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.
Friday, July 13, 2012
July already
Just a quick post (frankly, to drown the one below).
Its almost a year since my sweet little nephew was born. Unbelievable.
This has been a week of reflection following a week of stress. It's been different and interesting and I'm coming out the other side feeling somewhat refreshed. Being reminded that things have both gotten humdrum as well as "too much" simultaneously will hopefully result in some new goal or other when I am back home tomorrow (been housesitting).
My health is stable but cyclical as always on its monthly rounds from bearable to barely-so. It seems my newest cyclical symptom (pain in my right chest) isn't back the way it appeared the last two months, which is a relief.
I assume I'll be back for my bi-annual transplant visit next month, and will also be booking a regular clinic around then as well. It's probably time I discuss fall and winter again with the docs.
Its almost a year since my sweet little nephew was born. Unbelievable.
This has been a week of reflection following a week of stress. It's been different and interesting and I'm coming out the other side feeling somewhat refreshed. Being reminded that things have both gotten humdrum as well as "too much" simultaneously will hopefully result in some new goal or other when I am back home tomorrow (been housesitting).
My health is stable but cyclical as always on its monthly rounds from bearable to barely-so. It seems my newest cyclical symptom (pain in my right chest) isn't back the way it appeared the last two months, which is a relief.
I assume I'll be back for my bi-annual transplant visit next month, and will also be booking a regular clinic around then as well. It's probably time I discuss fall and winter again with the docs.
Thursday, June 28, 2012
While I ponder..
Anyone who knows me knows that one of my favourite things to do while being at this low level of health is to try and make a little extra money. I favour points sites that are easy to use, but not monotonous or time-consuming. A new Canadian company that has started strong is LikeNet. They put a twist on the typical points-delivery by directly campaigning businesses to advertise with them. The difference lies in the variety of advertising options.
Backing up a bit, as someone who simply wants to make a little cash, MY responsibility is to check in (each day ideally) and be offered points in exchange for 'liking' a company on facebook, completing a short survey (like one or two questions usually) or reading through a website in search of a cash-providing code.
If I had my own business.. or even say.. a blog (wink wink), I could decide to use my own money or even my LikeNet "points" to fund getting extra viewers to my page/blog.
For me doing things like this serve me well on a couple of levels. I feel like I'm contributing to both my own enjoyment (money for little gifts for myself on a rainy or hard day) and my families goals for the future by not limiting myself to whats available to me before I can go back to work.
I also hope that one day when I get my full life back, this time will have taught me lessons in frugality that I can condense into something usable in the busier future.
SoftCorp Media Victoria | Web Design, Social Media and More
Backing up a bit, as someone who simply wants to make a little cash, MY responsibility is to check in (each day ideally) and be offered points in exchange for 'liking' a company on facebook, completing a short survey (like one or two questions usually) or reading through a website in search of a cash-providing code.
If I had my own business.. or even say.. a blog (wink wink), I could decide to use my own money or even my LikeNet "points" to fund getting extra viewers to my page/blog.
For me doing things like this serve me well on a couple of levels. I feel like I'm contributing to both my own enjoyment (money for little gifts for myself on a rainy or hard day) and my families goals for the future by not limiting myself to whats available to me before I can go back to work.
I also hope that one day when I get my full life back, this time will have taught me lessons in frugality that I can condense into something usable in the busier future.
SoftCorp Media Victoria | Web Design, Social Media and More
Wednesday, June 20, 2012
30
I have had a lovely spring. My health has been constantly stable and positive for months overall and I've had the opportunity to do little things that make me feel I'm living my life still.
Most recently (frankly, I have the memory of a goldfish and can probably only go back maybe a month at best) I turned 30 surrounded by a small group of family and friends at my parents house. I had wished for a backyard barbeque, but the weatherman let me down and we were rained into the house. Still, we had chicken and sweet potato fries, a gorgeous cake specially-designed with a few of my faves (colour, flower), a wonderfully touching suprise of a professional photo of the kids in my life, my nephews and neice, all together, and countless more spoils that I couldn't possibly deserve.
My husband had two weeks off this spring as well, which always intimidates me because it means for two weeks I have to go without my couch-naps (we live in a very small place with no doors... so its difficult to find quiet and space). Lucky for me, hubby loves golf and spent a good amount of time doing exactly that, but we still managed to do a few interesting things together like travel to the U.S and niagara falls, the drive-in movies, etc.
Transplant of course drifts in and out of my head, muted but there. Ive recently had a new symptom that has plagued me a week out of each of the last two months (love being a woman.. NOT) and if I see it one more time I'm going to have to get concerned that my lungs are crying out for a change..
The worst thing about CF is how different everyone is. How unpredictable the course of it is. It never becomes acceptable.
When I came to write this new blog post, I caught a glimpse of a blog I used to read called "CFhusband". Tricia Lawrensons amazing triumphs over low lung function pregnancy, high risk transplant, and cancer have been a source of strength for me. Today, however, I found her in yet another position of fragility facing heavy-duty organ rejection. It saddened me to say the least. One of the big issues especially with people like myself who struggle to make the leap to listing for transplant, is whether or not its wise to subject myself to negative stories and outcomes. I've always been of the mindset that there is no sense fooling yourself about anything, and the best kind of positive attitude comes from a realistic place. That said, I no longer read CF blogs and search for new ones and topics I wonder about. I follow my select few friends blogs to support them, but I know whats going on with them anyways. I feel I have closed the door on my phase of exploration, for the best.
Everything has a reason I believe, and maybe theres something in the Lawrensons' next chapter that I should see.. because I am back reading and praying for them now.
Most recently (frankly, I have the memory of a goldfish and can probably only go back maybe a month at best) I turned 30 surrounded by a small group of family and friends at my parents house. I had wished for a backyard barbeque, but the weatherman let me down and we were rained into the house. Still, we had chicken and sweet potato fries, a gorgeous cake specially-designed with a few of my faves (colour, flower), a wonderfully touching suprise of a professional photo of the kids in my life, my nephews and neice, all together, and countless more spoils that I couldn't possibly deserve.
My husband had two weeks off this spring as well, which always intimidates me because it means for two weeks I have to go without my couch-naps (we live in a very small place with no doors... so its difficult to find quiet and space). Lucky for me, hubby loves golf and spent a good amount of time doing exactly that, but we still managed to do a few interesting things together like travel to the U.S and niagara falls, the drive-in movies, etc.
Transplant of course drifts in and out of my head, muted but there. Ive recently had a new symptom that has plagued me a week out of each of the last two months (love being a woman.. NOT) and if I see it one more time I'm going to have to get concerned that my lungs are crying out for a change..
The worst thing about CF is how different everyone is. How unpredictable the course of it is. It never becomes acceptable.
When I came to write this new blog post, I caught a glimpse of a blog I used to read called "CFhusband". Tricia Lawrensons amazing triumphs over low lung function pregnancy, high risk transplant, and cancer have been a source of strength for me. Today, however, I found her in yet another position of fragility facing heavy-duty organ rejection. It saddened me to say the least. One of the big issues especially with people like myself who struggle to make the leap to listing for transplant, is whether or not its wise to subject myself to negative stories and outcomes. I've always been of the mindset that there is no sense fooling yourself about anything, and the best kind of positive attitude comes from a realistic place. That said, I no longer read CF blogs and search for new ones and topics I wonder about. I follow my select few friends blogs to support them, but I know whats going on with them anyways. I feel I have closed the door on my phase of exploration, for the best.
Everything has a reason I believe, and maybe theres something in the Lawrensons' next chapter that I should see.. because I am back reading and praying for them now.
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