing at the worst time of year. Thats it. My docs wise advice. Of course its impossible to guarantee, but theres no harm in trying.
The excitement which came with the new opportunities (dinner with husband, getting CF stuff done alone and feeling better for my first encounter with husband of the day, ability to join my mom at the mall weekly, access to the occasional nighttime family events) has dimmed significantly in the not-yet 2 weeks that we've had it. That said, its wonderful to have this for the next 8 months and then meet at another unknown crossroads. It brings something to my life in particular that was a little bit missing in the recent past.. an unknown that isnt too scary (like my health).
Lately Ive sort of embraced two things I think. One is being twelve again.. My favourite age. I'm letting myself enjoy little whims, like buying a pair of mice and even considering breeding them once for fun.. with a male.. they are female. It wasn't a thought-out plan.. it was just something that happened. It might be an outlet for my constant desire for motherhood.. another creature to care for. Especially since my dog only really proves to me further how I am not strong enough to care for something (I can't walk him comfortably/at all primarily because hes an aggressively energetic dog). I really think thats part of it. These mice I can fully care for and feel accomplished..
Another thing I think happened subconsciously, is recently I felt I had a bit of a break in my anxiety symptoms. I can't be sure why, but I think buying the mice was my own way of saying "ok, im doing a little better.. im gonna take on more". That and I am not sure if I will want to have rodents ever after transplant, and so I'm "getting it out of my system". Regardless, its a new thing, and I like new things. I've also been honing my skills in the dealfinding department. Not even just deals.. Ive found ways to buy and sell a couple times that make me feel like I have a business sense. Id like to explore that area more too.. for my mental health now, and maybe a viable career direction in the future.
I'm walking into fall in the same place healthwise. I had appointments with both hospitals pretty close recently and things are stable as always, and I'm setting my focus on getting to at least february without anything major happening. Every year my goal is simply to not need listing at the worst time of year. Thats it. My docs wise advice. Of course its impossible to guarantee, but theres no harm in trying.
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