11th and 12th October 2010
My stomach was churning with butterflies when I awoke on Monday morning, I had mixed feelings about returning to school for Term 4, I was filled with excitement to actually be attending school for the year, yet I was also nervous,as school does pose some difficulties for me.
The weather was overcast and on the walk to school light droplets of rain fell intermittently from the heavy grey clouds. Chapel was first, which I think was an excellent way to begin the Term, we sang a song which always lifts every ones spirits and then we heard about David and his psalms. He was a lonely Shepherd with no one for company apart from his sheep and he was a talented musician. He spent his hours writing his psalms which he put to the music of his harp. We learnt that when David prayed to God he did not only pray to him when he wanted help or when things went wrong, he also prayed to him in wonder and awe and in times when he was filled with happiness. We too can learn that prayer is a very special gift and you don't have to only pray when you want to ask for your life to be made better, praying for joy is a wonderful thing to do.
After Chapel it was time for PE, I was filled with enthusiasm, I always enjoy PE, however the class were doing the twenty metre beep test, which is a running test to see what an individuals endurance is. Even though I could not participate my teacher let me record the class results. While we were on the oval it began to drizzle with rain which made it quite miserable and cool. The class are going to be doing gymnastics this Term, this will be difficult for me to participate in, so I am a little disappointed.
Next it was time for Integrated Studies, our unit of study this Term is Active Citizenship, I think I am going to thoroughly enjoy this topic especially because our assessment is to do an oral presentation on raising awareness about an issue in our society, I have chosen to talk about raising awareness about Brain Tumours, I am hoping that this will help my class mates further understand what it is all about and how they can help me to help others. We also had to write a list of words and what we thought they meant and then we had to write a reflection on what it means to us to be an Australian Citizen.
When I signed out in the front office for the morning the ladies commented on how well I looked, that made me feel really terrific. I was tired from the morning session and my heel had been distressing me throughout the morning but as I have stated regularly I am trying extremely hard not to let it get to me.
I had a rest when I came home and a welcomed warm drink and morning tea, after resting for an hour I then felt like reading a book and that is exactly what I did until it was time to return to school for the afternoon session.
In the afternoon we returned to school for double English, we are reading the novel Born to Run by Cathy Freeman, I would rate this as the best class novel I have ever had to read, I think it is because I have an interest in athletics. We are also going to be writing a script for a part of the book that we would like to turn into a short movie. We are also doing poetry which is something that I relish in. I was quite fatigued by the end of the school day and could hardly wait to return home for another rest, I am feeling very positive about this Term and think I will be able to cope with the work.
I was able to use my FM Transmitter with my teacher, she has used one before so felt comfortable with it, I found it did make a difference and it was like having her right beside me explaining everything, the only time I had some problems was when the class noise level became louder, I then had to adjust the volume much higher than the audiologist and I had originally anticipated.
Whilst watching the Commonwealth Games on television I had the most torturous pain in my right heel that left me feeling sweaty and in tears. It came on suddenly and I was not even doing anything, just sitting there watching the television. Mum massaged it and applied ice, then heat as well as giving me a stronger pain killer, it eventually eased but was still rather painful when I went to bed.
I woke a few times throughout the night with my heel and ankle in pain and also to go to the toilet a couple of times, sometimes my bladder seems to be a little weak and I have to go to the toilet often, I am not sure if this from my chemotherapy.
Today I did not have school, so I could rest in bed a little longer. I read, played Upwords, answered some emails and had a sleep today. Mum and I are reading the Cathy Freeman book together and we are over half way through it, I would like to share part of a prayer that is in the book "Oh God, guide me and protect me, illuminate the lamp in my heart and make me a brilliant star....". I did my physiotherapy exercises and rode the exercise bike but could only tolerate it for five minutes because of my heel.
My Sydney doctors were supposed to contact my paediatrician to let him know what tests they wanted him to do and then he was to contact me to organise an appointment, we heard nothing either yesterday or today so I am not sure what is happening, I find this very frustrating, I guess that is what happens when you have doctors that are Interstate.
We had running training in the afternoon and as we drove we had a shower of rain which came out of nowhere, the smell of the rain was so revitalising and fresh but as quickly as it came, it disappeared. Jarrett ran exceptionally well during training and had no problems with his asthma or vocal chords. He is racing on Saturday night, it is the beginning of the Summer Competition, there is just one problem, it is only supposed to be twelve degrees here on Saturday, that is almost like Winter, so hopefully it won't be too cold for him.
'I believe that if we worry too much then we waste a lot of our precious energy, we need to appreciate and enjoy each moment of every day'
Tuesday, October 12, 2010
Sunday, October 10, 2010
END OF SCHOOL HOLIDAYS
8th to 10th October 2010
'When a door closes if we look for an open window then we will eventually feel a breeze blow into our lives that gives us hope'
Although my pain continues, I try to conquer it each and every day, I don't give up, I don't sit around feeling sorry for myself and I try not to let it stop me from smiling. My right ankle, heel and left wrist are distressing me but I am rising above the pain as best I can. I am using pain killers, heat, massage and deep heat to assist as well as the power of the mind, I am going to beat this pain eventually.
Friday was a magnificent Spring day in Canberra, the birds were chirping melodiously, the sun sparkled like a diamond and the air was clean and fresh. We played Upwords and Guess Who and went outside to bask in the glorious rays of the sunshine. It was virtually the perfect day, one that you want to freeze in time and not let go of.
My trip to Sydney has been postponed, my paediatrician will now do a thorough examination, bloods and a weigh and measure next week, he will report back to the Sydney Team who will then decide where to go from there. I have been keeping a record of my food intake and my seizures so that it is all documented for my doctor. It is actually a relief for me not to have to go on Monday because it is the start of the last Term of school, I have already missed so much school last year and this year it has been difficult, I just want to be part of my class and enjoy our last term together, a term that is usually filled with many exciting events.
Jarrett had a sports massage, it was a deep tissue one, this is to prepare him ready for the Summer Athletics Season, he, like me suffers from tight muscles and even though he religiously stretches every single day he just needs those muscles to be loosened to assist been able to stretch more successfully. Nalani was very interested in what the sports massage therapist was doing, this is something that she is looking at studying when she finishes school next year. Poor Jarrett though, a deep tissue massage is neither relaxing or painless, it actually leaves him a little sore, then a couple of days afterwards, he feels fantastic, he says it is all worth it then.
We had another game of Upwords and watched some more of the Commonwealth Games on television, it is wonderful how well the Australians are doing as well as some of the less known countries who are receiving medals for the first time in the history of their Country competing.
Saturday morning Jarrett had running training at the AIS, they could not work on the track because the Transplant Games were on, so they did hills at the back of the AIS, by the end of the session, Jarrett's legs were tired from the sports massage. He had no problems again with his asthma or vocal chord dysfunction so is really encouraged by this. While Jarrett was training, Mum, Nalani and I went for a walk, the sun was trying to break through the early morning cloud cover and once it did, it was a beautiful morning.
We played Upwords while having a cup of tea and then Mum and I went for a walk to Gungahlin, I found that my heel was so painful, just a slightly bumpy surface made it throb with dreadful pain which I would rate at a nine out of ten. I had to lift my foot off the footplate on the wheelchair to try to eliminate the pain, then Mum checked my ankle and found that it was swollen as well. If my ankle had not been injured in Sydney at physiotherapy when I was there in September then I probably would have been much more mobile, using my rollator, but it has really delayed my progress and that for me is so frustrating. I had been able to walk around the kitchen and into the family room which would be about thirty metres but now I can't even bear to put weight through my right foot and with my left wrist being weak and sore I can't grip the rollator either. Never mind, I am going to be determined and I do try despite the excruciating pain but I don't want to further injure it and make it worse either.
I rode the exercise bike for ten minutes yesterday, it was only slowly because the rotating motion caused pain in my ankle and heel but I rode a little over one kilometre, at nine minutes I was in sheer agony, I was crying and Mum told me to stop, but I had set myself the goal of ten minutes and I was determined to achieve that. I have also been doing my strengthening exercises every day just hoping that this will all assist in the healing process. I think sometimes I become impatient and want it all to be fixed straight away but I have to accept that it does take time unfortunately.
We watched more of the Commonwealth Games, I was so excited to hear that Louise Ellery, the athlete with a disability who we have actually met, won Australia's first Gold Medal for Track and Field, she won in the shot put, she is a truly inspiring person and is someone who always has a smile on her face.
I love to read, however I have discovered that reading out loud is a difficult task for me because of my hearing loss, I am unable to hear or concentrate on the story, then I am not able to comprehend what I have read. If I read to myself I am able to comprehend much more clearly or if someone else reads to me, that is much easier also. I am learning what my limitations are and that you have to accept these and find an alternative to what you may have been used to doing.
The wonderful and talented Christine sent me her three books, 'Tahlia, You Can Do It!', 'In The Garden Of My Delights' and 'The Hidden Journey', they are marvellous books and all very different. Mum is reading 'The Hidden Journey' to me as it is a touching and emotional story about her husband's battle with a melanoma.
Another sleepless night with pain especially in my heel but I was up ready for running training this morning. The day that greeted us was not ideal, it was rather overcast and a little on the cool side, but it did improve so that we could go for a walk around the AIS whilst Jarrett went for his long run with the squad. The birds were all extremely vocal this morning and we even saw a couple of kookaburra's serenading each other along the trail.
I did some more reading, looked through some recipe books for dinners for next week and went grocery shopping to stock the cupboards ready for our return to school. After lunch I made some Chocolate cupcakes with strawberry icing for Nalani and Jarrett to have on their school lunches tomorrow, they love it when I cook for them.
Tomorrow at school I have Chapel, PE and Integrated Studies in the morning then I will go back after lunch for double English. I will be able to use my FM transmitter for the first time with my teacher and I am excited about the prospect of being able to hear so much more clearly within the classroom, I think this Term is going to be fantastic!
'When a door closes if we look for an open window then we will eventually feel a breeze blow into our lives that gives us hope'
Although my pain continues, I try to conquer it each and every day, I don't give up, I don't sit around feeling sorry for myself and I try not to let it stop me from smiling. My right ankle, heel and left wrist are distressing me but I am rising above the pain as best I can. I am using pain killers, heat, massage and deep heat to assist as well as the power of the mind, I am going to beat this pain eventually.
Friday was a magnificent Spring day in Canberra, the birds were chirping melodiously, the sun sparkled like a diamond and the air was clean and fresh. We played Upwords and Guess Who and went outside to bask in the glorious rays of the sunshine. It was virtually the perfect day, one that you want to freeze in time and not let go of.
My trip to Sydney has been postponed, my paediatrician will now do a thorough examination, bloods and a weigh and measure next week, he will report back to the Sydney Team who will then decide where to go from there. I have been keeping a record of my food intake and my seizures so that it is all documented for my doctor. It is actually a relief for me not to have to go on Monday because it is the start of the last Term of school, I have already missed so much school last year and this year it has been difficult, I just want to be part of my class and enjoy our last term together, a term that is usually filled with many exciting events.
Jarrett had a sports massage, it was a deep tissue one, this is to prepare him ready for the Summer Athletics Season, he, like me suffers from tight muscles and even though he religiously stretches every single day he just needs those muscles to be loosened to assist been able to stretch more successfully. Nalani was very interested in what the sports massage therapist was doing, this is something that she is looking at studying when she finishes school next year. Poor Jarrett though, a deep tissue massage is neither relaxing or painless, it actually leaves him a little sore, then a couple of days afterwards, he feels fantastic, he says it is all worth it then.
We had another game of Upwords and watched some more of the Commonwealth Games on television, it is wonderful how well the Australians are doing as well as some of the less known countries who are receiving medals for the first time in the history of their Country competing.
Saturday morning Jarrett had running training at the AIS, they could not work on the track because the Transplant Games were on, so they did hills at the back of the AIS, by the end of the session, Jarrett's legs were tired from the sports massage. He had no problems again with his asthma or vocal chord dysfunction so is really encouraged by this. While Jarrett was training, Mum, Nalani and I went for a walk, the sun was trying to break through the early morning cloud cover and once it did, it was a beautiful morning.
We played Upwords while having a cup of tea and then Mum and I went for a walk to Gungahlin, I found that my heel was so painful, just a slightly bumpy surface made it throb with dreadful pain which I would rate at a nine out of ten. I had to lift my foot off the footplate on the wheelchair to try to eliminate the pain, then Mum checked my ankle and found that it was swollen as well. If my ankle had not been injured in Sydney at physiotherapy when I was there in September then I probably would have been much more mobile, using my rollator, but it has really delayed my progress and that for me is so frustrating. I had been able to walk around the kitchen and into the family room which would be about thirty metres but now I can't even bear to put weight through my right foot and with my left wrist being weak and sore I can't grip the rollator either. Never mind, I am going to be determined and I do try despite the excruciating pain but I don't want to further injure it and make it worse either.
I rode the exercise bike for ten minutes yesterday, it was only slowly because the rotating motion caused pain in my ankle and heel but I rode a little over one kilometre, at nine minutes I was in sheer agony, I was crying and Mum told me to stop, but I had set myself the goal of ten minutes and I was determined to achieve that. I have also been doing my strengthening exercises every day just hoping that this will all assist in the healing process. I think sometimes I become impatient and want it all to be fixed straight away but I have to accept that it does take time unfortunately.
We watched more of the Commonwealth Games, I was so excited to hear that Louise Ellery, the athlete with a disability who we have actually met, won Australia's first Gold Medal for Track and Field, she won in the shot put, she is a truly inspiring person and is someone who always has a smile on her face.
I love to read, however I have discovered that reading out loud is a difficult task for me because of my hearing loss, I am unable to hear or concentrate on the story, then I am not able to comprehend what I have read. If I read to myself I am able to comprehend much more clearly or if someone else reads to me, that is much easier also. I am learning what my limitations are and that you have to accept these and find an alternative to what you may have been used to doing.
The wonderful and talented Christine sent me her three books, 'Tahlia, You Can Do It!', 'In The Garden Of My Delights' and 'The Hidden Journey', they are marvellous books and all very different. Mum is reading 'The Hidden Journey' to me as it is a touching and emotional story about her husband's battle with a melanoma.
Another sleepless night with pain especially in my heel but I was up ready for running training this morning. The day that greeted us was not ideal, it was rather overcast and a little on the cool side, but it did improve so that we could go for a walk around the AIS whilst Jarrett went for his long run with the squad. The birds were all extremely vocal this morning and we even saw a couple of kookaburra's serenading each other along the trail.
I did some more reading, looked through some recipe books for dinners for next week and went grocery shopping to stock the cupboards ready for our return to school. After lunch I made some Chocolate cupcakes with strawberry icing for Nalani and Jarrett to have on their school lunches tomorrow, they love it when I cook for them.
Tomorrow at school I have Chapel, PE and Integrated Studies in the morning then I will go back after lunch for double English. I will be able to use my FM transmitter for the first time with my teacher and I am excited about the prospect of being able to hear so much more clearly within the classroom, I think this Term is going to be fantastic!
Thursday, October 7, 2010
PHYSIOTHERAPY AND BLOOD TEST RESULTS
6th and 7th October 2010
It is dreadful to never have a night without waking to either go to the toilet, in pain, with joint stiffness or nightmares. When you don't sleep well you wake feeling tired and then to have to try to function during the day, this is not always easy, however I am not one to sit back and feel sorry for myself even when I honestly feel atrocious. I always try to do my best and stay totally positive and focused.
Wednesday was supposed to be overcast and wet but to my surprise the sun was shinning down from the sky, it was like everyone in heaven was smiling down on the Earth and delighted with what they saw. We played Upwords and Guess Who, we sorted through Christmas decorations to see if we needed anything new for this year and Nalani and Jarrett helped me print out photographs for my photo frame for Mum.
In the afternoon we made Mum a Chocolate Mudcake for her Birthday, it smelt so mouth watering scrumptious when it was cooking in the oven and it looked a treat once it was iced with a sweet, chocolate fudge icing. We could hardly wait to taste it at dinner that night, we were having dinner for Mum the night before her Birthday because on her Birthday it was running training so dinner is later.
We had a barbecue chicken and salads for dinner, Mum loves salads especially potato salad and coleslaw so we made sure we had those. Then it was time for the cake, Mum was amazed, I thought she might cry, we decorated each piece with strawberries and cream, we gave Mum extra cream and strawberries! It tasted even better than it looked and everyone was left with the feeling they had just tasted a piece of paradise.
After dinner we gave Mum her presents and she actually did shed a tear when I gave her the photo frame that I had made, she put it on her bedside table so she could look at it just before going to sleep and first thing when she wakes up, the photographs I put in it were one of me with Theodore and one of Mum and I. We also gave her a hair straightener, earrings, perfume and a top. Dad gave her a voucher to have her hair done, she has not been to the hairdressers to spoil herself in over twelve months so she really deserves to have something lovely done for herself. Nana and Pop gave her a really beautiful hand bag, purse and a skirt. Mum said she really loved all her presents but the greatest gift was been able to be with all the family this year to celebrate her special day.
We watched the Commonwealth Games then on television, I am enjoying watching the cycling and was hoping to be able to watch the athletics but that was on way too late for me although with waking during the night I could probably sit up and watch the Games to put myself back to sleep.
Light rain gently fell from the sky overnight, providing a refreshing drink to all the flourishing Spring lawns and gardens. The morning was overcast which I was disappointed about because I wanted the sun to shine brightly on Mum's Birthday, eventually the clouds departed as they were whisked away by a chilly Spring breeze and the sun shone brilliantly for Mum.
I had physiotherapy with Rhiannon and I could hardly wait, my left wrist had given me grief during the night and perhaps due to the rain, it was extremely troublesome this morning. Rhiannon worked on my ankle which is still painful to put too much weight through and we mentioned that my heel had also been giving me some pain so she checked it only to discover that it was all bumpy, she described it like lots of rice bubbles, this is caused from my ankle injury, muscles and nerves in other areas become affected. Then she worked on my wrist and even though it was painful when she checked it, when she massaged it, I felt such a relief from the pain, it was marvellous. She then gave me some exercises, one with a rubber band and one with some play doh it is to help maintain muscle strength even though it is painful so that I will be able to grip things like cups and my rollator. I don't know what I would do without Rhiannon she is like a guardian angel, looking over me, helping me when I need it most.
We had time for a game of Upwords before having to go to the doctors for my blood test results, they were extremely interesting. It appears that I have an elevated ferritin level which can occur when you have high doses of chemotherapy but it should have come down by now, it can then be indicative of an infection, inflamation or liver disease. I also have a low serum/plasma folate level which is often associated with malabsorption. My vitamin B12 level is elevated and this can be from liver disease or myeloproliferative disorders. I have low phosphate levels and should be having a phosphate supplement and high Urea levels. My thyroid function in also on the low side. My doctor wants me to have the blood tests redone in one week to see if there is any change in the results and then wants to do further investigations. He thought that Sydney should have picked these up when I was there, he is particularly concerned about the folate and ferritin.
Nalani also had to see the doctor because her wart that she had frozen and then cut has come up again, it is actually a little painful so she had to have it frozen again and she has to go back in two weeks to have it cut and then re-frozen again, hopefully this will get rid of it permanently although she may have to have it frozen a few more times.
We had running training in the afternoon, Jarrett ran fantastically and with no asthma problems, he was able to use his breathing techniques and is finding it easier each time. We actually noticed that one of the Australian Cyclists was using breathing techniques similar to Jarrett's prior to their race.
Jarrett looked up the results of the athletics results and found that in the 5000m that the time he ran of 15:58:00 would have placed him in 20th place, his time beat the time of three athletes that were in the Commonwealth Games, that really gave him confidence and inspired him. Melissa Breen who runs at the AIS was in the 100m heats and she has qualified for the finals, it would be incredible if she won a medal, we have seen her run often and she is simply magnificent.
My hand is aching but I just had to type my Blog it is so important for me to share this journey with you all.
It is dreadful to never have a night without waking to either go to the toilet, in pain, with joint stiffness or nightmares. When you don't sleep well you wake feeling tired and then to have to try to function during the day, this is not always easy, however I am not one to sit back and feel sorry for myself even when I honestly feel atrocious. I always try to do my best and stay totally positive and focused.
Wednesday was supposed to be overcast and wet but to my surprise the sun was shinning down from the sky, it was like everyone in heaven was smiling down on the Earth and delighted with what they saw. We played Upwords and Guess Who, we sorted through Christmas decorations to see if we needed anything new for this year and Nalani and Jarrett helped me print out photographs for my photo frame for Mum.
In the afternoon we made Mum a Chocolate Mudcake for her Birthday, it smelt so mouth watering scrumptious when it was cooking in the oven and it looked a treat once it was iced with a sweet, chocolate fudge icing. We could hardly wait to taste it at dinner that night, we were having dinner for Mum the night before her Birthday because on her Birthday it was running training so dinner is later.
We had a barbecue chicken and salads for dinner, Mum loves salads especially potato salad and coleslaw so we made sure we had those. Then it was time for the cake, Mum was amazed, I thought she might cry, we decorated each piece with strawberries and cream, we gave Mum extra cream and strawberries! It tasted even better than it looked and everyone was left with the feeling they had just tasted a piece of paradise.
After dinner we gave Mum her presents and she actually did shed a tear when I gave her the photo frame that I had made, she put it on her bedside table so she could look at it just before going to sleep and first thing when she wakes up, the photographs I put in it were one of me with Theodore and one of Mum and I. We also gave her a hair straightener, earrings, perfume and a top. Dad gave her a voucher to have her hair done, she has not been to the hairdressers to spoil herself in over twelve months so she really deserves to have something lovely done for herself. Nana and Pop gave her a really beautiful hand bag, purse and a skirt. Mum said she really loved all her presents but the greatest gift was been able to be with all the family this year to celebrate her special day.
We watched the Commonwealth Games then on television, I am enjoying watching the cycling and was hoping to be able to watch the athletics but that was on way too late for me although with waking during the night I could probably sit up and watch the Games to put myself back to sleep.
Light rain gently fell from the sky overnight, providing a refreshing drink to all the flourishing Spring lawns and gardens. The morning was overcast which I was disappointed about because I wanted the sun to shine brightly on Mum's Birthday, eventually the clouds departed as they were whisked away by a chilly Spring breeze and the sun shone brilliantly for Mum.
I had physiotherapy with Rhiannon and I could hardly wait, my left wrist had given me grief during the night and perhaps due to the rain, it was extremely troublesome this morning. Rhiannon worked on my ankle which is still painful to put too much weight through and we mentioned that my heel had also been giving me some pain so she checked it only to discover that it was all bumpy, she described it like lots of rice bubbles, this is caused from my ankle injury, muscles and nerves in other areas become affected. Then she worked on my wrist and even though it was painful when she checked it, when she massaged it, I felt such a relief from the pain, it was marvellous. She then gave me some exercises, one with a rubber band and one with some play doh it is to help maintain muscle strength even though it is painful so that I will be able to grip things like cups and my rollator. I don't know what I would do without Rhiannon she is like a guardian angel, looking over me, helping me when I need it most.
We had time for a game of Upwords before having to go to the doctors for my blood test results, they were extremely interesting. It appears that I have an elevated ferritin level which can occur when you have high doses of chemotherapy but it should have come down by now, it can then be indicative of an infection, inflamation or liver disease. I also have a low serum/plasma folate level which is often associated with malabsorption. My vitamin B12 level is elevated and this can be from liver disease or myeloproliferative disorders. I have low phosphate levels and should be having a phosphate supplement and high Urea levels. My thyroid function in also on the low side. My doctor wants me to have the blood tests redone in one week to see if there is any change in the results and then wants to do further investigations. He thought that Sydney should have picked these up when I was there, he is particularly concerned about the folate and ferritin.
Nalani also had to see the doctor because her wart that she had frozen and then cut has come up again, it is actually a little painful so she had to have it frozen again and she has to go back in two weeks to have it cut and then re-frozen again, hopefully this will get rid of it permanently although she may have to have it frozen a few more times.
We had running training in the afternoon, Jarrett ran fantastically and with no asthma problems, he was able to use his breathing techniques and is finding it easier each time. We actually noticed that one of the Australian Cyclists was using breathing techniques similar to Jarrett's prior to their race.
Jarrett looked up the results of the athletics results and found that in the 5000m that the time he ran of 15:58:00 would have placed him in 20th place, his time beat the time of three athletes that were in the Commonwealth Games, that really gave him confidence and inspired him. Melissa Breen who runs at the AIS was in the 100m heats and she has qualified for the finals, it would be incredible if she won a medal, we have seen her run often and she is simply magnificent.
My hand is aching but I just had to type my Blog it is so important for me to share this journey with you all.
Tuesday, October 5, 2010
SOME RELIEF IN MY RIGHT ARM
4th and 5th October 2010
I was so miserable when I woke on Monday morning, even though I had regained some use of my right arm it was still extremely weak and painful and my left wrist was a total right off, it was swollen and I was in agony. I feel terrible when I complain, there are people out there who are so much worse off than I am and it is extremely selfish of me to feel sorry for myself. These are the times when I have to summon courage and pull myself out of the hole that my pain has put me in.
I played Guess Who with Nalani and Jarrett and then we went to Belconnen to do some Birthday shopping for Mum, her birthday is on Thursday, I have already made her that special photo frame but she deserves some spoiling. My pain bothered me while I was at the shops but I did not want to complain or let it spoil the day. Fortunately, we were able to find exactly what we were looking for quickly and I would say it was quite a successful shopping adventure.
We watched the Commonwealth Games on television, the Opening Ceremony was full of colour and excitement, I was intrigued by the sand art, it was incredible, those men were so talented. Seeing the Australian team march out into the Stadium made you really proud to be an Australian and knowing that some athletes that we have actually met will be competing makes it all the more spectacular. I hope that Jarrett will achieve his dream of representing Australia one day in long distance running and I will be there to see him marching into a Stadium.
In the afternoon we met Tass and Gloria at Federation Square for afternoon tea, we always enjoy their company. Tass has sold 269 of my books, that is why he earned the title of Number One Salesman, he is hoping to reach 300, that would be a mammoth effort and cause for celebration. There are not many books remaining from the original two thousand, it looks like a reprint will be going ahead before the end of the year, there is a possibility that every school library in Australia will purchase at least one copy. If a reprint of five thousand books is done and all those books can be sold, that will mean $64, 750 will be raised for Brain Tumour Research, to be able to give that much to help other children in the future would be the most wonderful achievement for me. If through my journey and my wish I can actually make a difference in the way Brain Tumours are treated and aim towards an eventual cure how splendiferous would that be! I am still convinced my journey has been given to me for that reason - to really change the world in the area of Brain Tumours.
When we were coming home from the afternoon tea, I looked out the car window and saw the most resplendent rainbow, arching luxuriously across the afternoon sky. I was wondering if it was a rainbow for me, sent to help take away my pain and give me hope for another day.
Last night whilst nursing my painful wrist, arm and ankle I watched the Commonwealth Games, I actually enjoyed watched the female weight lifters, I saw the 48kg class, that is Jarrett's weight and they were lifting up to 77kg, it must put such a strain on their backs and knees. I went to bed still in pain but hopeful that in the morning I would have some relief. I listen to music to go to sleep as I still constantly have ringing in my ears the music provides a distraction to the ringing.
My night was interrupted as usual, however some marvellous news was that my right arm had improved when I woke, although I could not grip anything and it was still painful and weak, at least I had some use in it. Perhaps that rainbow yesterday was sent especially for me to ease my symptoms slightly and a little is better than nothing at all. I had to have my left wrist bandaged though as it gives it some relief and support, I also required the stronger pain relief.
I played Upwords with Nalani and then Guess Who with Jarrett, it is fantastic to have them home with me and being able to spend time with them. They are so busy with homework and other activities normally that we don't have as much time as I would like to spend together.
The skies were a luminous crystal clear blue and the sun was radiant with fluffy, delicate, cotton wool like clouds drifting gently across them. We had some bills to pay, banking to do and finishing off Mum's Birthday shopping, so went for a vigorous walk to Gungahlin. I love the sun warming my petite body, it did not ease the pain in my wrist, ankle and knee but it always brightens my spirit.
We have running training this afternoon and I am hoping that the sun will remain as lustrous as it is at present so we can go for a walk around the oval while Jarrett is training. I am still waiting to hear from the IPC people in regards to my classification as Jennie thought it should be lower, hopefully we will hear before summer competition begins on 16th October.
I have a doctors appointment on Thursday to find out results of my recent blood tests and to see if he has received any information from Sydney, also Nalani has to have her wart frozen again as it has come back up, not as large as last time but it has reappeared, this is quite common and hopefully one more freezing will get rid of it.
'When clouds finally clear, when pain eases just a little , when you see the first sparkling star at night that is when hope has come and brought a rainbow into your life'
I was so miserable when I woke on Monday morning, even though I had regained some use of my right arm it was still extremely weak and painful and my left wrist was a total right off, it was swollen and I was in agony. I feel terrible when I complain, there are people out there who are so much worse off than I am and it is extremely selfish of me to feel sorry for myself. These are the times when I have to summon courage and pull myself out of the hole that my pain has put me in.
I played Guess Who with Nalani and Jarrett and then we went to Belconnen to do some Birthday shopping for Mum, her birthday is on Thursday, I have already made her that special photo frame but she deserves some spoiling. My pain bothered me while I was at the shops but I did not want to complain or let it spoil the day. Fortunately, we were able to find exactly what we were looking for quickly and I would say it was quite a successful shopping adventure.
We watched the Commonwealth Games on television, the Opening Ceremony was full of colour and excitement, I was intrigued by the sand art, it was incredible, those men were so talented. Seeing the Australian team march out into the Stadium made you really proud to be an Australian and knowing that some athletes that we have actually met will be competing makes it all the more spectacular. I hope that Jarrett will achieve his dream of representing Australia one day in long distance running and I will be there to see him marching into a Stadium.
In the afternoon we met Tass and Gloria at Federation Square for afternoon tea, we always enjoy their company. Tass has sold 269 of my books, that is why he earned the title of Number One Salesman, he is hoping to reach 300, that would be a mammoth effort and cause for celebration. There are not many books remaining from the original two thousand, it looks like a reprint will be going ahead before the end of the year, there is a possibility that every school library in Australia will purchase at least one copy. If a reprint of five thousand books is done and all those books can be sold, that will mean $64, 750 will be raised for Brain Tumour Research, to be able to give that much to help other children in the future would be the most wonderful achievement for me. If through my journey and my wish I can actually make a difference in the way Brain Tumours are treated and aim towards an eventual cure how splendiferous would that be! I am still convinced my journey has been given to me for that reason - to really change the world in the area of Brain Tumours.
When we were coming home from the afternoon tea, I looked out the car window and saw the most resplendent rainbow, arching luxuriously across the afternoon sky. I was wondering if it was a rainbow for me, sent to help take away my pain and give me hope for another day.
Last night whilst nursing my painful wrist, arm and ankle I watched the Commonwealth Games, I actually enjoyed watched the female weight lifters, I saw the 48kg class, that is Jarrett's weight and they were lifting up to 77kg, it must put such a strain on their backs and knees. I went to bed still in pain but hopeful that in the morning I would have some relief. I listen to music to go to sleep as I still constantly have ringing in my ears the music provides a distraction to the ringing.
My night was interrupted as usual, however some marvellous news was that my right arm had improved when I woke, although I could not grip anything and it was still painful and weak, at least I had some use in it. Perhaps that rainbow yesterday was sent especially for me to ease my symptoms slightly and a little is better than nothing at all. I had to have my left wrist bandaged though as it gives it some relief and support, I also required the stronger pain relief.
I played Upwords with Nalani and then Guess Who with Jarrett, it is fantastic to have them home with me and being able to spend time with them. They are so busy with homework and other activities normally that we don't have as much time as I would like to spend together.
The skies were a luminous crystal clear blue and the sun was radiant with fluffy, delicate, cotton wool like clouds drifting gently across them. We had some bills to pay, banking to do and finishing off Mum's Birthday shopping, so went for a vigorous walk to Gungahlin. I love the sun warming my petite body, it did not ease the pain in my wrist, ankle and knee but it always brightens my spirit.
We have running training this afternoon and I am hoping that the sun will remain as lustrous as it is at present so we can go for a walk around the oval while Jarrett is training. I am still waiting to hear from the IPC people in regards to my classification as Jennie thought it should be lower, hopefully we will hear before summer competition begins on 16th October.
I have a doctors appointment on Thursday to find out results of my recent blood tests and to see if he has received any information from Sydney, also Nalani has to have her wart frozen again as it has come back up, not as large as last time but it has reappeared, this is quite common and hopefully one more freezing will get rid of it.
'When clouds finally clear, when pain eases just a little , when you see the first sparkling star at night that is when hope has come and brought a rainbow into your life'
Sunday, October 3, 2010
MY WEEKEND
2nd and 3rd October 2010
I am determined not to be vanquished by my pain which still torments me every day, stronger pain killers do assist but they don't take it away completely and often they only numb it for a short period of time, not even long enough to last until my next dose of medication. My night had again been thwarted with pain in my left wrist and right ankle, it not only keeps me awake but also Mum who continues to be my rock, always there no matter what time of the day holding my hand, been my personal nurse and doing everything she humanly can to try to help.
Overcast skies were present as we drove to running training for Jarrett at the AIS, Dad had left at dawn to go to work, so it was just Mum, Jarrett, Nalani and I. Tiny spits of rain appeared on the windscreen as we drove but nothing major came of it. Jarrett was doing 300m repetitions and he was flying, his new breathing exercises seem to be assisting him although he did say that at a high intensity it is more difficult to concentrate on them than doing them just at home or when doing a gentle run however with more practise, it will become second nature to him. I miss my running and I know Nalani does also, sometimes I close my eyes and visualise myself running, my feet pounding fast on the ground as they hit the synthetic surface of the track, the wind blowing my long, curly hair and feeling so free and joyous.
When we came home from running training we played my card game Happily Ever After and then I rode the exercise bike for five minutes, that was all that my ankle could handle without the pain level becoming too intense. We then played two games of Upwords and on both occasions I was able to use all my letters up.
We had a down pour which took us all by surprise and saw Mum racing outside to get the freshly washed clothes off the line, Jarrett helped her and luckily the clothes were only a touch wet and not soaked. We had to pick Dad up from work as the bus time table on the weekend is sparse with buses only coming every hour.
Mum and I were meeting Briana, Taylah and their Mum for afternoon tea at Central Cafe. I have mentioned Briana before on my Blog, she had surgery on her leg, she was in a wheelchair for a little while and we were going to have a race but never got around to it. She has now fully recovered and is even back to playing netball, I am so pleased that everything went so well for her she is a really lovely friend. It was so wonderful to catch up with them and all their news as well as sharing our news. I find though that I am tiring so easily lately, I think that my pain causes this, as well as a lack of sleep.
Nalani and Jarrett watched the AFL Grand Final, Nalani is a St Kilda supporter and Jarrett was going for Collingwood. Nalani was so disappointed with the game especially after how close it had been the week before, perhaps the result would have been different if they had of played extra time last weekend instead of having to replay it a week later.
Last night we had take away dinner to Celebrate Dad's promotion to his new job, we are all really proud of him. We then watched a free Paddle Pop movie I had got in a Total Girl magazine, it was actually quite good, it was an adventure, mystery movie, with a villain and everything.
Daylight savings began at 2am but before we went to bed we wound our clocks forward one hour. Overnight it poured raining, I heard it because I had woken several times throughout the night with pain in my left wrist, right ankle and pain in my right arm. When I was in the bathroom this mornign I felt a little strange, I called to Mum, she came and then next thing I knew my right arm had dropped again and I felt so exhausted. I had experienced another absence seizure, Mum said that my eyes had dilated again and I had gone all distant again. I had to put my arm in a sling again because it was just hanging there, painful and throbbing.
We had running training this morning, the rain had stopped but the sky was ominous, those clouds looked like they were going to open up and let a flood of rain come out any time. While Jarrett went for his long run, we went for a walk, it was quite humid even though it was overcast, the fresh air raised my spirits and we saw the rabbits again outside their burrows along the walk, they are growing so quickly and don't seem to be as afraid of people now.
After running training we headed to the Runners Shop, Jarrett wanted to buy some new spikes to wear for racing on track, after trying on several pairs he decided on Addidas ones that were black and red and very light weight, I think they will help him to run even faster.
Coming home the rain began, it was a light drizzle, then heavier spots, it stopped and then we had patches of rain. It was a good day to play Upwords, we scored for the first time ever and Jarrett won one game and then Nalani won the next one.
My right arm is still totally useless and typing this is causing my left one to ache even more severely. I am having difficulty in holding a cup to drink so have to use a straw, I hope that my right arm will mend quickly, last time it had improved by night time so I am being positive and hoping that it will heal as quickly this time.
The NRL Grand Final is on this afternoon, I wish the Tigers were there, they really deserved to be this year but I guess it was not meant to be. I know some people who would really love the Dragons to win but I don't particular like either team.
I wish to thank everyone that has been commenting on my Blog, I love hearing about your lives, having you encourage me and providing me with positive thoughts, every time I read them you give such hope.
I am determined not to be vanquished by my pain which still torments me every day, stronger pain killers do assist but they don't take it away completely and often they only numb it for a short period of time, not even long enough to last until my next dose of medication. My night had again been thwarted with pain in my left wrist and right ankle, it not only keeps me awake but also Mum who continues to be my rock, always there no matter what time of the day holding my hand, been my personal nurse and doing everything she humanly can to try to help.
Overcast skies were present as we drove to running training for Jarrett at the AIS, Dad had left at dawn to go to work, so it was just Mum, Jarrett, Nalani and I. Tiny spits of rain appeared on the windscreen as we drove but nothing major came of it. Jarrett was doing 300m repetitions and he was flying, his new breathing exercises seem to be assisting him although he did say that at a high intensity it is more difficult to concentrate on them than doing them just at home or when doing a gentle run however with more practise, it will become second nature to him. I miss my running and I know Nalani does also, sometimes I close my eyes and visualise myself running, my feet pounding fast on the ground as they hit the synthetic surface of the track, the wind blowing my long, curly hair and feeling so free and joyous.
When we came home from running training we played my card game Happily Ever After and then I rode the exercise bike for five minutes, that was all that my ankle could handle without the pain level becoming too intense. We then played two games of Upwords and on both occasions I was able to use all my letters up.
We had a down pour which took us all by surprise and saw Mum racing outside to get the freshly washed clothes off the line, Jarrett helped her and luckily the clothes were only a touch wet and not soaked. We had to pick Dad up from work as the bus time table on the weekend is sparse with buses only coming every hour.
Mum and I were meeting Briana, Taylah and their Mum for afternoon tea at Central Cafe. I have mentioned Briana before on my Blog, she had surgery on her leg, she was in a wheelchair for a little while and we were going to have a race but never got around to it. She has now fully recovered and is even back to playing netball, I am so pleased that everything went so well for her she is a really lovely friend. It was so wonderful to catch up with them and all their news as well as sharing our news. I find though that I am tiring so easily lately, I think that my pain causes this, as well as a lack of sleep.
Nalani and Jarrett watched the AFL Grand Final, Nalani is a St Kilda supporter and Jarrett was going for Collingwood. Nalani was so disappointed with the game especially after how close it had been the week before, perhaps the result would have been different if they had of played extra time last weekend instead of having to replay it a week later.
Last night we had take away dinner to Celebrate Dad's promotion to his new job, we are all really proud of him. We then watched a free Paddle Pop movie I had got in a Total Girl magazine, it was actually quite good, it was an adventure, mystery movie, with a villain and everything.
Daylight savings began at 2am but before we went to bed we wound our clocks forward one hour. Overnight it poured raining, I heard it because I had woken several times throughout the night with pain in my left wrist, right ankle and pain in my right arm. When I was in the bathroom this mornign I felt a little strange, I called to Mum, she came and then next thing I knew my right arm had dropped again and I felt so exhausted. I had experienced another absence seizure, Mum said that my eyes had dilated again and I had gone all distant again. I had to put my arm in a sling again because it was just hanging there, painful and throbbing.
We had running training this morning, the rain had stopped but the sky was ominous, those clouds looked like they were going to open up and let a flood of rain come out any time. While Jarrett went for his long run, we went for a walk, it was quite humid even though it was overcast, the fresh air raised my spirits and we saw the rabbits again outside their burrows along the walk, they are growing so quickly and don't seem to be as afraid of people now.
After running training we headed to the Runners Shop, Jarrett wanted to buy some new spikes to wear for racing on track, after trying on several pairs he decided on Addidas ones that were black and red and very light weight, I think they will help him to run even faster.
Coming home the rain began, it was a light drizzle, then heavier spots, it stopped and then we had patches of rain. It was a good day to play Upwords, we scored for the first time ever and Jarrett won one game and then Nalani won the next one.
My right arm is still totally useless and typing this is causing my left one to ache even more severely. I am having difficulty in holding a cup to drink so have to use a straw, I hope that my right arm will mend quickly, last time it had improved by night time so I am being positive and hoping that it will heal as quickly this time.
The NRL Grand Final is on this afternoon, I wish the Tigers were there, they really deserved to be this year but I guess it was not meant to be. I know some people who would really love the Dragons to win but I don't particular like either team.
I wish to thank everyone that has been commenting on my Blog, I love hearing about your lives, having you encourage me and providing me with positive thoughts, every time I read them you give such hope.
Friday, October 1, 2010
A PAINFUL LEFT WRIST AND SHOPPING AT DFO
30th September and 1st October 2010
Another month has slipped by so rapidly, before we know it we will be into the Year 2011. September ended with me being in terrible pain in my left wrist and to my disappointment it has not improved for the first day of October.
I was kept awake finding it difficult to get a comfortable position to have my wrist without it causing dreadful throbbing pain up into my arm. Mum used massage, heat, elevation and those good old pain killers to try to relieve it for me, eventually something worked and I was able to gain a little sleep but before I knew it morning was upon us and the sun was streaming in the window.
We had a quiet day on Thursday and as I was still suffering from pain we could not really go out and do too much. I was able to do some of my physiotherapy exercises but my wrist has stopped me from making any progress now with my rollator, I can't put weight through it or my right ankle this is so frustrating, how am I supposed to go forwards when these things occur that set me backwards?
Fiona from the Parish paid a visit which was lovely, I find trying to go to Church every week difficult as we go at night time and by then I am just too fatigued and sore to go, perhaps when daylight savings and the weather really warms up, I will be able to find the strength to go more often. We said Mass and I used a verse that Sammy who has been writing to me, wrote in a letter, it was Proverbs 3:5-6 - Trust in the Lord with all your heart, and lean not on your own understanding. In all ways acknowledge him and he will make your path straight. We then said some prayers and had communion. I think that my belief that Jesus is with me stepping each step that I take helps me on some days, if he is there he will look after me even when my path may seem difficult and hard to bear.
We called Nana and Pop to have a chat, it was lovely to talk to them, I thought our weather was not the best but they have had so much rain up there, although it is good for the garden it is eroding the beautiful beaches.
I played Upwords and then we watched the Legendary Journey's of Hercules, it was then time for running training, the wind had really turned southerly and chilly so we watched Jarrett do his training from the car, he did extremely well and was able to try practising his new techniques to help his Vocal Chord Dysfunction, he said it was a little tricky but as time goes by he will be able to master it while he is running at an intense pace.
My wrist was not improving, it was aching still and my right knee and ankle had also become worse than they were earlier in the day. We still do not know exactly what is happening with appointments and tests that the doctors wanted me back in Sydney for from 11th October, I guess we will eventually be informed.
Another night of disturbed sleep from pain and being woken by Cosima licking my head with her large, pink sandpaper tongue. When you don't have much hair which I still don't, most of my hair is at the back, the sides are extremely bare unfortunately and when she licks it is the most unusual feeling.
An overcast first day of October greeted me this morning however the clouds disappeared and the sun shone through for a pleasant Spring Day. My wrist was still painful and each time I try to use it, it is so weak I am dropping things, my right ankle was also in pain this morning and it hurt when I attempted my physiotherapy exercises. I was still unable to do any practise with my rollator as my wrist has no strength and my ankle was too painful. It is like walking a path and coming to an enormous mountain that you can't go over, under or around you just have to try to work your way through it and that takes time.
I played Upwords and then we decided to go out to Fyshwick to DFO just to get out of the house and also to see if there was anything there we could buy for Mum's Birthday. We did not see anything for Mum but Nalani got a bargain on a couple of tee shirts and a CD , I got some pretty pink flower hair clips and a gift for a friends Birthday. Just being at the shop walking around and I can't even walk, I am being pushed tired me so much and I found that sitting in the wheelchair with my leg down my right ankle swelled dreadfully and was then even more painful, on the trip home I fell asleep in the car.
In the mail I received my next MRI appointment which is on 6th December, so it looks like I will be in Sydney the first week in December, earlier I had been told by my medical team that the MRI would probably be done in January unless there was something to be concerned about. We did not even expect to receive this appointment, I could not believe what time it is at either, 6.20pm!
My Dad had some spectacular news this week, he applied for a different job, one that he is hoping will give him more time to spend with the family as well as doing the type of work he loves to do, anyway he found out that he was successful and will be starting his new job on 4th November, he is going to be the Grounds and Facilities Manager at the two campuses of the School. He has been working at the Race Course for 26 years, he knows there like the back of his hand, it was a difficult decision, but he feels confident that he will be able to use his fantastic skills in his new job to be a true asset to the School.
I played the Nintendo DS Game Are you Smarter than a Fifth Grader and I found out that I was, wow, when our Prime Minister went on the show, she was not even smarter than a fifth grader, so that made me feel quite proud of myself, I did have a little help from Nalani though so I guess we are both smarter than a fifth grader.
This is from the Foot Prints in the Sand verse, so many people love this and have mentioned it to me throughout my journey this is a part that really strikes a chord with me, especially at this present moment - "I love you and would never leave you, during your times of trial and suffering when you see only one set of footprints it was then that I carried you".
Another month has slipped by so rapidly, before we know it we will be into the Year 2011. September ended with me being in terrible pain in my left wrist and to my disappointment it has not improved for the first day of October.
I was kept awake finding it difficult to get a comfortable position to have my wrist without it causing dreadful throbbing pain up into my arm. Mum used massage, heat, elevation and those good old pain killers to try to relieve it for me, eventually something worked and I was able to gain a little sleep but before I knew it morning was upon us and the sun was streaming in the window.
We had a quiet day on Thursday and as I was still suffering from pain we could not really go out and do too much. I was able to do some of my physiotherapy exercises but my wrist has stopped me from making any progress now with my rollator, I can't put weight through it or my right ankle this is so frustrating, how am I supposed to go forwards when these things occur that set me backwards?
Fiona from the Parish paid a visit which was lovely, I find trying to go to Church every week difficult as we go at night time and by then I am just too fatigued and sore to go, perhaps when daylight savings and the weather really warms up, I will be able to find the strength to go more often. We said Mass and I used a verse that Sammy who has been writing to me, wrote in a letter, it was Proverbs 3:5-6 - Trust in the Lord with all your heart, and lean not on your own understanding. In all ways acknowledge him and he will make your path straight. We then said some prayers and had communion. I think that my belief that Jesus is with me stepping each step that I take helps me on some days, if he is there he will look after me even when my path may seem difficult and hard to bear.
We called Nana and Pop to have a chat, it was lovely to talk to them, I thought our weather was not the best but they have had so much rain up there, although it is good for the garden it is eroding the beautiful beaches.
I played Upwords and then we watched the Legendary Journey's of Hercules, it was then time for running training, the wind had really turned southerly and chilly so we watched Jarrett do his training from the car, he did extremely well and was able to try practising his new techniques to help his Vocal Chord Dysfunction, he said it was a little tricky but as time goes by he will be able to master it while he is running at an intense pace.
My wrist was not improving, it was aching still and my right knee and ankle had also become worse than they were earlier in the day. We still do not know exactly what is happening with appointments and tests that the doctors wanted me back in Sydney for from 11th October, I guess we will eventually be informed.
Another night of disturbed sleep from pain and being woken by Cosima licking my head with her large, pink sandpaper tongue. When you don't have much hair which I still don't, most of my hair is at the back, the sides are extremely bare unfortunately and when she licks it is the most unusual feeling.
An overcast first day of October greeted me this morning however the clouds disappeared and the sun shone through for a pleasant Spring Day. My wrist was still painful and each time I try to use it, it is so weak I am dropping things, my right ankle was also in pain this morning and it hurt when I attempted my physiotherapy exercises. I was still unable to do any practise with my rollator as my wrist has no strength and my ankle was too painful. It is like walking a path and coming to an enormous mountain that you can't go over, under or around you just have to try to work your way through it and that takes time.
I played Upwords and then we decided to go out to Fyshwick to DFO just to get out of the house and also to see if there was anything there we could buy for Mum's Birthday. We did not see anything for Mum but Nalani got a bargain on a couple of tee shirts and a CD , I got some pretty pink flower hair clips and a gift for a friends Birthday. Just being at the shop walking around and I can't even walk, I am being pushed tired me so much and I found that sitting in the wheelchair with my leg down my right ankle swelled dreadfully and was then even more painful, on the trip home I fell asleep in the car.
In the mail I received my next MRI appointment which is on 6th December, so it looks like I will be in Sydney the first week in December, earlier I had been told by my medical team that the MRI would probably be done in January unless there was something to be concerned about. We did not even expect to receive this appointment, I could not believe what time it is at either, 6.20pm!
My Dad had some spectacular news this week, he applied for a different job, one that he is hoping will give him more time to spend with the family as well as doing the type of work he loves to do, anyway he found out that he was successful and will be starting his new job on 4th November, he is going to be the Grounds and Facilities Manager at the two campuses of the School. He has been working at the Race Course for 26 years, he knows there like the back of his hand, it was a difficult decision, but he feels confident that he will be able to use his fantastic skills in his new job to be a true asset to the School.
I played the Nintendo DS Game Are you Smarter than a Fifth Grader and I found out that I was, wow, when our Prime Minister went on the show, she was not even smarter than a fifth grader, so that made me feel quite proud of myself, I did have a little help from Nalani though so I guess we are both smarter than a fifth grader.
This is from the Foot Prints in the Sand verse, so many people love this and have mentioned it to me throughout my journey this is a part that really strikes a chord with me, especially at this present moment - "I love you and would never leave you, during your times of trial and suffering when you see only one set of footprints it was then that I carried you".
Wednesday, September 29, 2010
FAMILY AND COMMUNITY PUBLIC HOLIDAY, PHYSIOTHERAPY, JARRETT'S SPEECH PATHOLOGIST AND A PAINFUL WEDNESDAY
27th to 29th September 2010
As Canberra has seen another dip in temperature I sit typing this entry trying to distract myself from my acute pain, I guess the change in weather has caused it, my right ankle, knee and hip and so tender and my knee and ankle are swelling as if they were a balloon been filled with a breath of air.
Monday in Canberra was a public holiday for Family and Community Day, families took the opportunity to spend time outdoors together in the splendid sunshine. Dad had to work unfortunately so we did not get to have the day as a family.
Nalani was extremely excited because she was going to Tuggeranong to the Sanity Store for a meet and greet with Short Stack, where she waited in a line for over an hour, finally getting to see Shaun, Bradie and Andy who are the members of Short Stack, she had their new Planets CD signed and had a photograph taken with them which is now her wallpaper on her computer screen.
While Nalani was on her marvellous adventure Jarrett and I played a game of chess which Jarrett won, then Mum, Jarrett and I went to the school oval and played a game of cricket, we all had turns at batting, bowling as well as fielding although fielding for me is quite difficult, you can't move a wheelchair around on the oval very well and certainly can't go for a diving catch, with a somersault at the end like Jarrett does. We had a terrific time, except a fierce wind came up and the ball was being blown around everywhere so we decided to call it quits.
We played Upwords when we came home, then went for a walk to the Gungahlin Town Centre for some milk, when we were coming back I had another seizure, we were all talking and then the next thing I knew Mum and Jarrett were lightly shaking me and asking me if I was okay, apparently my head had dropped when I was being pushed in the wheelchair, I felt really fatigued and had the pins and needles through my right hand and arm again, these lasted for a few hours afterwards.
In the evening as I was playing my Nintendo DS I developed the most dreadful stomach cramps which made me feel really ill, I went to bed with a heat pack on my stomach, as you can imagine I woke throughout the night with the pain, perhaps it was from something I ate, if I eat too much cheese or eggs I find that I suffer from these type of stomach cramps, we had had a delicious baked macaroni cheese for dinner, it had lots of cheese, cream and eggs in it so they must have been too much for my stomach. This is an issue that the doctors are still investigating and have no answers for me as yet, perhaps it is from the chemotherapy or another medical condition that has appeared.
We had a funniest home video moment although it wasn't really funny until afterwards at the time it was actually a little frighening especially for Mum. We have a sandstone coffee table with a thick rectangular piece of glass that sits on top held on with suction caps. Mum was bringing a kit kat chocolate to me and she misjudged where the edge of the table was, she banged her knee into it, fell, as she fell she knocked the glass with her arm and it flipped which was quite terrifying as it is so large and thick, the tissue box and coasters went flying and the glass landed on Mum's back. Mum was not injured, just a little bruise on her back and knee and a little embarrassed, which is a miracle really, it was just the most freakish incident. When we knew that Mum was actually fine we all burst out laughing even Mum, then Jarrett decided to do replays of the event and that made us laugh even more.
Tuesday I still had the pains in my stomach, panadeine and heat packs were not helping relieve it, I guess though having the stomach pain took my mind off my knee and ankle pain for a while which was still there but the stomach pain was much worse. As the morning progressed I think the medication kicked in and the pain dissipated slightly which was a relief as I had physiotherapy.
Rhiannon did some work on my ankle and knee then while I was holding onto both her hands I had to practise some walking, I had to walk around three cones, this is to try to help my balance. My ankle was extremely painful while I was doing it although I was not putting full weight on it as it still has not healed properly yet from my fall in Sydney at physiotherapy, because I want to progress I pushed through the pain, I think when you really want some improvement you find that inner strength. However when we got home I paid for it, my ankle had swelled and was throbbing with pain, I used ice to assist with the swelling but had to wait until it was time for my next pain medication.
In the afternoon it was Jarrett's appointment with the Speech Pathologist, it was an hour appointment, she said he does have vocal chord dysfunction which is the common American term for it but in Australia it is also known as Paradoxical Vocal Chord Movement (PVCM), this means that his vocal chord randomly closes instead of opens when he is breathing during his running. We were shown a model of a throat and vocal chord and she explained it all, it was really interesting. He then had to do some exercises which closed off his vocal chord and Mum and I got to do them too so he wouldn't feel awkward. Then we were given different exercises to help open them up again. It was incredible how it felt so different when they were opened up, I can now understand how frightening it must have been for Jarrett to have it happen. We were told that no one can actually die from having it happen but you can have a lack of oxygen because of it and pass out. He has some exercises to practise every single day and ones to practise when he is running, he has to find out which ones work best for him. Within a month he should have good control over the condition and hopefully will not have such a severe attack as he did at Nationals ever again but if he does he has techniques he can use to assist and it will not stop him from running which was the most important issue for him. By practising his exercises everyday it will most likely help him to be a better runner and could also reduce his reliance on his asthma medication. He has to report back to the speech pathologist in a month and then she will decide whether to review him then or wait a little longer. I wish that my pain, fatigue and seizures could be fixed as easily as what Jarrett's problem can be. He does have to be dedicated to doing the exercises every day though or it will take longer to fix, he will have to do these for the rest of his life.
Tass, my number one salesman came and visited last night, he brought a magazine called Country Style to give to me, a reviewer called Annabel had written a review on my book in it, she said that my book is written with clarity and precision and is candid and uninhibited and is a brilliant guide for patients and their families and friends and she hopes that it is chosen by High Schools as a study text. When we study text at school sometimes they are rather boring, I hope that if my book was a study text at school that the students reading it would find it inspiring and interesting.
A southerly change engulfed Canberra late yesterday and as a result my bones and joints suffered, my whole right side of my body ached and my left knee and hand were also painful. Then during the night my head throbbed where my two scars from surgery are, this has not occurred in a long time, even to lie on either of them was like placing my head on a pillow of nails. A lack of sleep made me feel nauseous this morning, even my cup of tea did not sit very well on my weakened stomach. I tried to do my physiotherapy exercises and ended up in tears because it absolutely hurt to do them, how frustrating, a change in weather caused this many difficulties.
Pain killers offer some relief but it is dreadful to have to live on them every single day, but then again compared to the toxic drugs I had to endure for my chemotherapy I guess they are nothing. I have spent today quietly at home trying to find ways to distract myself from my constant pain. It is Tinkerbelle's Birthday on 14th October, she will turn one and I decided to make her a rainbow pom pom to play with. We watched a comedy movie, a good laugh is always good medicine and relaxing can often assist pain, I even try imagery, where I try to visualise a beautiful place, a rainforest with trickling water, fresh, moist air and wildlife singing their sweet harmonies, but then the pain wins through and takes the vision away.
I have been asked by an extraordinary lady called Christine who is working on a project called Australian Inspiration to provide a couple of my quotes for a book that she is putting together as well as a register in the form of a website which is to be launched on Australia Day 2011, the register will celebrate the collective voice and spirit of Australia. I am so very excited at the prospect of assisting her in her project, she has already used the title of my book as one of her favourite quotes. She is funding this project as a gift to the Nation and I think that is a phenomenal thing to do.
'Pain may wish to destroy my spirit but I have a greater strength from within and that is courage and hope'
As Canberra has seen another dip in temperature I sit typing this entry trying to distract myself from my acute pain, I guess the change in weather has caused it, my right ankle, knee and hip and so tender and my knee and ankle are swelling as if they were a balloon been filled with a breath of air.
Monday in Canberra was a public holiday for Family and Community Day, families took the opportunity to spend time outdoors together in the splendid sunshine. Dad had to work unfortunately so we did not get to have the day as a family.
Nalani was extremely excited because she was going to Tuggeranong to the Sanity Store for a meet and greet with Short Stack, where she waited in a line for over an hour, finally getting to see Shaun, Bradie and Andy who are the members of Short Stack, she had their new Planets CD signed and had a photograph taken with them which is now her wallpaper on her computer screen.
While Nalani was on her marvellous adventure Jarrett and I played a game of chess which Jarrett won, then Mum, Jarrett and I went to the school oval and played a game of cricket, we all had turns at batting, bowling as well as fielding although fielding for me is quite difficult, you can't move a wheelchair around on the oval very well and certainly can't go for a diving catch, with a somersault at the end like Jarrett does. We had a terrific time, except a fierce wind came up and the ball was being blown around everywhere so we decided to call it quits.
We played Upwords when we came home, then went for a walk to the Gungahlin Town Centre for some milk, when we were coming back I had another seizure, we were all talking and then the next thing I knew Mum and Jarrett were lightly shaking me and asking me if I was okay, apparently my head had dropped when I was being pushed in the wheelchair, I felt really fatigued and had the pins and needles through my right hand and arm again, these lasted for a few hours afterwards.
In the evening as I was playing my Nintendo DS I developed the most dreadful stomach cramps which made me feel really ill, I went to bed with a heat pack on my stomach, as you can imagine I woke throughout the night with the pain, perhaps it was from something I ate, if I eat too much cheese or eggs I find that I suffer from these type of stomach cramps, we had had a delicious baked macaroni cheese for dinner, it had lots of cheese, cream and eggs in it so they must have been too much for my stomach. This is an issue that the doctors are still investigating and have no answers for me as yet, perhaps it is from the chemotherapy or another medical condition that has appeared.
We had a funniest home video moment although it wasn't really funny until afterwards at the time it was actually a little frighening especially for Mum. We have a sandstone coffee table with a thick rectangular piece of glass that sits on top held on with suction caps. Mum was bringing a kit kat chocolate to me and she misjudged where the edge of the table was, she banged her knee into it, fell, as she fell she knocked the glass with her arm and it flipped which was quite terrifying as it is so large and thick, the tissue box and coasters went flying and the glass landed on Mum's back. Mum was not injured, just a little bruise on her back and knee and a little embarrassed, which is a miracle really, it was just the most freakish incident. When we knew that Mum was actually fine we all burst out laughing even Mum, then Jarrett decided to do replays of the event and that made us laugh even more.
Tuesday I still had the pains in my stomach, panadeine and heat packs were not helping relieve it, I guess though having the stomach pain took my mind off my knee and ankle pain for a while which was still there but the stomach pain was much worse. As the morning progressed I think the medication kicked in and the pain dissipated slightly which was a relief as I had physiotherapy.
Rhiannon did some work on my ankle and knee then while I was holding onto both her hands I had to practise some walking, I had to walk around three cones, this is to try to help my balance. My ankle was extremely painful while I was doing it although I was not putting full weight on it as it still has not healed properly yet from my fall in Sydney at physiotherapy, because I want to progress I pushed through the pain, I think when you really want some improvement you find that inner strength. However when we got home I paid for it, my ankle had swelled and was throbbing with pain, I used ice to assist with the swelling but had to wait until it was time for my next pain medication.
In the afternoon it was Jarrett's appointment with the Speech Pathologist, it was an hour appointment, she said he does have vocal chord dysfunction which is the common American term for it but in Australia it is also known as Paradoxical Vocal Chord Movement (PVCM), this means that his vocal chord randomly closes instead of opens when he is breathing during his running. We were shown a model of a throat and vocal chord and she explained it all, it was really interesting. He then had to do some exercises which closed off his vocal chord and Mum and I got to do them too so he wouldn't feel awkward. Then we were given different exercises to help open them up again. It was incredible how it felt so different when they were opened up, I can now understand how frightening it must have been for Jarrett to have it happen. We were told that no one can actually die from having it happen but you can have a lack of oxygen because of it and pass out. He has some exercises to practise every single day and ones to practise when he is running, he has to find out which ones work best for him. Within a month he should have good control over the condition and hopefully will not have such a severe attack as he did at Nationals ever again but if he does he has techniques he can use to assist and it will not stop him from running which was the most important issue for him. By practising his exercises everyday it will most likely help him to be a better runner and could also reduce his reliance on his asthma medication. He has to report back to the speech pathologist in a month and then she will decide whether to review him then or wait a little longer. I wish that my pain, fatigue and seizures could be fixed as easily as what Jarrett's problem can be. He does have to be dedicated to doing the exercises every day though or it will take longer to fix, he will have to do these for the rest of his life.
Tass, my number one salesman came and visited last night, he brought a magazine called Country Style to give to me, a reviewer called Annabel had written a review on my book in it, she said that my book is written with clarity and precision and is candid and uninhibited and is a brilliant guide for patients and their families and friends and she hopes that it is chosen by High Schools as a study text. When we study text at school sometimes they are rather boring, I hope that if my book was a study text at school that the students reading it would find it inspiring and interesting.
A southerly change engulfed Canberra late yesterday and as a result my bones and joints suffered, my whole right side of my body ached and my left knee and hand were also painful. Then during the night my head throbbed where my two scars from surgery are, this has not occurred in a long time, even to lie on either of them was like placing my head on a pillow of nails. A lack of sleep made me feel nauseous this morning, even my cup of tea did not sit very well on my weakened stomach. I tried to do my physiotherapy exercises and ended up in tears because it absolutely hurt to do them, how frustrating, a change in weather caused this many difficulties.
Pain killers offer some relief but it is dreadful to have to live on them every single day, but then again compared to the toxic drugs I had to endure for my chemotherapy I guess they are nothing. I have spent today quietly at home trying to find ways to distract myself from my constant pain. It is Tinkerbelle's Birthday on 14th October, she will turn one and I decided to make her a rainbow pom pom to play with. We watched a comedy movie, a good laugh is always good medicine and relaxing can often assist pain, I even try imagery, where I try to visualise a beautiful place, a rainforest with trickling water, fresh, moist air and wildlife singing their sweet harmonies, but then the pain wins through and takes the vision away.
I have been asked by an extraordinary lady called Christine who is working on a project called Australian Inspiration to provide a couple of my quotes for a book that she is putting together as well as a register in the form of a website which is to be launched on Australia Day 2011, the register will celebrate the collective voice and spirit of Australia. I am so very excited at the prospect of assisting her in her project, she has already used the title of my book as one of her favourite quotes. She is funding this project as a gift to the Nation and I think that is a phenomenal thing to do.
'Pain may wish to destroy my spirit but I have a greater strength from within and that is courage and hope'
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