Guess who got admitted today?
Yep, and it sucks. Mainly because I feel excellent and the numbers just aren't showing it. I'm definetly still imagining leaving here with no change and a fortnight lost for nothing. I think the stars aligned though. ...
My friend is in here, and her boyfriend who I adore as well made me laugh and smile and brought me coffee. My friend C keeps rooting me on (via msn), convincing me that despite my "feeling good" I will leave improved and feeling even better. She makes me smile too. Her laugh is contagious and infectious. I'm blessed to be admitted at the same time as her.
I also got a bed right away. That meant no mulling about it at home, and no experiencing the "last" night with my hubby. I got a private room, and its NOT the room my dear friend K passed away in last November.. I had been thinking about how I didn't want to be in there... at least not yet...
So, here I am.. sad, bored, not looking forward to this first alone-sleep in a year.. but grateful that its ONLY a tune-up, grateful that I AM going home in 2 weeks, and that I feel so good, because really.. isnt that what matters in the end?
Oh, and I'm finding already that the drastic change in routine is making me see cuter and cuter sides to my man.. little bonuses like that might just make this okay
Tuesday, September 29, 2009
Thursday, September 24, 2009
Feeling free today
Today's been kinda brutal in some ways, but I feel great. Health is totally everything, but we all know that.
I solved a problem that should've been really really easy to pinpoint. My compressor sucks. TOBI has been taking an hour or so and I've been shutting it off early for weeks. Possibly the exact amount of weeks that I've been run down with lower lung function. I'm not one to cheat but after half an hour I do the mask jiggle to the light and its still completely full and I quit to go walk the dog with my hubby. So, long story short, I am now using my only-meant-for-travel Paritrek that is pretty brand spankin new. The difference blew me away. I swear I felt 5x better after just one mask. Now I have 4 days of quality meds to see what Tuesday's clinic will bring.
I have managed to start today off with only 4 hours of sleep (don't ask--but not health related at ALL), do the usual dog walk routine, come home and spend an hour trying to coach my dog out from under the back deck (he got stuck) and back inside to do a few chores and finally my daily online browse. I'm not really tired considering. Hooray for better-late-than-never discoveries. And for hyphens. Cause I'm using them alot. I get silly when I feel good. :D
I solved a problem that should've been really really easy to pinpoint. My compressor sucks. TOBI has been taking an hour or so and I've been shutting it off early for weeks. Possibly the exact amount of weeks that I've been run down with lower lung function. I'm not one to cheat but after half an hour I do the mask jiggle to the light and its still completely full and I quit to go walk the dog with my hubby. So, long story short, I am now using my only-meant-for-travel Paritrek that is pretty brand spankin new. The difference blew me away. I swear I felt 5x better after just one mask. Now I have 4 days of quality meds to see what Tuesday's clinic will bring.
I have managed to start today off with only 4 hours of sleep (don't ask--but not health related at ALL), do the usual dog walk routine, come home and spend an hour trying to coach my dog out from under the back deck (he got stuck) and back inside to do a few chores and finally my daily online browse. I'm not really tired considering. Hooray for better-late-than-never discoveries. And for hyphens. Cause I'm using them alot. I get silly when I feel good. :D
Wednesday, September 23, 2009
Does this happen to anyone else?
You know what drives me crazy? Feeling awful temporarily. It's 100x worse than feeling awful for a few days or a week because it messes with your brain.
I get this all the time. I'm scooting about my day and suddenly I feel incapacitated. I don't want to go out, eat, smile, talk, nothing. It can last anywhere from half an hour to 6 hours. When it goes away I actually forget to be grateful because I'm so stumped as to what to think or do.
Yesterday I was convinced that I finally had come to the end of the road of hope with these orals I'm on. I envisioned calling clinic, waving the white flag and kickstarting iv's a week early. I felt so bad that I could accept the idea for once. I sat at a family birthday reluctantly shovelling delicious roast beef into my mouth and not talking to anyone. I'd answer questions painfully and knew that my family probably just thought I was grumpy, not out of breath. When I do bother to explain it, I feel like a crazy person.
Then, after dinner, I dragged myself out for a walk with my dog, my sister, and her husband, hoping to meet my dogs little shih tzu buddy so that they could play (my dog is young and extremely energetic and needed this badly). At the park it was nothing but breathlessness and thoughts about giving up on the walk alltogether and getting home to lie down. Then, Bauer's buddy arrived and they played. I loved watching it, and suddenly I was great. From that point forward the chains around my chest loosened and I still feel fine today. Does this happen to anyone else? Argh. I'm more than willing to attribute lots of it to mood or whatnot, sure.. I love psychology.. but I can't believe its ALL psychosomatic...
I get this all the time. I'm scooting about my day and suddenly I feel incapacitated. I don't want to go out, eat, smile, talk, nothing. It can last anywhere from half an hour to 6 hours. When it goes away I actually forget to be grateful because I'm so stumped as to what to think or do.
Yesterday I was convinced that I finally had come to the end of the road of hope with these orals I'm on. I envisioned calling clinic, waving the white flag and kickstarting iv's a week early. I felt so bad that I could accept the idea for once. I sat at a family birthday reluctantly shovelling delicious roast beef into my mouth and not talking to anyone. I'd answer questions painfully and knew that my family probably just thought I was grumpy, not out of breath. When I do bother to explain it, I feel like a crazy person.
Then, after dinner, I dragged myself out for a walk with my dog, my sister, and her husband, hoping to meet my dogs little shih tzu buddy so that they could play (my dog is young and extremely energetic and needed this badly). At the park it was nothing but breathlessness and thoughts about giving up on the walk alltogether and getting home to lie down. Then, Bauer's buddy arrived and they played. I loved watching it, and suddenly I was great. From that point forward the chains around my chest loosened and I still feel fine today. Does this happen to anyone else? Argh. I'm more than willing to attribute lots of it to mood or whatnot, sure.. I love psychology.. but I can't believe its ALL psychosomatic...
Tuesday, September 15, 2009
Delay
I thought I should write a short post to follow up my mention of clinic yesterday. Nothing changed, but I'm satisfied. I got the main doc, the best in my opinion, at my clinic and she knew exactly what to do with me. I got the authority I wanted.
Basically, I'm getting yet another 2 weeks of orals (honestly probably just to give me time to mentally prepare) and then if nothing changes AGAIN, I'm getting IV's 100%. I told her my fears of a resultless admission and she told me to stop worrying 5 steps ahead and focus on maybe 1 step ahead. Clearly I know my issues so I'm going to take this opportunity to partake in a 2 week exercise bonanza. Hey, if it works, I pretty much have to credit it and maybe it will be the push I need to get aggressive with that area of my life. I've also began asking various family members to include me in exercise activities whenever they think to.. its not easy asking for help but I know having a partner will be a huge inspiration.
I apologize for the sloppy writing style the last few posts. I've been more on quantity than quality lately. Here's to doing what is necessary in the moment and not wasting precious moments on worrying!
Basically, I'm getting yet another 2 weeks of orals (honestly probably just to give me time to mentally prepare) and then if nothing changes AGAIN, I'm getting IV's 100%. I told her my fears of a resultless admission and she told me to stop worrying 5 steps ahead and focus on maybe 1 step ahead. Clearly I know my issues so I'm going to take this opportunity to partake in a 2 week exercise bonanza. Hey, if it works, I pretty much have to credit it and maybe it will be the push I need to get aggressive with that area of my life. I've also began asking various family members to include me in exercise activities whenever they think to.. its not easy asking for help but I know having a partner will be a huge inspiration.
I apologize for the sloppy writing style the last few posts. I've been more on quantity than quality lately. Here's to doing what is necessary in the moment and not wasting precious moments on worrying!
Monday, September 14, 2009
Back to Germs
Tomorrow is clinic day again. My nerves will be sky-high in about 14 hours. Lucky for me, I timed everything so well with back to school season, and the cold and flu bugs that come with it.
My new oral drug did wonders again (just like the last one did right before it faltered randomly at the end of the 2 weeks), but I was fortunate to catch a bug from a child a day before he experienced any symptoms. BOOM: sore throat 4 days before clinic. I actually feel alright though now (short of a throaty voice), so here's hoping.
Then, I go to the store tonight to pick up a handful of necessities, and both my cashier and her adjacent friend are outwardly sick. Mine actually sneezed as I arrived and proceeded to comment about it. It got me thinking about how I approach life and how I'm expected to by friends, family and doctors.
Ever since I've been out of work, my family and friends have been developing an opinion that I spend too much time thinking about CF. I read blogs, talk to my "CF friends", talk about them and who does well when and how. I get it. Focusing on CF can bring you down, in the sense that statistically, outcomes are negative, which doesn't inspire hope. Lack of hope inspires inaction and depression. Also, when it takes over ones life to such a degree, its hard to make conversation in the real world. I've experienced all of this.
The problem is, my life before fall 2007/winter 2008 was the complete and utter opposite. I compeletly did not see the impact of each one of my actions (or inactions) when it came to CF. I did my meds like a champ, but physio and exercise were a non-existent world. I never thought about it because it never stopped me. I walked where I wanted to without problems and lived my life. I watched my numbers go down and only got irritated when the doc's warned me about it. I guess I thought there was no bottom floor to what my lung numbers could be. I feel like the way I am now reminds me that other people do what I do, and that I need to do it for a REAL reason.. to put off transplant, and thats why I feel its not wrong.
Its such a fine balance, and that's my point. How is it that I can manage "pretending" to be into trivial things and feel free and then go to the grocery store and be scared for my life when my cashier has a cold. How can I enjoy my marriage when I start thinking about how great it would be if we could start a family before we're 30 and then remember what that will take.. CF is so so present everywhere it seems. I'm NOT ok with dying young. I'm barely ok with transplant. I'm stuck in regret about my thoughtless CF past. The attitude of 'this is the only body/life we have, so enjoy it' is hard to swallow at 27. Maybe its how I was brought up that makes me still feel like I'm owed the mindset of being a normal healthy human being, who "coughs occasionally and does meds". Whatever it is, its immobilizing me for the moment. I want my ignorant hopes back.
My new oral drug did wonders again (just like the last one did right before it faltered randomly at the end of the 2 weeks), but I was fortunate to catch a bug from a child a day before he experienced any symptoms. BOOM: sore throat 4 days before clinic. I actually feel alright though now (short of a throaty voice), so here's hoping.
Then, I go to the store tonight to pick up a handful of necessities, and both my cashier and her adjacent friend are outwardly sick. Mine actually sneezed as I arrived and proceeded to comment about it. It got me thinking about how I approach life and how I'm expected to by friends, family and doctors.
Ever since I've been out of work, my family and friends have been developing an opinion that I spend too much time thinking about CF. I read blogs, talk to my "CF friends", talk about them and who does well when and how. I get it. Focusing on CF can bring you down, in the sense that statistically, outcomes are negative, which doesn't inspire hope. Lack of hope inspires inaction and depression. Also, when it takes over ones life to such a degree, its hard to make conversation in the real world. I've experienced all of this.
The problem is, my life before fall 2007/winter 2008 was the complete and utter opposite. I compeletly did not see the impact of each one of my actions (or inactions) when it came to CF. I did my meds like a champ, but physio and exercise were a non-existent world. I never thought about it because it never stopped me. I walked where I wanted to without problems and lived my life. I watched my numbers go down and only got irritated when the doc's warned me about it. I guess I thought there was no bottom floor to what my lung numbers could be. I feel like the way I am now reminds me that other people do what I do, and that I need to do it for a REAL reason.. to put off transplant, and thats why I feel its not wrong.
Its such a fine balance, and that's my point. How is it that I can manage "pretending" to be into trivial things and feel free and then go to the grocery store and be scared for my life when my cashier has a cold. How can I enjoy my marriage when I start thinking about how great it would be if we could start a family before we're 30 and then remember what that will take.. CF is so so present everywhere it seems. I'm NOT ok with dying young. I'm barely ok with transplant. I'm stuck in regret about my thoughtless CF past. The attitude of 'this is the only body/life we have, so enjoy it' is hard to swallow at 27. Maybe its how I was brought up that makes me still feel like I'm owed the mindset of being a normal healthy human being, who "coughs occasionally and does meds". Whatever it is, its immobilizing me for the moment. I want my ignorant hopes back.
Friday, September 11, 2009
September 11th
So its been about a week since I posted, which feels like the line between 'haven't posted in awhile' and 'satisfied that there's been a recent post', am i right?
I think I've gotten over my pity party about my health, although I go back to clinic next week to do it all over again. It's a constant learning process and I'm trying to be a better student.
Today seems like an important day on so many levels. My first cousin is having her first baby as I speak, the first child in my family since my now-21-year-old cousin was born. It's pretty cool. I love babies. I just wish this one wasn't so far away from where I am. Congratulations to the new little family.
A friend of mine has been fighting his way through a double(triple if lungs count as two) organ transplant recovery.. he's had a rough go of it and is fighting to wake up and enjoy his new gift. Thinking about you and your family, L!
Of course today marks 8 years since the attacks in the U.S., the biggest disaster of my generation perhaps. I remember exactly where I was; 19 years old and at my brand new university grabbing some food in between classes at the cafeteria. I noticed alot of extra attention on the cafeteria television and couldnt believe what I saw. My next class, my favourite psych class, involved the prof (also my fave spanning all 4 years) telling us that there would be no class unless we wanted to sit and talk about how we felt about the attacks. The fact that class got cancelled really made it feel all the more important and also said something about that particular professor. I'm pretty sure I had more classes later that day that were not cancelled.
Those are my thoughts for the day!
I think I've gotten over my pity party about my health, although I go back to clinic next week to do it all over again. It's a constant learning process and I'm trying to be a better student.
Today seems like an important day on so many levels. My first cousin is having her first baby as I speak, the first child in my family since my now-21-year-old cousin was born. It's pretty cool. I love babies. I just wish this one wasn't so far away from where I am. Congratulations to the new little family.
A friend of mine has been fighting his way through a double(triple if lungs count as two) organ transplant recovery.. he's had a rough go of it and is fighting to wake up and enjoy his new gift. Thinking about you and your family, L!
Of course today marks 8 years since the attacks in the U.S., the biggest disaster of my generation perhaps. I remember exactly where I was; 19 years old and at my brand new university grabbing some food in between classes at the cafeteria. I noticed alot of extra attention on the cafeteria television and couldnt believe what I saw. My next class, my favourite psych class, involved the prof (also my fave spanning all 4 years) telling us that there would be no class unless we wanted to sit and talk about how we felt about the attacks. The fact that class got cancelled really made it feel all the more important and also said something about that particular professor. I'm pretty sure I had more classes later that day that were not cancelled.
Those are my thoughts for the day!
Wednesday, September 2, 2009
No Growth for the Weak
So its been a long time since a hospitalization has even been considered for me.
My last one was such an oddly good time, I thought I would be changed forever. Never again would I cry or fuss about having to go in for two weeks or more even. I'm an adult after all.
WRONG. I finally got close enough to taste it and I panicked. Practically begged the doc for orals, cried and got angry, etc etc. Sure, a lot has gone on in our hospital this year. I lost 2 friends mysteriously to cepacia about a year ago after both being admitted at the same time. 3 more also contracted it at the same time (not friends, but 5 at once, really?) and to my best knowledge, died as well. I've got the added burden of leaving my new husband for the first time and being alone there. And then there's the fear.
I spend so much of my days reading the blogs of fellow Cf'ers, following them on facebook, chatting with them through every means. Craving learning. Craving a comfort-level with the "inevitable". I wanna be ready for transplant when it comes, because I know it comes fast. I hear you can't be ready. I hear when you're sick enough to need it, it transforms from scary to exciting. Problem is, I'm still stuck back at the other babysteps. I've never had a picc line, haven't experienced NG tubes, ABG's, Ports, etc. I feel too new at this, but I know CF doesn't care how ready I am.
So it comes down to this, I've gotta get admitted when I can't dig myself out of whatever is causing my lower-than-baseline lung function, and I've gotta be strong. I just wish I was fighting for something better than scraping along the cusp of transplant. It's so unrewarding. Up and down ever so slightly, but with the difference meaning the world to my functionality. It feels desperate and messy, and I don't have the extra lung space to make mistakes with my treatment.
I also feel more than ever like theres no clear "right" thing to do. My white cell count is fine, my oxygen status great (for me), and yet my symptoms and pfts say otherwise right now. The docs seem to take my lead 99% of the way. I fully knew at clinic that depending on how I said my piece, I would either be put in, or given orals, without having to use either of those words. I hate that. I hate being in control when it comes to my survival. I want them to know exactly what I need and to give it to me and guarantee success. Being childish gets me nowhere, but here I am.
Finally, when I am scared, and not willing to "try" an admission right now for fear of the million things above, not to mention the possibility that it DOESNT work... I strain my family. My husband and Mom sat at clinic emotionally torn watching me act childish about something so many Cf'ers can just suck it up and do. A fellow blogger's post reminded me this week how our support systems (especially spouses) CHOSE to deal with CF and what it does to their loved ones. Not only could they lose us, but they watch us suffer physically and emotionally and yet are still there/here. That must take so much more courage than just doing what is needed to survive.
I have alot of growing up to do.
My last one was such an oddly good time, I thought I would be changed forever. Never again would I cry or fuss about having to go in for two weeks or more even. I'm an adult after all.
WRONG. I finally got close enough to taste it and I panicked. Practically begged the doc for orals, cried and got angry, etc etc. Sure, a lot has gone on in our hospital this year. I lost 2 friends mysteriously to cepacia about a year ago after both being admitted at the same time. 3 more also contracted it at the same time (not friends, but 5 at once, really?) and to my best knowledge, died as well. I've got the added burden of leaving my new husband for the first time and being alone there. And then there's the fear.
I spend so much of my days reading the blogs of fellow Cf'ers, following them on facebook, chatting with them through every means. Craving learning. Craving a comfort-level with the "inevitable". I wanna be ready for transplant when it comes, because I know it comes fast. I hear you can't be ready. I hear when you're sick enough to need it, it transforms from scary to exciting. Problem is, I'm still stuck back at the other babysteps. I've never had a picc line, haven't experienced NG tubes, ABG's, Ports, etc. I feel too new at this, but I know CF doesn't care how ready I am.
So it comes down to this, I've gotta get admitted when I can't dig myself out of whatever is causing my lower-than-baseline lung function, and I've gotta be strong. I just wish I was fighting for something better than scraping along the cusp of transplant. It's so unrewarding. Up and down ever so slightly, but with the difference meaning the world to my functionality. It feels desperate and messy, and I don't have the extra lung space to make mistakes with my treatment.
I also feel more than ever like theres no clear "right" thing to do. My white cell count is fine, my oxygen status great (for me), and yet my symptoms and pfts say otherwise right now. The docs seem to take my lead 99% of the way. I fully knew at clinic that depending on how I said my piece, I would either be put in, or given orals, without having to use either of those words. I hate that. I hate being in control when it comes to my survival. I want them to know exactly what I need and to give it to me and guarantee success. Being childish gets me nowhere, but here I am.
Finally, when I am scared, and not willing to "try" an admission right now for fear of the million things above, not to mention the possibility that it DOESNT work... I strain my family. My husband and Mom sat at clinic emotionally torn watching me act childish about something so many Cf'ers can just suck it up and do. A fellow blogger's post reminded me this week how our support systems (especially spouses) CHOSE to deal with CF and what it does to their loved ones. Not only could they lose us, but they watch us suffer physically and emotionally and yet are still there/here. That must take so much more courage than just doing what is needed to survive.
I have alot of growing up to do.
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