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This was a "normal" morning in that it had most of the breathing problems my worsening asthma brings with it now as the cancer medicines also kill important cells in the breathing system, and dry out all mucosa in mouth, nose and lower breathing system... this was an abnormal morning in that I had no fibro pains - it seems cancer medication kills them too LOL...
I woke up at 7 and realized that my mouth, nose and everything in the breathing system was horribly, painfully dry and that I was only barely able to breathe, just a little... I jumped up, and sitting on the bed inhaled the assthma attack medicine and then started to wait... after 15 minutes, it finally started to help and I felt the bronchus open a bit so I could breathe better. Meanwhile, I used sprays (2 different kind) to treat the painfully dry and stuck nose. It just absorbes everything, the dryness is so difficult. I inhaled the main asthma medicine after that, and the additional one after that, and continues to drink water... next, two different eye drops, one after another, as soon as I felt comfortable to be in a lying position again... because cancer meds also make eyes dry, like paper... by that, it was 7:40 a.m. already. I went to my daughter's room to measure her blood glucose and give her the insulin... then to the bathroom to brush my teeth which feel like sticky even though I brush them thoroughly; the mouth hygienist said it is because of the dryness. Then to use some tablets which could help in mouth dryness... and again himiditating nose, applying lip balm to dry lips (maybe the third time this morning already).... and when I finally felt that I could risk going out to the staircase where we have no heating, I still checked first from my Android how cold it is out-doors - wow, -11 C ONLY.... took a woollen jacket on me and went downstairs to make tea.
What could I eat for breakfast? What would hurt less when swallowed and going down to stomach because I have had pains when eating? Also the mucosa in esophagus is damaged and I get a painful, burning feeling when food goes down... I took Christmas loaf, liver paste, yoghurt (mild sort) and tea, and hoped for the best. I also doubled the stomach protecting medicine I am taking for these problems. To my surprise I could finally eat all I had taken and even have all my medicine, including cortizone for asthma and another additional asthma medicine, at least the cortizone for sure irritating the stomach too.
When I was ready, it was past 10 a.m. It had taken me more than three hours to accomplish all this, and I had not showered yet, I had not dressed up yet, I had not done anyhting extra like read the morning paper or something like that. All that had kept occupying me till that was cancer and its treatments, and especially the side effects I have chosen to live with, and asthma.
If I had had my usual dizziness, clumsiness, stiffness and pains which come with fibromyalgia and which I don't have now, it would have taken me even more time to accomplish all this.
No doctor has ever talked to me about retiring. I still have 11 years to the official retirement. (Fibromyalgia is not accepted as a reason fore retiring in Finland, and till now, asthma has behaved, sort of...)
Showing posts with label asthma. Show all posts
Showing posts with label asthma. Show all posts
Sunday, December 26, 2010
Monday, November 15, 2010
Trying to control feelings
I had a really good discussion in chat with darling Mo Yee. She asked how I am and although I was having lunch and got that in my cell phone instead of laptop, I replied to her... sharing 28 years old memories from her visit in Finland has been really therapeutic and has felt so good that I have sometimes had tears in my eyes, looking at all those photos... it is such a happy feeling!
I said I was somehow messed up with feelings and completely lost, unaware of what I should do. It was not that feelings would come and go and be out of my control. It was that I was desperately trying to control all negative feelings from taking over, and I felt I was losing the battle, and I was getting desperate. I was about doing things that I knew I did not want to do, that felt really difficult and that would only have been repeating old mistakes and creating misrability.
It was lucky that she came around and started asking questions. When I started putting that mess that was in my heart and head into words, I started to realize what it was about. Being in a nonverbal state, it was impossible to even understand - not to talk about analyzing and finding solutions.
Mo Yee said my medication probably affects my mood too. I am sure it does. I am going through something that I have never gone through and that is considered a very hard treatment (the cytpstates). It is killing cancer cells, if there are any, but also other cells in me, cells that my body needs. And my body has to adjust to that and recover from that - over and over again.
Then she asked if I get enough rest. Well I most certainly don't get even near enough, if not 2 hours sleep at night is considered as such. I am exhausted to such limits that I don't know what will happen. I don't even know any reason for staying awake, I just do. Sometimes I have pains, sometimes (often!) it is asthma that is keeping me awake, sometimes, like last night, nothing - I suppose I was awake because I was too exhausted to sleep.
Then we talked about the necessity to listen to our bodies and act accordingly. I am exhausted so the absolutely most important thing in my life is to rest. I am ill (caught a cold which made asthma worse which caused me to start another course of cortizone which is such a good medicine but I hate it because of what it does to me...) so I have to focus on getting well and forget about excercise.
I was afraid I'd do uncontrolled things because of all feelings that were going round in me and that did not have a proper name or cause... I was looking at completely wrong direction, not noticing that the cause to those feelings of frustration, anger, agony, uncertainty, helplessness... was what was going on in me, my body, and what was actually quite enough to cause all those feelings... and nothing that was going on around me. Nobody had caused it, not even myself - I am seriously ill and it puts me to situations that I cannot handle. Mo Yee reminded me to pray before I react to things that arise negative feelings. I did that right away and felt the difference. Instead of feeling misused and neglected and angry and whatever - I felt calm, positive, understanding, goodwilling - it is really a miracle what prayer can do. It is amazing that i DO KNOW ALL THAT - I just had gone so lost that I had FORGOT THE BASICS: prayer, rest, listening to myself and acting accordingly. And that medication can cause terrible things.
There will be yet another challenge. I will have the ct scan of the upper belly on Friday because the doctors think there is a possibility that cancer has spread to liver. I know my life is not in my own hands, it is not in the doctors' hands - I know I need not worry - and I cannot help worrying and being afraid anyway.
I know it is important to stay positive. I just don't know if anybody who has not had cancer her/himself knows how hard it is sometimes. I have been to the point where it has started to feel wishful thiking, and I have come back from there. I feel it really weary to struggle in three weeks' periods - cyto meds infusion, then three weeks pause, then lab tests, and if body has recovered, another cyto med infusion... when I think of that, it brings tears in my eyes. It feels really really awful mentally, not to talk about that it feels awful also physically. Just when I feel that I have got on my feet, there will be another infusion and I will have to start from bottom again. I cannot even explain how it feels.
But there are so many positive things too. I have awesome friends, I didn't even know how awesome before I got cancer. I could go in detail but I know many of them are really modest too and don't want to be praised publicly. I just want to know that I SEEEE every single thing that you do for me, and that they mean so much more than you can ever think about. I love you all from the bottom of my heart. I feel I don't deserve all this - this goodness - but you keep telling me that of course I do. And if I get in real trouble like today - God will send someone of you to say the right things, to ask the right questions, if I cannot do that myself. I feel like carried by so many hands, by so many prayers from all over the world that I am really privileged. It seems incredible that complete strangers are praying for me.But for some reason - and I think the reason are my friends - they are. I am overly grateful foir everything.
But easy this is not. It is everything else. I am so good in being ill, I have lots of experience - but nothing that would have helped me go through this. To this, my experience is not enough. But I am learning. ;)
I said I was somehow messed up with feelings and completely lost, unaware of what I should do. It was not that feelings would come and go and be out of my control. It was that I was desperately trying to control all negative feelings from taking over, and I felt I was losing the battle, and I was getting desperate. I was about doing things that I knew I did not want to do, that felt really difficult and that would only have been repeating old mistakes and creating misrability.
It was lucky that she came around and started asking questions. When I started putting that mess that was in my heart and head into words, I started to realize what it was about. Being in a nonverbal state, it was impossible to even understand - not to talk about analyzing and finding solutions.
Mo Yee said my medication probably affects my mood too. I am sure it does. I am going through something that I have never gone through and that is considered a very hard treatment (the cytpstates). It is killing cancer cells, if there are any, but also other cells in me, cells that my body needs. And my body has to adjust to that and recover from that - over and over again.
Then she asked if I get enough rest. Well I most certainly don't get even near enough, if not 2 hours sleep at night is considered as such. I am exhausted to such limits that I don't know what will happen. I don't even know any reason for staying awake, I just do. Sometimes I have pains, sometimes (often!) it is asthma that is keeping me awake, sometimes, like last night, nothing - I suppose I was awake because I was too exhausted to sleep.
Then we talked about the necessity to listen to our bodies and act accordingly. I am exhausted so the absolutely most important thing in my life is to rest. I am ill (caught a cold which made asthma worse which caused me to start another course of cortizone which is such a good medicine but I hate it because of what it does to me...) so I have to focus on getting well and forget about excercise.
I was afraid I'd do uncontrolled things because of all feelings that were going round in me and that did not have a proper name or cause... I was looking at completely wrong direction, not noticing that the cause to those feelings of frustration, anger, agony, uncertainty, helplessness... was what was going on in me, my body, and what was actually quite enough to cause all those feelings... and nothing that was going on around me. Nobody had caused it, not even myself - I am seriously ill and it puts me to situations that I cannot handle. Mo Yee reminded me to pray before I react to things that arise negative feelings. I did that right away and felt the difference. Instead of feeling misused and neglected and angry and whatever - I felt calm, positive, understanding, goodwilling - it is really a miracle what prayer can do. It is amazing that i DO KNOW ALL THAT - I just had gone so lost that I had FORGOT THE BASICS: prayer, rest, listening to myself and acting accordingly. And that medication can cause terrible things.
There will be yet another challenge. I will have the ct scan of the upper belly on Friday because the doctors think there is a possibility that cancer has spread to liver. I know my life is not in my own hands, it is not in the doctors' hands - I know I need not worry - and I cannot help worrying and being afraid anyway.
I know it is important to stay positive. I just don't know if anybody who has not had cancer her/himself knows how hard it is sometimes. I have been to the point where it has started to feel wishful thiking, and I have come back from there. I feel it really weary to struggle in three weeks' periods - cyto meds infusion, then three weeks pause, then lab tests, and if body has recovered, another cyto med infusion... when I think of that, it brings tears in my eyes. It feels really really awful mentally, not to talk about that it feels awful also physically. Just when I feel that I have got on my feet, there will be another infusion and I will have to start from bottom again. I cannot even explain how it feels.
But there are so many positive things too. I have awesome friends, I didn't even know how awesome before I got cancer. I could go in detail but I know many of them are really modest too and don't want to be praised publicly. I just want to know that I SEEEE every single thing that you do for me, and that they mean so much more than you can ever think about. I love you all from the bottom of my heart. I feel I don't deserve all this - this goodness - but you keep telling me that of course I do. And if I get in real trouble like today - God will send someone of you to say the right things, to ask the right questions, if I cannot do that myself. I feel like carried by so many hands, by so many prayers from all over the world that I am really privileged. It seems incredible that complete strangers are praying for me.But for some reason - and I think the reason are my friends - they are. I am overly grateful foir everything.
But easy this is not. It is everything else. I am so good in being ill, I have lots of experience - but nothing that would have helped me go through this. To this, my experience is not enough. But I am learning. ;)
Thursday, November 11, 2010
Asthma gets nasty
I have suffered the one-week-long post-treatment blues with sick feeling, head ache, odd feelings here and there, digestive discomforts and so on. Today I felt well and thought it would be a perfect day for a walk since I have developed an obsession for fresh air although I am not very skilled or in a very good condition.
SO I went out. It has started to snow, and after ca 50 meters I started to feel really odd in my head. It was something that made me think that I will fall unconscious pretty soon. But I didn't turn back, I went on. In the next street corner I was coughing my lungs out. I had to stop to cough, and stop again, and again, and nothing helped. I realized my asthma medicin was at home and not with me. But I did not turn back, I just went on walking. In the next corner, I decided to turn back, and I was considering calling my husband so that he'd come and drive me home. It just felt too ridiculous since I was not even far away from home - just that getting back there felt impossible. My breathing was really weary and it made noise not only by outhaling but by inhaling too. I don't know how I made it back home and up the stairs but I did, and I managed even to inhale the asthma medication and after a while, go and drive my little daughter home from school. Then I thought I'd go out again, since I had only walked for 10 minutes and I felt really ashamed of it, I would like to do better... but on second thoughts, my legs were almost unable to move for having done that walking with practically very little oxygen, I was trembling all over and feeling very weak and my heart was still beating extra - so that unfortunately, it is just to rest tonight.
That is the balancing I do all the time. It is essential to get as much motion as possible to beat breast cancer and prevent it from coming anew. Sometimes asthma gets so weary that motioning is impossible. And sometimes fibromyalgia adds on problems - like I think it did today, by making asthma worse than it was actually, and making walking cause more pain and fatique than would be reasonable.
But I have feelings too. I want to get well and it feels really hard to accept that my body is fighting against me. Or maybe it is telling me things I don't want to listen? Like, that I need to rest? After all, I DID some cleaning all through the morning, till noon. That counts too.
SO I went out. It has started to snow, and after ca 50 meters I started to feel really odd in my head. It was something that made me think that I will fall unconscious pretty soon. But I didn't turn back, I went on. In the next street corner I was coughing my lungs out. I had to stop to cough, and stop again, and again, and nothing helped. I realized my asthma medicin was at home and not with me. But I did not turn back, I just went on walking. In the next corner, I decided to turn back, and I was considering calling my husband so that he'd come and drive me home. It just felt too ridiculous since I was not even far away from home - just that getting back there felt impossible. My breathing was really weary and it made noise not only by outhaling but by inhaling too. I don't know how I made it back home and up the stairs but I did, and I managed even to inhale the asthma medication and after a while, go and drive my little daughter home from school. Then I thought I'd go out again, since I had only walked for 10 minutes and I felt really ashamed of it, I would like to do better... but on second thoughts, my legs were almost unable to move for having done that walking with practically very little oxygen, I was trembling all over and feeling very weak and my heart was still beating extra - so that unfortunately, it is just to rest tonight.
That is the balancing I do all the time. It is essential to get as much motion as possible to beat breast cancer and prevent it from coming anew. Sometimes asthma gets so weary that motioning is impossible. And sometimes fibromyalgia adds on problems - like I think it did today, by making asthma worse than it was actually, and making walking cause more pain and fatique than would be reasonable.
But I have feelings too. I want to get well and it feels really hard to accept that my body is fighting against me. Or maybe it is telling me things I don't want to listen? Like, that I need to rest? After all, I DID some cleaning all through the morning, till noon. That counts too.
Saturday, October 9, 2010
Doctor consultation
I realized that it has gone 6 weeks from the surgery and it means that I may go swimming again - my daughter will be delighted because meanwhile, she has not had anyone to go to the swimming hall with. Her big sister has not been interested, and because she has diabetes, I ahve not let her go with her best friend because she has some sort of problem with lack of concentration - and if someone goes swimming she needs to keep a bit focused on how our daughter is - in case her blood sugar would sink too low and she would not realize it by herself. Usually she does but in the water not always, perhaps because of the difference of the element - it burns more sugar than normal motioning.
I was surprised on how exhausted the doctor consultation made me. Since I got ill I have not been driving such distances myself very often - the central hospital is 100 km from us. I drove to the podiatrician once and she was astonished that I did - "Wow, now I can tell everyone that I have a client who comes from 100 kms distance!" LOL - and I was to the lung policlinic, and I was alone when I first went to see the surgeon and all the other specialists before the surgery but otherwise, my wonderful husband has been driving me and coming with me and he has taken care of all the practical things... and now it was about the treatments and it is never easy - and I have a lot to be considered over an average patient due to all the other conditions that I have.
I use to prepare writing down everything I want to ask the doctor about, and everything Rikard says that he wants to know too. Here the doctors are really informative, they take time to explain things and they answer questions and explain again if one does not understand it at once. I had been studying material delivered by the cancer organization and I had been reading a few books on the subject so I knew a great deal already before - but I did not know anything about the drugs. People are most concerned about the side effects and there is plenty of material about it but not so much about the drugs themselves. Rikard found a two-year-old article from a scientific publication that listed all the drugs used and all the drugs being tested - and I had copied that one and put it in my notebook to see at one glance what the doctor was talking about. (This is just to explain how excited I was, or nervous, or whatever the word - means that I was concentrating enormously). My tumor was hormone negative, fast-growing and fast-spreading one. Not to be treated with hormones, that is. Hormones would not be effective. (A pity on one hand but on the other hand I am happy - I like to remain in my own hormones unaltered, so that they may live their own life as normally as possible). I was hoping it would turn out to be HER2-protein-positive but it turned to be immune to that protein too (no receptors found) so this precise medication cannot be used either. Then the doctor had considered that it would be a two-phase treatment: first, three doses of TAXOTERE and then three doses of CEF which contains three different medications. Neither of these were on my list and I have not yet had time to find out anything about them so I cannot tell much more. I was given a patient guide to those who receiving adjuvant treatments to breast cancer, and I was taken to see the day department where the treatment is given. It looked very cosy, only a few patients at a time and each having their own nurse, doctor available all the time - felt very safe and well organized.
But it turned out there was a problem. TAXOTERE would cause problems in breathing which is not a succeeded combination with asthma, and therefore the doctors will negotiate about its safety together and make up their minds first after consulting other specialists. Again, it would be a pity to lose the most efficient drug since the tumor is already of a difficult type to be treated. On the other hand, it would also be a pity to suffocate already from the first dose (I think this is starting to be some sort of a cancer patient joking). Additionally, something in TAXOTERE also makes it that it causes extreme foot pain - and the doctor got dubious about that too because I have fibromyalgia. - If it will not be TAXOTERE the first three times, then it will be CEF all the six times; not as effective but the next-best solution. After all, nothing our Heavenly Father would not be able to solve!
I have a lot to learn about this - that I cannot know things so much on beforehand. That I have to live one moment at a time. That I have to be prepared to leave from this earth practically any minute. Anything can go wrong, as I have learned from the drugs. - I have been driving the car for so long that leaving this earth all in a sudden is not quite a strange thought to me, it has never been. ANything can happen in the traffic. any time. Still, now it is present in another way which feels a bit more close and concrete. It is not a bad feeling, just that I am trained in planning things ahead and this kind of adjusting is strange to me. As well as focusing on myself too. Suddenly it is my schedule that goes over everything else - holidays, celebrations, everything. Suddenly it is my disease that dictates the family's plans, my employer's doings, I don't even know what everything. I am not used in it. I guess no mother or amployee is.
So - the cytostates will be given in six different doses, over about 6 months' time. After that, three or four weeks again for the body to recover, and then the radial therapy for 5 - 6 weeks. And so far, I will be on sick leave at least till the beginning of December, most likely longer. My hemoglobine has been sinking again so when it is already low to begin with, I will probably be too tired to go to work anyway.
The first treatment will be on Friday next week - the 15th, which is, funny enough, the "Wear Pink" Day as this month is Breast Cancer Awareness Month. Funny - I think I will be wearing pink that day, having at least the colour to cheer me up if it gets too tough otherwise. I don't have to drive myself, I will be paid a taxi by the social security - the doctor will write a certificate for me for that. That is such luxury! And something I am not used to, either.
Life goes on.
I was surprised on how exhausted the doctor consultation made me. Since I got ill I have not been driving such distances myself very often - the central hospital is 100 km from us. I drove to the podiatrician once and she was astonished that I did - "Wow, now I can tell everyone that I have a client who comes from 100 kms distance!" LOL - and I was to the lung policlinic, and I was alone when I first went to see the surgeon and all the other specialists before the surgery but otherwise, my wonderful husband has been driving me and coming with me and he has taken care of all the practical things... and now it was about the treatments and it is never easy - and I have a lot to be considered over an average patient due to all the other conditions that I have.
I use to prepare writing down everything I want to ask the doctor about, and everything Rikard says that he wants to know too. Here the doctors are really informative, they take time to explain things and they answer questions and explain again if one does not understand it at once. I had been studying material delivered by the cancer organization and I had been reading a few books on the subject so I knew a great deal already before - but I did not know anything about the drugs. People are most concerned about the side effects and there is plenty of material about it but not so much about the drugs themselves. Rikard found a two-year-old article from a scientific publication that listed all the drugs used and all the drugs being tested - and I had copied that one and put it in my notebook to see at one glance what the doctor was talking about. (This is just to explain how excited I was, or nervous, or whatever the word - means that I was concentrating enormously). My tumor was hormone negative, fast-growing and fast-spreading one. Not to be treated with hormones, that is. Hormones would not be effective. (A pity on one hand but on the other hand I am happy - I like to remain in my own hormones unaltered, so that they may live their own life as normally as possible). I was hoping it would turn out to be HER2-protein-positive but it turned to be immune to that protein too (no receptors found) so this precise medication cannot be used either. Then the doctor had considered that it would be a two-phase treatment: first, three doses of TAXOTERE and then three doses of CEF which contains three different medications. Neither of these were on my list and I have not yet had time to find out anything about them so I cannot tell much more. I was given a patient guide to those who receiving adjuvant treatments to breast cancer, and I was taken to see the day department where the treatment is given. It looked very cosy, only a few patients at a time and each having their own nurse, doctor available all the time - felt very safe and well organized.
But it turned out there was a problem. TAXOTERE would cause problems in breathing which is not a succeeded combination with asthma, and therefore the doctors will negotiate about its safety together and make up their minds first after consulting other specialists. Again, it would be a pity to lose the most efficient drug since the tumor is already of a difficult type to be treated. On the other hand, it would also be a pity to suffocate already from the first dose (I think this is starting to be some sort of a cancer patient joking). Additionally, something in TAXOTERE also makes it that it causes extreme foot pain - and the doctor got dubious about that too because I have fibromyalgia. - If it will not be TAXOTERE the first three times, then it will be CEF all the six times; not as effective but the next-best solution. After all, nothing our Heavenly Father would not be able to solve!
I have a lot to learn about this - that I cannot know things so much on beforehand. That I have to live one moment at a time. That I have to be prepared to leave from this earth practically any minute. Anything can go wrong, as I have learned from the drugs. - I have been driving the car for so long that leaving this earth all in a sudden is not quite a strange thought to me, it has never been. ANything can happen in the traffic. any time. Still, now it is present in another way which feels a bit more close and concrete. It is not a bad feeling, just that I am trained in planning things ahead and this kind of adjusting is strange to me. As well as focusing on myself too. Suddenly it is my schedule that goes over everything else - holidays, celebrations, everything. Suddenly it is my disease that dictates the family's plans, my employer's doings, I don't even know what everything. I am not used in it. I guess no mother or amployee is.
So - the cytostates will be given in six different doses, over about 6 months' time. After that, three or four weeks again for the body to recover, and then the radial therapy for 5 - 6 weeks. And so far, I will be on sick leave at least till the beginning of December, most likely longer. My hemoglobine has been sinking again so when it is already low to begin with, I will probably be too tired to go to work anyway.
The first treatment will be on Friday next week - the 15th, which is, funny enough, the "Wear Pink" Day as this month is Breast Cancer Awareness Month. Funny - I think I will be wearing pink that day, having at least the colour to cheer me up if it gets too tough otherwise. I don't have to drive myself, I will be paid a taxi by the social security - the doctor will write a certificate for me for that. That is such luxury! And something I am not used to, either.
Life goes on.
Monday, August 16, 2010
Asthma trouble
July 27th, 2010
Asthma trouble
Had an awful night. It was hot, the air didn't move, and I had continuous asthma attacks and could neither breath nor sleep. Took really a lot of asthma medication and feel awfully weak due to it now. Slept first towards morning when opened windows and doors again after the thunder storm and the air was cool and breathable.
This Blog Post has been published earlier on ugrifenno@hotmail.com space at Windows Live. Feel free to add it!
Asthma trouble
Had an awful night. It was hot, the air didn't move, and I had continuous asthma attacks and could neither breath nor sleep. Took really a lot of asthma medication and feel awfully weak due to it now. Slept first towards morning when opened windows and doors again after the thunder storm and the air was cool and breathable.
This Blog Post has been published earlier on ugrifenno@hotmail.com space at Windows Live. Feel free to add it!
Friday, February 12, 2010
Struggling to get more fit
Had a remarkably better day today than the snow storm day was yesterday. I had my tooth repaired - a piece of it had gone missing, now it is whole again - and I started motioning again, because my asthma specialist said that I could. I had the thermal mask on and yet I coughed after having walked for just a short while. I had taken the attack medicine in beforehand, yet after having walked half of the distance, walking started to succeed without immense shortness of breath and an incredible stiffness in legs (since there was not enough oxygen). Still it was by no means normal walking. I don't know how long it will take but I really have to concentrate in my efforts to get more fit now. I don't even know if it is possible, and to which degree, but I must do my best. Both asthma and fibromyalgia make it difficult and they even work together to add on each other's harmful effects, but I still have to try to overcome this really bad and weak physical state.
I have been able to cut my edible cortizone in half, finally! That is really good news - it is a very harmful medicine which anyway has been necessary to maintain breathing and to treat the lungs while the infection has been as worst. My doctor told me to take calcium supplements in order to prevent possible damage to bones. My bones have been scanned and they have been in excellent condition; they should rather stay that way too.
Otherwise there is tons of new snow everywhere but the country just keeps going. Workers have been ploughing snow all through yesterday, last night and today, and you could ask, "What snow storm?" Everything is cleaned, roads are open, no school days or working days were canceled, we have electricity, shops are open... my respect to those who have made all this possible!
Today was a sunny day, really a lot of light when it was reflecting from the white snow all over!
At home, my husband and my older daughter did the shoveling of the snow. How wonderful to have such family members!
I have been able to cut my edible cortizone in half, finally! That is really good news - it is a very harmful medicine which anyway has been necessary to maintain breathing and to treat the lungs while the infection has been as worst. My doctor told me to take calcium supplements in order to prevent possible damage to bones. My bones have been scanned and they have been in excellent condition; they should rather stay that way too.
Otherwise there is tons of new snow everywhere but the country just keeps going. Workers have been ploughing snow all through yesterday, last night and today, and you could ask, "What snow storm?" Everything is cleaned, roads are open, no school days or working days were canceled, we have electricity, shops are open... my respect to those who have made all this possible!
Today was a sunny day, really a lot of light when it was reflecting from the white snow all over!
At home, my husband and my older daughter did the shoveling of the snow. How wonderful to have such family members!
Saturday, February 6, 2010
Everything cannot be cured
Such a bad day, asthma-wise. Anything triggers an attack: laughing, having a shower, just whatever. Snow-storm out-doors, and I suffer from a bad case of fibro fog too, added with a really deep blue. I am starting to think that I will really never get well anymore. Illnesses are like that sometimes. Everything cannot be cured. BOnus: some friends seem to think that now is the appropriate time to turn their back to me. So I can only think that I now know them better than I did before.
Tuesday, January 19, 2010
Sorry
Why is it that I feel I should apologize for annoying people with illness issues I write on my blog? I don't apologize anyway because this is an illness blog as I have stated. Reading is voluntary: those who are interested, read. And nowadays, honestly, with all these problems and feelings around them and everything... I just cannot focus on much else. Today I am trying to overcome my deep disappointment for not being able to cut down on steroids as planned. But every medicine I take now is essential for my life and in the end I am now struggling to keep alive so I just have to take what is essential. If I cannot live without something, I take it. It is as simple as that.
More than anything I value my family who wholeheartedly support me all the way. More than anything I value my true friends who stay with me because now very many take distance. They may as well go. I have today cleaned some of my sites from contacts that I did not anymore consider worth while. I have said goodbye to a dear (former) friend who has more interesting things going on in his life and things so well he does not need me anymore. That is life, and i try not to feel sad but relieved.
I have blocked people from IM / chat to be available for those who are true friends and don't play games and have fun with other people.
I trust that God is not leaving me alone. I also appreciate my colleagues who today have been in touch after a long silence. I was already thinking I was not even missed but yes I am - they needed to ask things from me, talk with me, hear my opinion... feels good.
I wish to get well enough to be there for my family, and not to be the kind of zombie I have been today. Today this was all I could do. Perhaps tomorrow will be a better day - after all, I am back to the original dose of steroids so it could be. But to what price...
When do I need professional help to overcome all these emotions and frustrations? Will writing about them be enough? What could I do? Write an e-book? Why not, to myself... Blogs, social media etc are after all so fragmentary and sometimes I feel I'd need to process text which has length and cronology and which would be stilisized before publishing.
My Pidgin contacts list looks odd now as I have reorganized it to serve my needs better. I will get used to it.
More than anything I value my family who wholeheartedly support me all the way. More than anything I value my true friends who stay with me because now very many take distance. They may as well go. I have today cleaned some of my sites from contacts that I did not anymore consider worth while. I have said goodbye to a dear (former) friend who has more interesting things going on in his life and things so well he does not need me anymore. That is life, and i try not to feel sad but relieved.
I have blocked people from IM / chat to be available for those who are true friends and don't play games and have fun with other people.
I trust that God is not leaving me alone. I also appreciate my colleagues who today have been in touch after a long silence. I was already thinking I was not even missed but yes I am - they needed to ask things from me, talk with me, hear my opinion... feels good.
I wish to get well enough to be there for my family, and not to be the kind of zombie I have been today. Today this was all I could do. Perhaps tomorrow will be a better day - after all, I am back to the original dose of steroids so it could be. But to what price...
When do I need professional help to overcome all these emotions and frustrations? Will writing about them be enough? What could I do? Write an e-book? Why not, to myself... Blogs, social media etc are after all so fragmentary and sometimes I feel I'd need to process text which has length and cronology and which would be stilisized before publishing.
My Pidgin contacts list looks odd now as I have reorganized it to serve my needs better. I will get used to it.
New appointment
Right - I got a new appoinntment for the asthma specialist. Got to go to see him again in two weeks because diminishing cortizon is not succeeding. In case it should start succeeding in the meanwhile, I can always cancel the appointmant.
Struggling
Here I am again. It is the third week on sick leave now, and the sick leave is supposed to go on two weeks still, till the end of January.
I have been to my ordinary doctor twice, and to the asthma specialist once (it was last week Wednesday). The ordinary one had some lab tests made and I called her to hear what she thought of them. At least thyroid is functioning normally, it is not the cause of sleepiness and drowsiness and exhaustedness. Also the Central hospital is tracing the cause of my tiredness and I have had sleep registration done, and after that they wanted to have the thyroid tests made too, so I have been in those testsa twice. Still I have no results from the registration, and I have not been asked to see the doctor there either.
X-rays show no new damages done to lungs, they are ok in spite of the swine flu which I had in the end of last November, which was this time the beginning of this evil which I am now going through. It is just the asthma which is now hyperreactive. The specialist told to me about healthy young men who had got permanent damage done to their lungs due to the swine flu. I can consider myself blessed since I got nothing.
I got instructions from the specialist last week on how to gradually drop the size of the cortizone dose, and I thought of course that would be it. Cortizone is not a very good medicine to take for a long time. I have now taken it for about 8 weeks, without being able to stop - when I have stopped, it has made the situation worse, and I have been forced to start again. Now I was dropping it to half, from 40 mg to 20 mg, yesterday.
As a result I stayed awake most of the night, making everyone in Twitter insane I am sure by tweeting continuously - for what else is there to do when everybody sleeps... except those who are online? I had several fierce attacks of asthma which made sleeping impossible. I took my medication in the morning, again just 20 mg, not thinking about it because I have a dosette for medicine and I take what I have put in there. The attacks went on all mnorning.
When I was having lunch and talking to my dear husband, I suddenly realized the connection between the decreased cortizon dose and the increased attacks. I was thinking about it and realized that I have no choice - I have to add on that 20 mg again. And I did.
I feel so frustrated. There are contraindications: I have glaucoma, diabetes, overweight - not good to combine with cortizone, any of them.
I have been to opthalmologist too, last week. There was no damage in the eyes to be seen, I got prescription for a new pair of glasses and found a nice pair for both ordinary progressive glasses and screen glasses (which my employer will pay for). Neither was the eye pressure too high. It was within the normal range, although in the upper end of it, and I was told to come again in a year.
Actually I was so happy that "doctor day" when I had both opthalmologist and asthma specialist and saw a lot of people and went shopping and talked to optician and tried on new glasses and joked and.... I have been so isolated here at home, and I have isolated myself even more, not being available online, just using Twitter, not having enough energy to write emails or letters or anything... okey... I was so happy after all these PEOPLE things that it felt really good. Even husband noticed the change.
Actually, he will be taking me out to lunch on Thursday when he has not the entire day scheduled at work. Feels good.
SO, X-rays were good. Eyes were ok, it was just good news from the opthalmologist. And I like the new glasses though they are not ready yet.
Then there was blood in the urine. You start to think of all kinds of things when you see that. ANd when I called my doctor she wanted to see me personally. I have truly never been as scared as I was the day before I went to see her, and that special day.
It was no infection, there was no bacteria. It was neither anyhing else that could be seen or found in her surgery. Everything was perfectly clean and healthy, which was such a relief. She also said I was not menopausal (I think I know that - ).. I asked if it could be that kidneys are failing, and she said absolutely no. But she also ordered new lab tests to make sure it was just something occasional. So what I feared so much seemed to be nothing at all - at least nothing yet. Except new tests.
Now I am just feeling frustrated. It seems a never-ending battle with that cortizone. Why cannot I do without it, or even with a smaller amount of ii? I will have to try again, after a few days.... maybe next week? I also need a new appointment with my specialist in that case but I was just online and had a look but the only time there was was today. So maybe he will give new times today when he comes to the surgery. I must go and have a look after 3 p.m. forf he usually starts then.
I feel so trapped with this cortizone.
SO really trapped. Without it, I can't breathe. But it is not good to have forever either.... though I know people are on cortizone for long times, some forever. But I haven't been one of them.... I don't want to be.
I have been to my ordinary doctor twice, and to the asthma specialist once (it was last week Wednesday). The ordinary one had some lab tests made and I called her to hear what she thought of them. At least thyroid is functioning normally, it is not the cause of sleepiness and drowsiness and exhaustedness. Also the Central hospital is tracing the cause of my tiredness and I have had sleep registration done, and after that they wanted to have the thyroid tests made too, so I have been in those testsa twice. Still I have no results from the registration, and I have not been asked to see the doctor there either.
X-rays show no new damages done to lungs, they are ok in spite of the swine flu which I had in the end of last November, which was this time the beginning of this evil which I am now going through. It is just the asthma which is now hyperreactive. The specialist told to me about healthy young men who had got permanent damage done to their lungs due to the swine flu. I can consider myself blessed since I got nothing.
I got instructions from the specialist last week on how to gradually drop the size of the cortizone dose, and I thought of course that would be it. Cortizone is not a very good medicine to take for a long time. I have now taken it for about 8 weeks, without being able to stop - when I have stopped, it has made the situation worse, and I have been forced to start again. Now I was dropping it to half, from 40 mg to 20 mg, yesterday.
As a result I stayed awake most of the night, making everyone in Twitter insane I am sure by tweeting continuously - for what else is there to do when everybody sleeps... except those who are online? I had several fierce attacks of asthma which made sleeping impossible. I took my medication in the morning, again just 20 mg, not thinking about it because I have a dosette for medicine and I take what I have put in there. The attacks went on all mnorning.
When I was having lunch and talking to my dear husband, I suddenly realized the connection between the decreased cortizon dose and the increased attacks. I was thinking about it and realized that I have no choice - I have to add on that 20 mg again. And I did.
I feel so frustrated. There are contraindications: I have glaucoma, diabetes, overweight - not good to combine with cortizone, any of them.
I have been to opthalmologist too, last week. There was no damage in the eyes to be seen, I got prescription for a new pair of glasses and found a nice pair for both ordinary progressive glasses and screen glasses (which my employer will pay for). Neither was the eye pressure too high. It was within the normal range, although in the upper end of it, and I was told to come again in a year.
Actually I was so happy that "doctor day" when I had both opthalmologist and asthma specialist and saw a lot of people and went shopping and talked to optician and tried on new glasses and joked and.... I have been so isolated here at home, and I have isolated myself even more, not being available online, just using Twitter, not having enough energy to write emails or letters or anything... okey... I was so happy after all these PEOPLE things that it felt really good. Even husband noticed the change.
Actually, he will be taking me out to lunch on Thursday when he has not the entire day scheduled at work. Feels good.
SO, X-rays were good. Eyes were ok, it was just good news from the opthalmologist. And I like the new glasses though they are not ready yet.
Then there was blood in the urine. You start to think of all kinds of things when you see that. ANd when I called my doctor she wanted to see me personally. I have truly never been as scared as I was the day before I went to see her, and that special day.
It was no infection, there was no bacteria. It was neither anyhing else that could be seen or found in her surgery. Everything was perfectly clean and healthy, which was such a relief. She also said I was not menopausal (I think I know that - ).. I asked if it could be that kidneys are failing, and she said absolutely no. But she also ordered new lab tests to make sure it was just something occasional. So what I feared so much seemed to be nothing at all - at least nothing yet. Except new tests.
Now I am just feeling frustrated. It seems a never-ending battle with that cortizone. Why cannot I do without it, or even with a smaller amount of ii? I will have to try again, after a few days.... maybe next week? I also need a new appointment with my specialist in that case but I was just online and had a look but the only time there was was today. So maybe he will give new times today when he comes to the surgery. I must go and have a look after 3 p.m. forf he usually starts then.
I feel so trapped with this cortizone.
SO really trapped. Without it, I can't breathe. But it is not good to have forever either.... though I know people are on cortizone for long times, some forever. But I haven't been one of them.... I don't want to be.
Friday, January 15, 2010
Agenda for today...
1) measure the the blood sugar of my daughter and give the first insulin shots of the day
2) make breakfast
3) comb the girls for school
4) drive husband home from garage (he had his car on service today), he leaves for work with a 3rd car
5) make the declaration of my late brother's sold house - mine, and my mother's (took all morning!)
6) pack clothes to be sent to the children's 2nd cousin (too small clothes for our girls)
7) brush the car from snow, drive to the post office to post the declarations and the parcel with clothes
8) walk (!!!) to pharmacy to buy some medicine and a support bindage for my daughter's anckle
9) make lunch
10) have lunch with husband
11) call the doctor for lab results
12) make another appointment with the doctor for Monday because she wants to examine something closer.. and this has nothing to do with asthma... new things are coming up all the time... Swallow tears and try to live on with disappointment for a while, it feels difficult to think about yet another thing that's wrong...
13) a short while online, organizing the payments for the next holiday trip to the Mediterranean, and I don't even know if I will be fit to go...
14) drive girls from school(s) to the parish hall where they have "Sunday" school on Fridays
15) go shopping, shop three bags with vegetables
15) discuss for a while with son
16) short while online, reading Twitter messages
17) drive girls home from the parish hall
18) watch tv with the girls, have a good talk about real beauty, i am proud of my girls and their opinions!
19) shortly online, chat with a good friend, avoid telling him much about my health, pass it with jokes
20) drive husband to the garage
21) husband cooks dinner and I get a huge portion of vegetables and I am happy
22) tell son I cannot get a video out of a cd and that he should try since he knows more about it than I do - but perhaps we never see it, I am afraid
23) send an offline message to explain the odd way our laptops work here
24) demand that son behaves and it raises a calamity but in the end the solution is satisfactory
25) comb the girls who have been to sauna
26) watch son lift his bicycle to the basement and the sauna shower room to melt from the snow and ice. He cycles 10 km each day, to work to the local tv station, back to home for lunch, and back to work again - in the snow and cold, and does not complain with a word. I am proud of him. On the other hand cycling makes thirsty and he has almost emptied "my" 1,5 liter bottle with mineral water - another calamity till I asked if husband could buy some more of it next time because he must be thirsty and just plain tap water is not always quite satisfactory if you sweat salts and other minerals too.
27) Now I am here - noticing that it is late, I am dead-tired - exhausted - been a short while on Twitter and met friends, cool - and still I have not done what I have promised already for several days: I have not written to my health (rather: illness) blog in Blogger and told what everything is going on now, and what is not.
Whooooofffff!!!! Call this sick leave?????????????????? Anyone????????????????????
2) make breakfast
3) comb the girls for school
4) drive husband home from garage (he had his car on service today), he leaves for work with a 3rd car
5) make the declaration of my late brother's sold house - mine, and my mother's (took all morning!)
6) pack clothes to be sent to the children's 2nd cousin (too small clothes for our girls)
7) brush the car from snow, drive to the post office to post the declarations and the parcel with clothes
8) walk (!!!) to pharmacy to buy some medicine and a support bindage for my daughter's anckle
9) make lunch
10) have lunch with husband
11) call the doctor for lab results
12) make another appointment with the doctor for Monday because she wants to examine something closer.. and this has nothing to do with asthma... new things are coming up all the time... Swallow tears and try to live on with disappointment for a while, it feels difficult to think about yet another thing that's wrong...
13) a short while online, organizing the payments for the next holiday trip to the Mediterranean, and I don't even know if I will be fit to go...
14) drive girls from school(s) to the parish hall where they have "Sunday" school on Fridays
15) go shopping, shop three bags with vegetables
15) discuss for a while with son
16) short while online, reading Twitter messages
17) drive girls home from the parish hall
18) watch tv with the girls, have a good talk about real beauty, i am proud of my girls and their opinions!
19) shortly online, chat with a good friend, avoid telling him much about my health, pass it with jokes
20) drive husband to the garage
21) husband cooks dinner and I get a huge portion of vegetables and I am happy
22) tell son I cannot get a video out of a cd and that he should try since he knows more about it than I do - but perhaps we never see it, I am afraid
23) send an offline message to explain the odd way our laptops work here
24) demand that son behaves and it raises a calamity but in the end the solution is satisfactory
25) comb the girls who have been to sauna
26) watch son lift his bicycle to the basement and the sauna shower room to melt from the snow and ice. He cycles 10 km each day, to work to the local tv station, back to home for lunch, and back to work again - in the snow and cold, and does not complain with a word. I am proud of him. On the other hand cycling makes thirsty and he has almost emptied "my" 1,5 liter bottle with mineral water - another calamity till I asked if husband could buy some more of it next time because he must be thirsty and just plain tap water is not always quite satisfactory if you sweat salts and other minerals too.
27) Now I am here - noticing that it is late, I am dead-tired - exhausted - been a short while on Twitter and met friends, cool - and still I have not done what I have promised already for several days: I have not written to my health (rather: illness) blog in Blogger and told what everything is going on now, and what is not.
Whooooofffff!!!! Call this sick leave?????????????????? Anyone????????????????????
Tuesday, January 12, 2010
Asthma causing you difficulties in cold weather?
Do you suffer from asthma? DO you have difficulties with cold weather? I had them for years and I did not know about this producer, and nobody gave me the information. Now that I have it, and have used their thermal mask, and have bought one for my son and one for my mother and we can all move freely out in the cold in spite of our asthma - my son cycles to work in -18*C without problem - now I want to share this information with everybody because it is so essential:
Get a thermal mask. There is a producer. Here is the website:
In Finnish: http://www.jonas.fi/fi/
In Swedish: http://www.jonas.fi/se/
In English: http://www.jonas.fi/en/
Get a thermal mask. There is a producer. Here is the website:
In Finnish: http://www.jonas.fi/fi/
In Swedish: http://www.jonas.fi/se/
In English: http://www.jonas.fi/en/
Wednesday, January 6, 2010
Steroids
Steroids improved my outhaling (PEF) values remarkably although they are still very poor, about 50% of the optimum. But it is better than yesterday's 20 - 25 % which means continuous feeling of suffocating and unability to do anything at all. Had several asthma attacks though. This morning (by 9 a.m. which is the time now) I have already had 3 - 4 attcks. Feel weak, tremble from all medication but am able to breathe. For once I am grateful about steroids. I feel the improvement. I have slept a bit better though not a bit longer... How would life feel with a decent sleep? There are things that confuse me and confuse my husband too but he is a great supporter and encourager. Yesterday I opened one social media site which I had not been using for ages, and I found tens of Christmas and New Year greetings from there - it felt like Christmas once more! I had also received messages, and I have found at least yet one who is praying for me - a total stranger but because he is a Christian, he does not feel like a stranger. During this disease, I have been betrayed and let down by one of my closest friends, and therefore it is comforting to see that God is taking care of me - other old friends are there, and complete strangers are used by God to provide me with prayer support. I am completely dependent on other people's prayers, I feel they are holding me above the surface and I feel every prayer in my being. I was praying, together with a friend, to see what plan God has for me because He has "mislocated" me in a country where I don't survive the outdoor air and weather without special equipment. I was praying for me to see some meaning in getting this seriously ill, weak and helpless. And God is answering: first, to show me that I cannot trust one of my best friends... second, that He is taking care of me in the form of even complete strangers, in addition to true good friends and family. Further, that I must and can rely on other people - something I have never been able to do. And still, that it is only Him I need, He will take care of the rest. God bless you all!
Tuesday, January 5, 2010
Depressed, happy, depressed....
No matter how I reason and try to be brave, I cannot help feeling depressed about having to be on steroids again - and looking out of the window and knowing that without special equipment, the out-door air would kill me. Have been shopping with my daughters today and I feel good that I can do it, that I still have income and can take care of their needs, and mine, and my husband's... Lots of wonderful things have happened today and yesterday and I want to say thanks to all of you who recognize yourselves here. You make the difference in my life. Yet there are people who seem to think that I cannot see through lies, and that I don't recognize indifferent attitude when I face one, even if it is masked. That I am ill does not mean that I am an idiot, or somehow immune to indifference. I am not. I could even tell I am nore sensitive than normally, recognize more nuances than I normally do. I pay attention to both good and bad things, and feel deeper about both. Perhaps this disease and this difficult situation was given to me to be able to see clearly - to be able to see who is the real friend and who is ready to let me down, for whatever reason.
Wednesday, December 30, 2009
Back to work, day 3
First day, felt quite well rested and worked full day. Insane weather to drive.
Day 2, fell asleep at least three times when driving to work, insanely tired, worked half day and quitted. Exhausted at home.
Day 3:
Blood pressure sky-rocketed and my husband told me to stay at home and not drive while a) continuously falling asleep when driving and b) having the highest blood pressure ever measured. So I am cleaning my work mail box which I have not opened for one month and which is filled with all kinds of messages - can do it better at home than at work where I am all the time interrupted. Would be quiet days in the office though. Got an appointment scheduled to my doctor on the 4th of January, i.e. immediately after New Year, which is good. - Lungs still on half capacity and asthma keeping me awake from (too) early morning. Miettii
Day 2, fell asleep at least three times when driving to work, insanely tired, worked half day and quitted. Exhausted at home.
Day 3:
Blood pressure sky-rocketed and my husband told me to stay at home and not drive while a) continuously falling asleep when driving and b) having the highest blood pressure ever measured. So I am cleaning my work mail box which I have not opened for one month and which is filled with all kinds of messages - can do it better at home than at work where I am all the time interrupted. Would be quiet days in the office though. Got an appointment scheduled to my doctor on the 4th of January, i.e. immediately after New Year, which is good. - Lungs still on half capacity and asthma keeping me awake from (too) early morning. Miettii
Tuesday, December 29, 2009
I slept about 4 to 5 hours last night. I have made sleeping a priority so I finished all activities by 10 p.m. and went to bed. It took about 3 to 4 hours before I could fall asleep because I had pains and aches all over due to "fibro" and I just could not sleep or even stay in bed all the time due to them. I could not ease them either, all medication I can take was already taken and nothing else seemed to work either. I did not wake up too early due to asthma though like I use to do. Anyway since I am continuously sleep-deprived, I found myself at least three times falling asleep when I was driving. Twice I was about to drive off the road, and at least once I found myself on the opposite lane. Of course the weather is also at its most interesting these days and I was driving to work in a snow storm. Had the first attack of asthma already when walking to the car at home; the second one when almost at work but driving still. This is not going to be a long day at work, I already feel really exhausted due to those attacks so that my hands are shaking. But I must wait till lunch hour so that I can eat before I go. - Bought a new PEF meter yesterday because my old one got broken. Measured this morning: my lungs work on half capacity. That is not really a lot. Now lunch, then back home.
Friday, December 18, 2009
Too cold for me to breathe
It is -24 C and it makes me cry because I can't breathe in such a coldness. My heater for inhaled air has arrived to post office though. #asthma
Thursday, December 3, 2009
In the sanatorium due to asthma
I have driven 400 km north from where I live and I am currently in Oulu, in a sanatorium (or rehabilitating institute as the modern term is I think). I arrived on Tuesday for a two weeks' stay in order to get my asthma in balance again. It will take a lot more than two weeks - but at least to get the process started. Today I have seen the doctor and he has told me what I already knew: my asthma is completely out of balance. I have difficulties in walking, talking, just everything. This is not really good news, I know and I am sorry. Now I am on steroids again, and quite a heavy dose too. We are a group of 6 and the group is very supportive. When I told them that the doctor had forbidden all motioning for me, they said they would not have taken me with them motioning anyway. LOL! Tomorrow I will see the nurse and the physiotherapist. I am completely exhausted even after today though I only had two group meetings and then the appointment to the doctor who examined me. It is only 300 - 400 meters to the island where all the doctors, nurses and meeting rooms are but it takes me an eternity to walk there, and every walk means an asthma attack.
Thursday, November 26, 2009
Swine flu, continued
HAd a couple of days tough time. Completely exhausted, had to stay in bed and could not do just anything. Coughed my lungs out. Stayed awake one night due to breathing problems. Had some kind of culmination last night, a sort of a physical feeling added with a thought of the easiness of giving up. I felt that I had come to the point where I could perhaps decide the direction to take: give up and get worse, or reach for overcoming the disease. I have never felt it so clearly before, but this feeling was also physical and it was tangible.
This morning my wonderful husband hugged me and said that I feel better. How did he know, just by hugging me? Blessings of having been married for so long! I love it! Today my temperature has been normal with the strong meds I have. Today I have been sweating every time I do something, eating included. Today I have felt hungry for the first time in days. Today I have been strong enough to take a shower. I have been talking in the phone - part of my voice back, and still coughing my lungs out. Last night I could sleep again. I was woken up by asthma and coughing but it did not make me frightened. I still feel frustrated and useless and I struggle to accept those feelings and the fact that I am useless and can't be anything else right now. I have also felt touched many times today - by kindness and caring. I have heard words that I will treasure in my heart. I have been crying a lot, for all good reasons possible. People talk to me in a kind, soft voice... why, actually? Do I feel and look so ill really? But this is a tough disease. I wish I will overcome it without any further harm. There are people who pray for me - and that touches my heart really a lot.
This morning my wonderful husband hugged me and said that I feel better. How did he know, just by hugging me? Blessings of having been married for so long! I love it! Today my temperature has been normal with the strong meds I have. Today I have been sweating every time I do something, eating included. Today I have felt hungry for the first time in days. Today I have been strong enough to take a shower. I have been talking in the phone - part of my voice back, and still coughing my lungs out. Last night I could sleep again. I was woken up by asthma and coughing but it did not make me frightened. I still feel frustrated and useless and I struggle to accept those feelings and the fact that I am useless and can't be anything else right now. I have also felt touched many times today - by kindness and caring. I have heard words that I will treasure in my heart. I have been crying a lot, for all good reasons possible. People talk to me in a kind, soft voice... why, actually? Do I feel and look so ill really? But this is a tough disease. I wish I will overcome it without any further harm. There are people who pray for me - and that touches my heart really a lot.
Tuesday, November 3, 2009
Quitting Lyrica
Today, I have taken the last tablet of Lyrica. From tomorrow, I am off that medicine! It feels good, really really good! It almost took my life but the status of asthma has stabilized now - although it is not yet perfectly good (it takes time) but it is so much better anyway! It feels like a triumph to finally be in this state! My last day on Lyrica, woooow!!!!
It has been a slow process, quitting that medication, as it has been reduced by and by. Pain is back but usually not too bad to tolerate, and anyway I have been able to use quite strong pain killers that do not trigger asthma. They are not very many though or so it seems. One which was very good resulted in more than one doctor telling me that it can cause heart attacks, so I quitted that too.
What is bothering me most these days is fibro fog - I have it to some extend almost every day and it seems to be somewhere between me and the world. And the other thing that bothers is stiffness. Otherwise I am so much better than before..
I have been in a really bad state due to medication. I hope and pray I don't need to wittness anything like that anymore.
It has been a slow process, quitting that medication, as it has been reduced by and by. Pain is back but usually not too bad to tolerate, and anyway I have been able to use quite strong pain killers that do not trigger asthma. They are not very many though or so it seems. One which was very good resulted in more than one doctor telling me that it can cause heart attacks, so I quitted that too.
What is bothering me most these days is fibro fog - I have it to some extend almost every day and it seems to be somewhere between me and the world. And the other thing that bothers is stiffness. Otherwise I am so much better than before..
I have been in a really bad state due to medication. I hope and pray I don't need to wittness anything like that anymore.
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