Tuesday, 13 December 2011
Memories are made of this......
We live in a lovely quiet street with a view across Toowoomba to the North. My room is now on the ground level so I don't see quite as much of the wonderful vista that I once saw from my bedroom upstairs. However my new room is on the north eastern corner of the house with a large picture window behind me and full length glass doors beside me. Positioned so that I can see out the doorway into the family room and kitchen, I also have a beautiful view of our front garden including a fragrant rose garden. With 58 rose bushes and 30 gerbera plants I can pretty much tell you which new bud has started to open each day. With all the recent rain there has been a mass of new buds and with each bloom a beautiful fragrance. As the fragrance permeates the air tantilizing my senses distant memories are triggered.
One very special memory is that of my beautiful Gran who wrote to me every week when I was at boarding school. I always knew the letter was from Gran before I saw the handwriting....the rose scent of the paper all her letters were written on, reached my senses and immediately I would be homesick for my family.
Other memories evoked as I look outside in the early hours of the morning remind me of wonderful family fishing trips! Strange you may think, however very true. A few mornings ago the sun had not risen above the horizon but it had cast the first light into the morning darkness. The wonderful morning scents and the still quietness reminded me of waking in the early morning in a camp down by the river. The only sounds breaking the silence were the fish jumping out of the water, the very faint rustle of leaves falling to the ground or the lizard hurriedly moving from grass tuft to tuft!
The birds still hadn't started their morning trill and I would lie on my swag daydreaming, not realizing these special moments would become future memories. Dad would quietly rise and head off up or downstream to run the hand lines as mum would get the campfire going, to ensure the old fuel drum filled with creek water would be hot enough for our morning wash.
Soon the birds were singing their morning melodies and the sticks on the campfire would crackle as the flames leapt to life after laying dormant in the coals overnight. Mum too would soon head off to run the lines while I remained at the camp reading and my brother and sister slept.
Oh that has just reminded me of an incident that happened on one of our fishing trips when my brother was allowed to take along his daisy air rifle that Uncle Jack bought him. This particular day mum and dad went off to run the lines, Brother John (as I affectionately call him) went off through the bush with his rifle and my sister and I remained playing at the campsite. Suddenly I felt an incredible sting on my cheek, I had no idea what had hit me until I heard my mother yelling at Brother John. Dad took the rifle out of his hands and told him he wouldn't be getting it back! Turns out he thought I was good target practice!. I still have the scar on my cheek, albeit very faint! Although I often laugh at that memory it does remind me of how dangerous our childhood activities may have been.
Back then our fishing trips would produce, yellow belly, jewfish and even cod. These days the fishing trips are less productive. As I look out into the clear blue skies my memory takes me back to the lead up to our wonderful fishing trips. The weekend before we would pile in the car loaded with dragnet; five gallon drums with holes in the bottom, rope tied to the handle and chunk of raw meat tied to the inside bottom; cotton lines and small pieces of raw meat. Dad would head out of town to a dam and here we would spend the afternoon catching crayfish to use as fishing bait. This was so much fun.
We would dangle our cotton lines in the muddy dam water hoping the crays would nibble on the raw meat so that we could draw them out of the water and scoop them up in our nets. Dad would toss the drums into the dam and after awhile draw them back in and as the water ran out the holes we excitedly counted dad's catch. Sometimes, dad would send Brother John into the dam with the net while he or mum walked the bank with the other end of the net. As the net came up out of the water onto the bank, we would rush in to collect the crays and toss them into the wet potato bag, as this was to be their home for the next week. The bag would have grass tossed into it and then be placed in the laundry tub where it would be kept wet until our trip the following weekend.
Another fun activity was helping mum and dad dig up the garden or chook pen in search of big fat garden worms. In recent times, as we made gardens in our Toowoomba homes, we would find heaps of big fat juicy garden worms and invariably someone would say..."oh Poppy Bill would love these worms for fishing!"
I have so much to be grateful for. I thank God for my wonderful childhood. The amazing memories, the love of wonderful parents and family and now a beautiful garden to wheel around or to look at from my bed and allow so many wonderful memories take me back to my childhood and the family I love so dearly.
What do you have to be thankful for? Do you have wonderful memories? Are you creating memories for your family?
One very special memory is that of my beautiful Gran who wrote to me every week when I was at boarding school. I always knew the letter was from Gran before I saw the handwriting....the rose scent of the paper all her letters were written on, reached my senses and immediately I would be homesick for my family.
Other memories evoked as I look outside in the early hours of the morning remind me of wonderful family fishing trips! Strange you may think, however very true. A few mornings ago the sun had not risen above the horizon but it had cast the first light into the morning darkness. The wonderful morning scents and the still quietness reminded me of waking in the early morning in a camp down by the river. The only sounds breaking the silence were the fish jumping out of the water, the very faint rustle of leaves falling to the ground or the lizard hurriedly moving from grass tuft to tuft!
The birds still hadn't started their morning trill and I would lie on my swag daydreaming, not realizing these special moments would become future memories. Dad would quietly rise and head off up or downstream to run the hand lines as mum would get the campfire going, to ensure the old fuel drum filled with creek water would be hot enough for our morning wash.
Soon the birds were singing their morning melodies and the sticks on the campfire would crackle as the flames leapt to life after laying dormant in the coals overnight. Mum too would soon head off to run the lines while I remained at the camp reading and my brother and sister slept.
Oh that has just reminded me of an incident that happened on one of our fishing trips when my brother was allowed to take along his daisy air rifle that Uncle Jack bought him. This particular day mum and dad went off to run the lines, Brother John (as I affectionately call him) went off through the bush with his rifle and my sister and I remained playing at the campsite. Suddenly I felt an incredible sting on my cheek, I had no idea what had hit me until I heard my mother yelling at Brother John. Dad took the rifle out of his hands and told him he wouldn't be getting it back! Turns out he thought I was good target practice!. I still have the scar on my cheek, albeit very faint! Although I often laugh at that memory it does remind me of how dangerous our childhood activities may have been.
Back then our fishing trips would produce, yellow belly, jewfish and even cod. These days the fishing trips are less productive. As I look out into the clear blue skies my memory takes me back to the lead up to our wonderful fishing trips. The weekend before we would pile in the car loaded with dragnet; five gallon drums with holes in the bottom, rope tied to the handle and chunk of raw meat tied to the inside bottom; cotton lines and small pieces of raw meat. Dad would head out of town to a dam and here we would spend the afternoon catching crayfish to use as fishing bait. This was so much fun.
We would dangle our cotton lines in the muddy dam water hoping the crays would nibble on the raw meat so that we could draw them out of the water and scoop them up in our nets. Dad would toss the drums into the dam and after awhile draw them back in and as the water ran out the holes we excitedly counted dad's catch. Sometimes, dad would send Brother John into the dam with the net while he or mum walked the bank with the other end of the net. As the net came up out of the water onto the bank, we would rush in to collect the crays and toss them into the wet potato bag, as this was to be their home for the next week. The bag would have grass tossed into it and then be placed in the laundry tub where it would be kept wet until our trip the following weekend.
Another fun activity was helping mum and dad dig up the garden or chook pen in search of big fat garden worms. In recent times, as we made gardens in our Toowoomba homes, we would find heaps of big fat juicy garden worms and invariably someone would say..."oh Poppy Bill would love these worms for fishing!"
I have so much to be grateful for. I thank God for my wonderful childhood. The amazing memories, the love of wonderful parents and family and now a beautiful garden to wheel around or to look at from my bed and allow so many wonderful memories take me back to my childhood and the family I love so dearly.
What do you have to be thankful for? Do you have wonderful memories? Are you creating memories for your family?
Monday, 5 December 2011
Changes, Challenges and Chuckles!
So life continues, diagnosis with what everyone classes a killer disease, what do I do? Do I accept the prognosis, the sentence placed upon me or do I fight on? To my mind, knowledge is power and I need a lot of power. The Internet became my closest friend, I searched every possible page for all the information I could find, but there was so much negative out there and I didn't want that, so I changed my tactics.
I decided I was going to research what I needed should the disease progress, put everything into place in case the day came when I would need a wheelchair and more! I saw a speech pathologist, psychologist, nutritionist and surgeon. After checking out the medical aspect, I then checked into the legal matters as well as researching medical aids and equipment.
During this time I commenced the "intragam" infusions! Five months on and I feel, although the disease has progressed, my overall health is good...so I will continue while Dr S feels it is worth doing so.
August came quickly and I took delivery of my wheelchairs! Yep plural....I have my regular wheels for indoor/outdoor and my truck for the beach and bush!
So let's lighten these blogs....my first outing by myself in my wheelchair. I spent the morning at my Friday Ladies Cafe at Citilife then decided to wheel down to the College to say hello to my past work colleagues.
Visit completed I was going to attempt to hit the shops, but first the bathroom....well what a laugh! My friend came with me to open doors....I was able to get myself out of the wheelchair and walk but found the disabled toilet blocked with boxes and other things. No worries normal toilet will do! All good until time to get myself off...oh these toilets are very low! Well in my effort to get up I ended up on the floor and then had visions of the little room filled with men trying to lift me up! No chance, I desperately did everything I could to get my jeans up and then crawled out to the washroom. My friend wanted to help me up but she is rather tiny and not only am I rather large, I am a dead weight!
Trying not to laugh too hard I asked her to find a couple of men to help me up. Well that was it I couldn't help but laugh she found the shortest and the tallest guys around and I thought what will happen now? Ummm well, whilst dangling lopsided we called for more aid to put my feet on the floor, with that Ps P came to the rescue, sorted the chair and my feet and I was soon back in the seat!
"oh how embarrassing!" I exclaimed. "Well aren't you glad you were with friends?" asked Mr W! "More pleased that I got my strides up'" I laughed. "Yes we were worried about that!" he grinned and with that I laughed harder and made a mental note...there is always someone worse off than me....in this case if I hadn't been able to get my strides up........? Those poor guys! ROFL....lol!
I decided I was going to research what I needed should the disease progress, put everything into place in case the day came when I would need a wheelchair and more! I saw a speech pathologist, psychologist, nutritionist and surgeon. After checking out the medical aspect, I then checked into the legal matters as well as researching medical aids and equipment.
During this time I commenced the "intragam" infusions! Five months on and I feel, although the disease has progressed, my overall health is good...so I will continue while Dr S feels it is worth doing so.
August came quickly and I took delivery of my wheelchairs! Yep plural....I have my regular wheels for indoor/outdoor and my truck for the beach and bush!
So let's lighten these blogs....my first outing by myself in my wheelchair. I spent the morning at my Friday Ladies Cafe at Citilife then decided to wheel down to the College to say hello to my past work colleagues.
Visit completed I was going to attempt to hit the shops, but first the bathroom....well what a laugh! My friend came with me to open doors....I was able to get myself out of the wheelchair and walk but found the disabled toilet blocked with boxes and other things. No worries normal toilet will do! All good until time to get myself off...oh these toilets are very low! Well in my effort to get up I ended up on the floor and then had visions of the little room filled with men trying to lift me up! No chance, I desperately did everything I could to get my jeans up and then crawled out to the washroom. My friend wanted to help me up but she is rather tiny and not only am I rather large, I am a dead weight!
Trying not to laugh too hard I asked her to find a couple of men to help me up. Well that was it I couldn't help but laugh she found the shortest and the tallest guys around and I thought what will happen now? Ummm well, whilst dangling lopsided we called for more aid to put my feet on the floor, with that Ps P came to the rescue, sorted the chair and my feet and I was soon back in the seat!
"oh how embarrassing!" I exclaimed. "Well aren't you glad you were with friends?" asked Mr W! "More pleased that I got my strides up'" I laughed. "Yes we were worried about that!" he grinned and with that I laughed harder and made a mental note...there is always someone worse off than me....in this case if I hadn't been able to get my strides up........? Those poor guys! ROFL....lol!
Friday, 11 November 2011
D (Diagnosis) Day
13 July 2001
The day after....
Well here we are......diagnosis at last.
I haven't made any notes of late but it is time to put thought to paper. I saw Dr M in Brisbane 2 weeks ago and he referred me back to Dr S for further testing to confirm either Motor Neurone Disease or Multi-focal Motor Neuropathy. Over the past 2 weeks I have tried to avoid the idea that it maybe MND yet many times I found myself musing the fast progression of the muscle wasting and increased twitching. I found myself pleading with God - "don't let it be MND".
Monday I had a troubled sleep and found myself praising God for a miracle. Driving to Brisbane yesterday, as much as I preferred to receive a diagnosis of MMN, I seemed to be thinking how tough it must be for the Doctor to tell me I have MND and there is nothing they can do for me. Finally, we are in his room, Dr S examines me one more time; reads his notes; checks the MRI scans and eventually tells me,"well the scans are clear and we have talked about 2 possibilities. The tests I did on Saturday show a problem with the nervous system, the blood tests don't show any antibodies....what we are looking at here is Motor Neurone Disorder".
i hear Darryl's gasp as he tried not to cry. I felt the tears come to my eyes but I fought to hold them back...be strong...Lord now we are poised for a miracle. I vaguely remember speaking this out aloud at one stage and the Doctor agreed. He offered for me to have the immunogloblin treatment "intragam" to which a accepted. He then asked which local doctor will I be attending so that he can contact him to arrange for my healthcare team. After we asked a few more questions, unable to get any idea of a time frame, we left desperately trying to remain composed......
Outside my wonderful husband hugged me. All I wanted to do was get out of Brisbane, go home to our own secure world and pretend for awhile that everything was okay. That was not easy, so we pulled into mum's driveway and presented our biggest smiles....then my heart broke. My beautiful mum who has always been there for me had to listen to her second child tell her she has Motor Neurone Disease with a life expectancy of 27 months.
How cruel is this? Just 10 years ago my darling dad died with cancer; my only brother became a paraplegic as the result of a motorbike accident; now this beautiful lady has to face the prospect of her eldest daughter becoming a quadriplegic and probably dying a premature death.
Cruel...yes, but it's not what happens to you - It's how you handle it!
The day after....
Well here we are......diagnosis at last.
I haven't made any notes of late but it is time to put thought to paper. I saw Dr M in Brisbane 2 weeks ago and he referred me back to Dr S for further testing to confirm either Motor Neurone Disease or Multi-focal Motor Neuropathy. Over the past 2 weeks I have tried to avoid the idea that it maybe MND yet many times I found myself musing the fast progression of the muscle wasting and increased twitching. I found myself pleading with God - "don't let it be MND".
Monday I had a troubled sleep and found myself praising God for a miracle. Driving to Brisbane yesterday, as much as I preferred to receive a diagnosis of MMN, I seemed to be thinking how tough it must be for the Doctor to tell me I have MND and there is nothing they can do for me. Finally, we are in his room, Dr S examines me one more time; reads his notes; checks the MRI scans and eventually tells me,"well the scans are clear and we have talked about 2 possibilities. The tests I did on Saturday show a problem with the nervous system, the blood tests don't show any antibodies....what we are looking at here is Motor Neurone Disorder".
i hear Darryl's gasp as he tried not to cry. I felt the tears come to my eyes but I fought to hold them back...be strong...Lord now we are poised for a miracle. I vaguely remember speaking this out aloud at one stage and the Doctor agreed. He offered for me to have the immunogloblin treatment "intragam" to which a accepted. He then asked which local doctor will I be attending so that he can contact him to arrange for my healthcare team. After we asked a few more questions, unable to get any idea of a time frame, we left desperately trying to remain composed......
Outside my wonderful husband hugged me. All I wanted to do was get out of Brisbane, go home to our own secure world and pretend for awhile that everything was okay. That was not easy, so we pulled into mum's driveway and presented our biggest smiles....then my heart broke. My beautiful mum who has always been there for me had to listen to her second child tell her she has Motor Neurone Disease with a life expectancy of 27 months.
How cruel is this? Just 10 years ago my darling dad died with cancer; my only brother became a paraplegic as the result of a motorbike accident; now this beautiful lady has to face the prospect of her eldest daughter becoming a quadriplegic and probably dying a premature death.
Cruel...yes, but it's not what happens to you - It's how you handle it!
June to July.....closer
21 June 20011
Saw Dr L today, he has ruled out everything he can imagine that may be causing my issues and has given me a referral to see Dr M a neurologist. Dr L said both Dr M and Dr S are the best in their field. I am feeling so unwell, no strength in my whole body, I need to seek God more through this trying time..." it is when I am weak that I am strong" 2 Corinthians 12:9.
My amazing husband is so kind and caring. We have so much to do together. It will be great when I am well...very soon.
Benny boy will be here tonight and that will be great!
Saw Dr L today, he has ruled out everything he can imagine that may be causing my issues and has given me a referral to see Dr M a neurologist. Dr L said both Dr M and Dr S are the best in their field. I am feeling so unwell, no strength in my whole body, I need to seek God more through this trying time..." it is when I am weak that I am strong" 2 Corinthians 12:9.
My amazing husband is so kind and caring. We have so much to do together. It will be great when I am well...very soon.
Benny boy will be here tonight and that will be great!
Waiting through June
19 June 2011
.......I hope to talk to Adam later on Skype.
This morning I am not feeling so well. My head hurts, I feel nauseous and my legs arevery heavy. I didn't sleep well last night prob due to not taking my night meds as Dr P suggested I go without them this week to see if there is any change to my condition. I didn't go to church and I do miss it. I will go next week in the meantime I will listen to a podcast, do more reading and wait on the Lord. Each day I will do one more thing toward my Christian walk.
20 June 2011
Granny Rowe's anniversary
....not feeling so good but encouraged by reading the word. 1 John 4:7-19
Took photos of Princess and sent them to 'Poss'
.......I hope to talk to Adam later on Skype.
This morning I am not feeling so well. My head hurts, I feel nauseous and my legs arevery heavy. I didn't sleep well last night prob due to not taking my night meds as Dr P suggested I go without them this week to see if there is any change to my condition. I didn't go to church and I do miss it. I will go next week in the meantime I will listen to a podcast, do more reading and wait on the Lord. Each day I will do one more thing toward my Christian walk.
20 June 2011
Granny Rowe's anniversary
....not feeling so good but encouraged by reading the word. 1 John 4:7-19
Took photos of Princess and sent them to 'Poss'
Tuesday, 8 November 2011
The Story Starts
I am not one to be sick, however the past 29 months have been somewhat taxing. I was working as a Personal Assistant to the College Principal when in 2009 a critical incident occurred at our College. I was closely involved in this incident which traumatized the school community, staff and particularly many students. Fortunately, after a lot of counseling, most of us came through with a very different perspective on life and for many, an incredibly deeper relationship with God.
As 2011 commenced I was exhausted and wondered if I should continue in my role as Principals Personl Assistant. My exercising was non existent, I fatigued easily and could barely walk 20 meters as my calves were very sore. I just could not walk fast. This was not usual for me as I had always been fit. My weight was increasing and no amount of dieting helped there.
When I returned to work in January I was experiencing strange spasms in my right hand. At home I struggled to climb the stairs to our bedroom. Cursing my weight I had no idea my body was saying, "hey you, this is not normal!"
At the end of February 'Poss' was traveling to study in China and I was traveling to Ireland for my niece's wedding. A week before I left I fell out the door into our indoor pool room. Thinking it was because I tripped on something, I told my doctor about my hand and also that my calves were sore, but not that I stumbled.
In Ireland, my brother-in-law (Irish) took me sight seeing. I hoped no one would notice how slow I walked and continued to note to self.."I must lose weight!" Climbing stairs was an ordeal and Irish said, "come on, you have stairs at your place", "yes but they aren't as steep as these".
I was often late rising in the mornings due to my fatigue, however I determined to enjoy myself at the wedding. I did and I 'danced like no one was watching'. I am so happy I made the trip even though it was taxing. After the wedding, I flew to Edinburgh, in Scotland, where I enjoyed the sights, lights and even snow. Unfortunately the hotel lift was out of order and my room was on the 5th level. I didn't even have the strength to open the window after my debilitating climb up 5 levels and was rather embarrassed when it slid up so easily for the manager!
Exhausted, I ordered room service, ate dinner and slipped into a cosy sleep. Next morning, knowing I wouldn't be able to climb the stairs again I left my luggage with the concierge. After breakfast I travelled around the city in the bus. Noting a quaint alley of shops and being one who loves to browse, I disembarked to start my stroll...."big mistake! Huge!"....I felt like I was falling to the right as I walked..musing to myself, "...could almost think I have had a stroke", so I promptly returned to the hotel, caught a bus to the airport, flew to Dublin and then returned to Australia.
Back in Oz I attended my School Reunion and had a wonderful evening catching up with my school friends from 27 years ago. None of us had changed, we all ignored the increased waistlines, greying hair and shiny patches, life is too short to be worried about the aging process. Two days later I returned to work, but within a few hours I knew I would be going home.
What followed were visits to chiropractors, doctors, specialists and eventually I formally resigned my job. Thinking I only required a break, I agreed to help out with events as I was needed.
During the following months I tried to journal. I would start, then stop, not really completing my entries.
I will add this journalling to my blog as it will convey some of the emotion and frustration endured during my prediagnosis period. Back soon.
SusieQ
As 2011 commenced I was exhausted and wondered if I should continue in my role as Principals Personl Assistant. My exercising was non existent, I fatigued easily and could barely walk 20 meters as my calves were very sore. I just could not walk fast. This was not usual for me as I had always been fit. My weight was increasing and no amount of dieting helped there.
When I returned to work in January I was experiencing strange spasms in my right hand. At home I struggled to climb the stairs to our bedroom. Cursing my weight I had no idea my body was saying, "hey you, this is not normal!"
At the end of February 'Poss' was traveling to study in China and I was traveling to Ireland for my niece's wedding. A week before I left I fell out the door into our indoor pool room. Thinking it was because I tripped on something, I told my doctor about my hand and also that my calves were sore, but not that I stumbled.
In Ireland, my brother-in-law (Irish) took me sight seeing. I hoped no one would notice how slow I walked and continued to note to self.."I must lose weight!" Climbing stairs was an ordeal and Irish said, "come on, you have stairs at your place", "yes but they aren't as steep as these".
I was often late rising in the mornings due to my fatigue, however I determined to enjoy myself at the wedding. I did and I 'danced like no one was watching'. I am so happy I made the trip even though it was taxing. After the wedding, I flew to Edinburgh, in Scotland, where I enjoyed the sights, lights and even snow. Unfortunately the hotel lift was out of order and my room was on the 5th level. I didn't even have the strength to open the window after my debilitating climb up 5 levels and was rather embarrassed when it slid up so easily for the manager!
Exhausted, I ordered room service, ate dinner and slipped into a cosy sleep. Next morning, knowing I wouldn't be able to climb the stairs again I left my luggage with the concierge. After breakfast I travelled around the city in the bus. Noting a quaint alley of shops and being one who loves to browse, I disembarked to start my stroll...."big mistake! Huge!"....I felt like I was falling to the right as I walked..musing to myself, "...could almost think I have had a stroke", so I promptly returned to the hotel, caught a bus to the airport, flew to Dublin and then returned to Australia.
Back in Oz I attended my School Reunion and had a wonderful evening catching up with my school friends from 27 years ago. None of us had changed, we all ignored the increased waistlines, greying hair and shiny patches, life is too short to be worried about the aging process. Two days later I returned to work, but within a few hours I knew I would be going home.
What followed were visits to chiropractors, doctors, specialists and eventually I formally resigned my job. Thinking I only required a break, I agreed to help out with events as I was needed.
During the following months I tried to journal. I would start, then stop, not really completing my entries.
I will add this journalling to my blog as it will convey some of the emotion and frustration endured during my prediagnosis period. Back soon.
SusieQ
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