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!
Friday, 11 November 2011
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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