torsdag den 24. maj 2012
onsdag den 28. september 2011
onsdag den 3. august 2011
Piper's blog challenge, cf control and progression
I am writing this blog, in connection with fellow cf'er Piper's blog challenge :) http://amatteroflifeandbreath.blogspot.com/
Cf control and progression, hmmm a difficult subject. I don't feel like I have control over my cf, things will happen, as in life, and I cannot control that. But that said, I can control it in that way, that I stay compliant with my treatments, and I do. I am compliant. I do my treatments morning and nights, and physical thearaphy once on weekdays, and twice on weekends. I like to be in control of things, I don't like the uncertanty, I am the kind of person who likes to know what I am going to do tomorrow, change of plans makes me uneasy. I do feel that my cf in "under control", knowing that things can change any minute, I just don't want them to... One thing in my treatment routine that I feel guilty about, and feel like I should do more of, is the excercise part. I don't excercise as much as I should, I walk about 40 minutes a day, to and from work, and that is pretty much about it. And at a slow pace. My rehabalitation doctor is alway on my case about excercising, encouraging me to do more about it. And I would really like to, and each time when I leave the hospital after my 3 month check up, I intend to do more exercise, I plan walking eventually running. But after a few days my motivation drops, I am not a sporty person, never have been, well I use to like gymnastic in school and have played handball, but let's face it, I am person who likes to be comfortable and relaxed and sports doesn't fit into that description for me. But still I intend to go walking more, my next 3 month apointment is in about a month away, and I want to be able to look my doctor in the eye, and say, yes I have been excercising. Moreover, my ptfs have been 10 percent lower than normal the last couple of times I've been to the hospital, it might be becasue of small recurring infections, which have required oral antibiotics, or that I have gained some kilos (I am pancriatis sufficient-very sufficinent) so gaining weight has NEVER been a problem for me. I would like to lose some, and being a bit "round around the corners" might be contributing to the decrease in pft, I don't know, but I know I would feel better with a bit less weight, and excercising more.
I was diagnosed late, and have a "mild" case. At first I was very concerned about "progression". I was not sure how to interpret the word. Would I suddenly take a turn for the worse, out of the blue, because "now" I had cf? When/how was it going to happen? I am less worried about that now. I live a "normal" life. I sometimes forget my cf. I see myself as any other person, I was any other person for 32 years. Until my diagnosis. My treatments are just part of my routine, I put on makeup while doing treatments in the mornings, doesn't everyone do this? It feels normal for me. At 18:30 at night I inhale my symbicort and half an hour later I sit down on the sofa, put on the tv and watch a sitcom while doing treatments, doesn't everyone? It's just part of me. When I hear about people stuck in airports or spending the night at a friends place just out of the blue, I wonder, what about their medication, don't they need to do their treatments first? But no, they are not in that group. The cf group. They might be in another group... Back to progression. As things are right now, I don't think about it much, I have to say. I have been ok for the last year. I was admitted to hospital almost a year ago, and have my first pic line and round of IV. That was a moment of truth. I am like the "others", I too do need extra treatment. But right now, knock on wood, things are ok. I have been on oral antibiotic a lot in the last year, almost more on it thatn off it. I have mucus, often ugly green mucus, not much but enough to start a round of oral antibiotics. The summer is also ok this year in Spain, not too hot -one summer a few years back was very warm for me, and I was constantly short of breath and uncomfortable. My sinusus are also ok. I feel like I might have a pholypus (sp?) that needs attention. I get shots of pain from time to time. But for now, things are ok.
Things might change over the years, I expect they will, it would be strange not. But I feel/believe/hope that since I have a "mild" case, my symphoms will be milder, and I will be able to continue with my life. In the pure meaning of the word. I struggle with wether I am a "real" cf'er of just a person, who has a mild cf illnes. I don't know. There are things I can identify with in people who have more severe cases than mine, and thing I cannot. I have not been on oxygene for example, I don't know how that is. I cannot relate. But then there are things like talking about mucus with your family like it's the most natural things of all, comparing colours etc.
When it comes to taking care of yourself and wether you are doing "good" enough, I feel that as long as you do your treatments, exercise(hello Gunhild) and follow a healthy diet, then there is not really more you can do... I stay away from smoke all I can e.g. and I take things slow, when I stress out, busy day at work for example, I feel it in my body, and know I have to slow down. We cannot live our lives in a bubble either, would that be a life worth living? I don't know. Life is precious, we are dealt our hands in life, and we play them as good as we can.
Cf control and progression, hmmm a difficult subject. I don't feel like I have control over my cf, things will happen, as in life, and I cannot control that. But that said, I can control it in that way, that I stay compliant with my treatments, and I do. I am compliant. I do my treatments morning and nights, and physical thearaphy once on weekdays, and twice on weekends. I like to be in control of things, I don't like the uncertanty, I am the kind of person who likes to know what I am going to do tomorrow, change of plans makes me uneasy. I do feel that my cf in "under control", knowing that things can change any minute, I just don't want them to... One thing in my treatment routine that I feel guilty about, and feel like I should do more of, is the excercise part. I don't excercise as much as I should, I walk about 40 minutes a day, to and from work, and that is pretty much about it. And at a slow pace. My rehabalitation doctor is alway on my case about excercising, encouraging me to do more about it. And I would really like to, and each time when I leave the hospital after my 3 month check up, I intend to do more exercise, I plan walking eventually running. But after a few days my motivation drops, I am not a sporty person, never have been, well I use to like gymnastic in school and have played handball, but let's face it, I am person who likes to be comfortable and relaxed and sports doesn't fit into that description for me. But still I intend to go walking more, my next 3 month apointment is in about a month away, and I want to be able to look my doctor in the eye, and say, yes I have been excercising. Moreover, my ptfs have been 10 percent lower than normal the last couple of times I've been to the hospital, it might be becasue of small recurring infections, which have required oral antibiotics, or that I have gained some kilos (I am pancriatis sufficient-very sufficinent) so gaining weight has NEVER been a problem for me. I would like to lose some, and being a bit "round around the corners" might be contributing to the decrease in pft, I don't know, but I know I would feel better with a bit less weight, and excercising more.
I was diagnosed late, and have a "mild" case. At first I was very concerned about "progression". I was not sure how to interpret the word. Would I suddenly take a turn for the worse, out of the blue, because "now" I had cf? When/how was it going to happen? I am less worried about that now. I live a "normal" life. I sometimes forget my cf. I see myself as any other person, I was any other person for 32 years. Until my diagnosis. My treatments are just part of my routine, I put on makeup while doing treatments in the mornings, doesn't everyone do this? It feels normal for me. At 18:30 at night I inhale my symbicort and half an hour later I sit down on the sofa, put on the tv and watch a sitcom while doing treatments, doesn't everyone? It's just part of me. When I hear about people stuck in airports or spending the night at a friends place just out of the blue, I wonder, what about their medication, don't they need to do their treatments first? But no, they are not in that group. The cf group. They might be in another group... Back to progression. As things are right now, I don't think about it much, I have to say. I have been ok for the last year. I was admitted to hospital almost a year ago, and have my first pic line and round of IV. That was a moment of truth. I am like the "others", I too do need extra treatment. But right now, knock on wood, things are ok. I have been on oral antibiotic a lot in the last year, almost more on it thatn off it. I have mucus, often ugly green mucus, not much but enough to start a round of oral antibiotics. The summer is also ok this year in Spain, not too hot -one summer a few years back was very warm for me, and I was constantly short of breath and uncomfortable. My sinusus are also ok. I feel like I might have a pholypus (sp?) that needs attention. I get shots of pain from time to time. But for now, things are ok.
Things might change over the years, I expect they will, it would be strange not. But I feel/believe/hope that since I have a "mild" case, my symphoms will be milder, and I will be able to continue with my life. In the pure meaning of the word. I struggle with wether I am a "real" cf'er of just a person, who has a mild cf illnes. I don't know. There are things I can identify with in people who have more severe cases than mine, and thing I cannot. I have not been on oxygene for example, I don't know how that is. I cannot relate. But then there are things like talking about mucus with your family like it's the most natural things of all, comparing colours etc.
When it comes to taking care of yourself and wether you are doing "good" enough, I feel that as long as you do your treatments, exercise(hello Gunhild) and follow a healthy diet, then there is not really more you can do... I stay away from smoke all I can e.g. and I take things slow, when I stress out, busy day at work for example, I feel it in my body, and know I have to slow down. We cannot live our lives in a bubble either, would that be a life worth living? I don't know. Life is precious, we are dealt our hands in life, and we play them as good as we can.
torsdag den 9. juni 2011
The reason
So, the blog challenge, showed to be a bit too challenging for me, hmmm :o/ I normally love those kind of things. Well there have been a lot of things going on, so I haven't felt up to the challenge, so to speak. I am back to square one, is a phrase that can sum up my current situation. But after lot of thinking, I've found that it's not too bad and makes sense. Let me begin.
In Febuary I got a phone call from a recruitment agency, asking if I was interested in changing jobs, this job in question was only 10 min by bus from my home, so yes I was interested. Afterall I worked in a job far far away from home. I went to several interview, also had one through the phone, took tests and was finally given the job. As a customer service agent at HP. A lot of hurdles to get to such a simple position you might think, as do I... But I was happy, I had better working hours, better salary and was close to home. What could posibly go wrong?? Well, after one month of intense training, one month as a customer service agent, I was called to the supervisor's office at 4.30 pm, the Friday that marked my one month trial period, which they told me in one of the interview they didn't use, and asked to kindly pick up my things and leave. Well maybe not in those words, but that was the meaning. I was told that I hadn't asked my supervisor enough questions, and didn't seem involved and "hungry" enough. I was shocked, I certainly hadn't seen that coming. I has asked about the trial period, becasue of not wanting to leave the job far far away, that I had been in for 3 years and had a stable contract with. But off I had to go. Oh and I was asked to return my security badge, the badge I had waited one month and a half for,(I was excited about having a badge with my picture on it, haven't had that before). I picked up my things, two cute bunnies my mother had sent for easter, among other things, said goodbye teary eyed to my colleauges and a nice colleauge gave me a ride home. We talked a lot in the car, she was shocked too, we started at the same time, and she had been told the same about the trial period. We came to the conclusion, that they had found out that they were one customer service too many. One had to go, and the one was me.
I had a hard time finding a reason for this. For this thing happening to me. I mean I was so gratefull to finally have a job close to home, which I had been praying for, for a long time. It would mean I could rest more and not get so tired from the transport I was used to doing every day. I was home at 5.10 pm and was not tired. But it was not to be. Also it was hard due to the fact that L. had been out of work on and off for about 2 years. Big crisis in Spain. We were both unenployed, I could get unemployment money, but his was up. I was more optimistic thatn L. though, he took it very hard, and I had to be the strong one to support him. I am more comfortable in that role. It doesn't happen very often though. He says I'm stronger than him, maybe I am in that way, altough I have a lot of issues to deal with. But when it come to situations like that, I stand up to the challenge.
I spent a week looking for work, we both did, at first it was fun but spending much time together, you maybe start to rub eachother the wrong way. Was he looking on FB too much, didn't I take it seriously etc. I made an apointment to go the unemployment office, to ask for money. But for that I needed some papers. Amongst others, some that I had to get from my old company. So I wrote them and asked for the papers. The next day, I got a call from them, a guy calle C. saying what a shame and that they would send the papers and soon as possible. And if I was interested if they look for something for me there. I said yes I was interested. Later C. sent the papers but the papers needed a signature, so I wrote back and asked for it. When by the next day, the papers hadn't arrived I called again, and then C asked if I still was interested in working for them, I said yes of course, and then he asked if I could come tomorrow, I said ok sure, for an interview? No to start in my old position again. Ok? I was very surprised, just like that I had got my job back. C. referred my to the manager and we agreed I'd start the next day at 9. In my old seat, at my old desk, with my old colleagues, two months on.
I was of course happy to be employed again, I was one week without work. But I was still sad for L. who still hadn't found anything. Then about 2 weeks in, one of my colleagues found another work, and after a bit of thinking, I grabbed the chance and gave C. L's CV. A few days later C. called L. and L. was asked to come for an interview. And a few days later on, L. got the call that he got the job! We were so trilled. And now we work in the same company, we have the same supervisor, but do not work together (yet). So I'm back to square one, but I have L. with me, and he needed that, we both did. So I'm sticking to the thought, that the reason for this whole thing to happen, is that L. would get a job. And that is a super reason :o)
In Febuary I got a phone call from a recruitment agency, asking if I was interested in changing jobs, this job in question was only 10 min by bus from my home, so yes I was interested. Afterall I worked in a job far far away from home. I went to several interview, also had one through the phone, took tests and was finally given the job. As a customer service agent at HP. A lot of hurdles to get to such a simple position you might think, as do I... But I was happy, I had better working hours, better salary and was close to home. What could posibly go wrong?? Well, after one month of intense training, one month as a customer service agent, I was called to the supervisor's office at 4.30 pm, the Friday that marked my one month trial period, which they told me in one of the interview they didn't use, and asked to kindly pick up my things and leave. Well maybe not in those words, but that was the meaning. I was told that I hadn't asked my supervisor enough questions, and didn't seem involved and "hungry" enough. I was shocked, I certainly hadn't seen that coming. I has asked about the trial period, becasue of not wanting to leave the job far far away, that I had been in for 3 years and had a stable contract with. But off I had to go. Oh and I was asked to return my security badge, the badge I had waited one month and a half for,(I was excited about having a badge with my picture on it, haven't had that before). I picked up my things, two cute bunnies my mother had sent for easter, among other things, said goodbye teary eyed to my colleauges and a nice colleauge gave me a ride home. We talked a lot in the car, she was shocked too, we started at the same time, and she had been told the same about the trial period. We came to the conclusion, that they had found out that they were one customer service too many. One had to go, and the one was me.
I had a hard time finding a reason for this. For this thing happening to me. I mean I was so gratefull to finally have a job close to home, which I had been praying for, for a long time. It would mean I could rest more and not get so tired from the transport I was used to doing every day. I was home at 5.10 pm and was not tired. But it was not to be. Also it was hard due to the fact that L. had been out of work on and off for about 2 years. Big crisis in Spain. We were both unenployed, I could get unemployment money, but his was up. I was more optimistic thatn L. though, he took it very hard, and I had to be the strong one to support him. I am more comfortable in that role. It doesn't happen very often though. He says I'm stronger than him, maybe I am in that way, altough I have a lot of issues to deal with. But when it come to situations like that, I stand up to the challenge.
I spent a week looking for work, we both did, at first it was fun but spending much time together, you maybe start to rub eachother the wrong way. Was he looking on FB too much, didn't I take it seriously etc. I made an apointment to go the unemployment office, to ask for money. But for that I needed some papers. Amongst others, some that I had to get from my old company. So I wrote them and asked for the papers. The next day, I got a call from them, a guy calle C. saying what a shame and that they would send the papers and soon as possible. And if I was interested if they look for something for me there. I said yes I was interested. Later C. sent the papers but the papers needed a signature, so I wrote back and asked for it. When by the next day, the papers hadn't arrived I called again, and then C asked if I still was interested in working for them, I said yes of course, and then he asked if I could come tomorrow, I said ok sure, for an interview? No to start in my old position again. Ok? I was very surprised, just like that I had got my job back. C. referred my to the manager and we agreed I'd start the next day at 9. In my old seat, at my old desk, with my old colleagues, two months on.
I was of course happy to be employed again, I was one week without work. But I was still sad for L. who still hadn't found anything. Then about 2 weeks in, one of my colleagues found another work, and after a bit of thinking, I grabbed the chance and gave C. L's CV. A few days later C. called L. and L. was asked to come for an interview. And a few days later on, L. got the call that he got the job! We were so trilled. And now we work in the same company, we have the same supervisor, but do not work together (yet). So I'm back to square one, but I have L. with me, and he needed that, we both did. So I'm sticking to the thought, that the reason for this whole thing to happen, is that L. would get a job. And that is a super reason :o)
onsdag den 20. april 2011
A little funny story
One time when I was in the hospital for my 3 monthly check up, I met with a nutrition specialist, a doctor that I don't see normally.
In Spain it's normal to say 'guapa' to people, which means 'pretty'. And so when she met me she said something like: Pretty girl, young, thin. Then she asked how old I was, and I said 33, and she pulled a face like awh, and then we got to talk about weight, and she said at first that I didn't need to lose weight, and then she asked me to pull up my shirt, and then after a while, yes ok maybe some kilos... So I went from, pretty girl, young, thin, to pretty girl, not that young, could stand to lose a few pounds.
Hey, at least she didn't change her mind on the 'guapa'...
In Spain it's normal to say 'guapa' to people, which means 'pretty'. And so when she met me she said something like: Pretty girl, young, thin. Then she asked how old I was, and I said 33, and she pulled a face like awh, and then we got to talk about weight, and she said at first that I didn't need to lose weight, and then she asked me to pull up my shirt, and then after a while, yes ok maybe some kilos... So I went from, pretty girl, young, thin, to pretty girl, not that young, could stand to lose a few pounds.
Hey, at least she didn't change her mind on the 'guapa'...
torsdag den 14. april 2011
15 interesting fact about me
1. I am a bit dyslexic, I often forget to type the last letter of a word I am writing. And I definitly am number blind.
2. I can't swim, which might be a bit strange since I'm from a country made up of 18 small islands surrounded by water.
3. I have been the same height, since I was 16 years old. 1 meter 69.
4. I don't like meat that much. I would love to be able to eat bread, oven fried potatoes, fruit and chocolate every day.
5. The left side of my stomach is slightly bigger than the right side.
6. I am a Coca Cola Light addict.
7. My nails grown very fast.
8. I've never had a broken bone in my body.
9. I can't bake even though I follow the recipe to the letter.
10. I haven't been drunk since Sep. 2006
11. My favourite candy is Cadbury Milk Chocolate, I can eat a whole big bar in no time.
12. I want to visit Graceland. It's been my dream since I was a child and wanted to visit the grave of Elvis -before I knew of Graceland.
13. I like better to write than to read books, and I love to read books.
14. I would like to be able to wear more jewelry, especially bracelets, but they bother me, I have a bit of arthritis.
15. I spent most of my life without the scent of smell. Now I have it, I sometimes wish it would go away again: some things just smell too bad!
2. I can't swim, which might be a bit strange since I'm from a country made up of 18 small islands surrounded by water.
3. I have been the same height, since I was 16 years old. 1 meter 69.
4. I don't like meat that much. I would love to be able to eat bread, oven fried potatoes, fruit and chocolate every day.
5. The left side of my stomach is slightly bigger than the right side.
6. I am a Coca Cola Light addict.
7. My nails grown very fast.
8. I've never had a broken bone in my body.
9. I can't bake even though I follow the recipe to the letter.
10. I haven't been drunk since Sep. 2006
11. My favourite candy is Cadbury Milk Chocolate, I can eat a whole big bar in no time.
12. I want to visit Graceland. It's been my dream since I was a child and wanted to visit the grave of Elvis -before I knew of Graceland.
13. I like better to write than to read books, and I love to read books.
14. I would like to be able to wear more jewelry, especially bracelets, but they bother me, I have a bit of arthritis.
15. I spent most of my life without the scent of smell. Now I have it, I sometimes wish it would go away again: some things just smell too bad!
torsdag den 7. april 2011
Regarding blog challenge
I started the blog challenge on the other blog I have, which is in Faroese. I think I will translate what I've written so far, and post it here.
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