Hi my name is Michelle and I'm married to my husband Justin of 10years and have two beautiful boys Drew, nearly 8 and Brayden who is 5.
My health hasn't been good for 9 years now but, although it will never disappear, I am able to control it better.
Drew has Aspergers Syndrome and I hope to be able to share with others hints and information that my give insight or maybe even help others.
Brayden, my youngest has started at school this year and is in the Prep class. Prep in Queensland has taken over what we called Pre-school, up until this year pre-school was a part time thing that you do before your first year in year one. Now PREP is full time and is treated as the rest of the school. I suppose like you have Reception in SA.
Last but definitely not least, my hubby, Justin. Justin is my ROCK!. We met and fell in love at 14 and bought a house and settled into a normal happy life. He managed the Bi Lo supermarkets and we were transferred to Darwin from Adelaide. Lucky my family were up there, they were managing a caravan park. Within the first week up there we happily found out I was expecting.
Pregnancy definitely agreed with me and I shed 30 kilos while pregnant. In the last trimester I started to have Gallstone Attacks and was in and out of the Royal Darwin Hospital. The birth was extreme 28hours and the Doctors wanted to wait for me to recover from the birth before operating, again, I spent so much time in the Emergency Department. Then 7weeks after Drew was born I was admitted to hospital with Acute Pancreatitis, a stone from my Gaul Bladder was lodged into my Pancreatitis and I was in real trouble. They had to go in and find the stones, which turned out to be like small gravel. To cut a long long story short, they had to do numerous ops and only made things worse. Each time I was under I came out worse than the last.
In this time we moved back to SA and then after the birth of Brayden, moved to Whyalla in remote SA. I was put under a specialist who after more and more test diagnosed it with Chronic Pancreatitis, which I then had to accept that I had to live with IT! I was then prescribed pain killers they didn't help, they then put me on Endone, a short acting Opioid then, Oxycontin, a longer acting opioid. At this stage they had to keep increasing my dose, as my body got used to them and I had no pain relief. At this time Justin through work was moved back to Adelaide metro, to be closer to home and support.
Bi Lo weren't happy with Justin having to take time off to come and help me with Drew and Brayden. I had the support of my mate TJ, but there is only so much she could do, she had a new born herself. Then came the ultimatum, Bi Lo said Justin had to make a choice, Work or Family. Justin was fantastic, as scary as it was without having time to think, he said Family,at this moment he became my full time carer.
So here we were, lost the company house and company car and a good wage. This meant we had to move to the Daintree in Far North Queensland to be close to my parents and live in the park that they manage. Once up here the Depression and the pain got totally on top of me and the put me on MS Contin, The opioid Morphine, this was nasty, the hospital ended up refusing to admit me to Mossman Hospital.
I didn't know wear to turn. Justin was fantastic and never judged me or complained, he took over the role as Mr Mum as he became known as. He backed me and believed me through the darkest of dark moments.
I was at the end of my tether waiting for the Multidisciplinary Pain Clinic Appointment to come. 18months after moving to FNQ, Justin and I flew down to Brisbane for the long awaited appointment, I was so stressed after waiting for so long I finally had a chance to talk to someone. In this appointment, I was taken off of Morphine as such and put on Brupenorphine, a tablet which you put under your tongue, they were a like a synthetic morphine that your body didn't get used to, and you didn't have to keep increasing the dose. The withdrawal from the Morphine was shocking, I thought I was going to die. The doctor their said that I wouldn't have any symptoms, yeah right! it was terrible, sweats, shakes, nausea, to name just a few. Anyway, after the symptoms subsided, the pain relief was good the bad, it was a yo yo effect, it also depended on what I had eaten or drunk before or after the tablet as to how effective it was. The other medication they put me on at this appointment, was Gabapentin, this is an Epileptic drug that helps control seizes, but also is a good help in the use of pain control. So he prescribed this as well. They also talked about maybe changing my anti-depression medication to a tricyclic tablet, this is one of the older type of medication, as I had tried two other types for depression and found they didn't help much. They said that (Endep) as well as an antidepressant is also found to be of use with your pain receptors. Also I was put on a waiting list to attend a 2wk pain clinic, where you stay there and attend group sessions, but there waste be a 12month wait. We walked away felling that there was other options. With the Brupenorphine and Gabapentin and maybe in the future the Endep.
At the next appointment in Brisbane, we flew down wanting to maybe start the Endep as I needed something for the break through pain, this is pain that pushes you over the edge and you need to go to hospital. The specialist, prescribed a small dose of Endep, as I was taking the Zoloft, an Anti-depressant, which they hoped to keep going with both. Also, we made an action plan for if I had to go to hospital, before, if I want, they would want to give morphine through IV, with the Brupenorphine in my system Morphine would make me sick. So, he set a plan in place and they would give me Brupenorphine and Catamin.
The 2 week program mentioned at the first appointment was due to come up, which I asked about at the next Brisbane appointment. They booked me in for the end of October.
I had to come down from Cairns and stay in hospital, without my husband and Kids. It was so scary, something I imagine you would see in a movie. I arrived and we were taken up to the ward, where we were signed in and our medications were taken from us, we were seen by a barrage of doctors all asking the same question and having to go over the past that you would much rather put behind you. The doctors were from all different areas, from Mental Health, Psychiatrist and Psychologists, finding where you are at, to the Physiotherapist, Thai Chi, Water Aerobics Occupational Therapist and Nurses. They all did seminars, group and one on one sessions. By the end of the first day we were all emotional. That night the medications were all completely mucked up and we were treated like drug addicts, the lady next to me and myself, and the two blokes opposite us, we were left very upset and told that we should only talk to the doctors in the morning about our medication and that we had our chance and we would have to wait until the morning. The muck ups were pretty important. The next morning we were woken to find about seven doctors at the end of our beds, wanting to talk to us. This is the strangest feeling, you have about 4minutes to get out what you had to say and that was that, even then the doctors forget what you had said by the time they make their notes.
Okay so the start to the 2 weeks wasn't good and I lived with reflux for a week before getting my medications and when I did get them they gave the wrong mg dose, so again the problem stayed. I missed my family really bad, and talked heaps. Through the weeks programs the doctors changed my Brupenorphine Sublinugal (under tongue) to a weekly patch, called Norspan 20mg. The pain relief was so much more at a constant level, the problem with these is that they wouldn't stay on. They tried everything tapes, dressings bandages, this made me pretty anxious, the fact that I was only allocated one patch a week.
What a turning point that was...
I found myself dreading the patch change over day, I would stress at Justin to put it on properly or even where we would put it. Each week it would burn my skin where it was positioned, we were supposed to only apply it to the upper torso, I am by no means small and the patch would not stick to an area where the skin could stretch or flex. In the end I asked the doctor to prescribe a lesser dose as the patch would be smaller and I could place it on my arms. So this is where I was given a 10mg (half the size of the 20mg) and a 5mg (quarter the size of the 20mg). These were good as I put them on my wrists and wore a headband wrapped twice around my wrist.
I managed the 15mg really well and found myself thinking that, if I could do the 15mg what about the 10mg only. I found myself asking for the script for the 15mg and thinking that if I only had the 10mg patch to worry about, how would I go. By the end of the script I found that I was managing on the 10mg. So on the next visit to the doctor I told him that I only wanted the 10mg, he was proud, and so was I.
I found myself for the first time since I was a volunteer Ambulance Attendant, that I was proud of myself. I have never had a positive opinion of myself, so this was a real crazy notion.
I was more than ever spurred on to kick this medication, within the month script and a happy husband I reduced to the 5mg patch. So after going through a bit of a withdrawal I was down to the last step 5mg then nothing. Yeah Yahoo!!etc. My doctor said I shouldn't rush this but he wasn't about to stand in my way. Over the years of seeing my doctor he had said some crazy things, which I thought at the time as far out and stupid comments like, " you can beat the pain" or "you have the power to not let the pain control you" " it is your choice as to whether you have a good day or a bad", it is these and many more that I now look back on as not so far out and many have come true.
It is now Saturday before Mother's Day, and I feel, for the first time that I deserve to have this day, I never thought that I would be here writing my story openly and honestly, I am proud. My family mean the world to me. I control the pain, the pain will never control me again . On Monday of this week I was supposed to change my 5mg patch, I quiet knowingly left it on and took it off because it was falling off.
For the first time since June 2002 I HAVE NO OPIOID OR MORPHINE, as far as I am concerned I will never ever have any of those again.
Yes, I still battle the pain, it will never be gone, but I have learned to live with it. I still have lots of bad days, but I deal with them as they come. As well as the pain I suffer depression and I have a child, with Aspergers. None of my days are easy, but they are allot easier now I don't have opioid drugs, clouding my judgement.
My husband Justin as I was saying above, is still my carer, but, he has been starting up his own business, called "Mossman Computing @ Your Service. He works from home and on days where I'm not the best he stays home on others I might go with him, or I stay home. He has always been there for me and I will always be there for him. We have set up an office at home where we both work, I work on my jewellery and he on his computers. It is so great for us to have this time together and we help each other.
I don't look back on what we have been through and wish it was different. Everything happens for a reason and it has bought us as a family so much closer and Justin couldn't have still been working for Bi Lo, the Management and Hours were killing him. He is up here in a beautiful place and we have a business that is fantastic and suits our family situation. Justin is doing what he always wanted to do since he was in Primary School, a Computer Technician.
I am proud of my whole family for their support and helping us through the toughest of tough times,
Thanks for reading my life and I hope to write again soon
My health hasn't been good for 9 years now but, although it will never disappear, I am able to control it better.
Drew has Aspergers Syndrome and I hope to be able to share with others hints and information that my give insight or maybe even help others.
Brayden, my youngest has started at school this year and is in the Prep class. Prep in Queensland has taken over what we called Pre-school, up until this year pre-school was a part time thing that you do before your first year in year one. Now PREP is full time and is treated as the rest of the school. I suppose like you have Reception in SA.
Last but definitely not least, my hubby, Justin. Justin is my ROCK!. We met and fell in love at 14 and bought a house and settled into a normal happy life. He managed the Bi Lo supermarkets and we were transferred to Darwin from Adelaide. Lucky my family were up there, they were managing a caravan park. Within the first week up there we happily found out I was expecting.
Pregnancy definitely agreed with me and I shed 30 kilos while pregnant. In the last trimester I started to have Gallstone Attacks and was in and out of the Royal Darwin Hospital. The birth was extreme 28hours and the Doctors wanted to wait for me to recover from the birth before operating, again, I spent so much time in the Emergency Department. Then 7weeks after Drew was born I was admitted to hospital with Acute Pancreatitis, a stone from my Gaul Bladder was lodged into my Pancreatitis and I was in real trouble. They had to go in and find the stones, which turned out to be like small gravel. To cut a long long story short, they had to do numerous ops and only made things worse. Each time I was under I came out worse than the last.
In this time we moved back to SA and then after the birth of Brayden, moved to Whyalla in remote SA. I was put under a specialist who after more and more test diagnosed it with Chronic Pancreatitis, which I then had to accept that I had to live with IT! I was then prescribed pain killers they didn't help, they then put me on Endone, a short acting Opioid then, Oxycontin, a longer acting opioid. At this stage they had to keep increasing my dose, as my body got used to them and I had no pain relief. At this time Justin through work was moved back to Adelaide metro, to be closer to home and support.
Bi Lo weren't happy with Justin having to take time off to come and help me with Drew and Brayden. I had the support of my mate TJ, but there is only so much she could do, she had a new born herself. Then came the ultimatum, Bi Lo said Justin had to make a choice, Work or Family. Justin was fantastic, as scary as it was without having time to think, he said Family,at this moment he became my full time carer.
So here we were, lost the company house and company car and a good wage. This meant we had to move to the Daintree in Far North Queensland to be close to my parents and live in the park that they manage. Once up here the Depression and the pain got totally on top of me and the put me on MS Contin, The opioid Morphine, this was nasty, the hospital ended up refusing to admit me to Mossman Hospital.
I didn't know wear to turn. Justin was fantastic and never judged me or complained, he took over the role as Mr Mum as he became known as. He backed me and believed me through the darkest of dark moments.
I was at the end of my tether waiting for the Multidisciplinary Pain Clinic Appointment to come. 18months after moving to FNQ, Justin and I flew down to Brisbane for the long awaited appointment, I was so stressed after waiting for so long I finally had a chance to talk to someone. In this appointment, I was taken off of Morphine as such and put on Brupenorphine, a tablet which you put under your tongue, they were a like a synthetic morphine that your body didn't get used to, and you didn't have to keep increasing the dose. The withdrawal from the Morphine was shocking, I thought I was going to die. The doctor their said that I wouldn't have any symptoms, yeah right! it was terrible, sweats, shakes, nausea, to name just a few. Anyway, after the symptoms subsided, the pain relief was good the bad, it was a yo yo effect, it also depended on what I had eaten or drunk before or after the tablet as to how effective it was. The other medication they put me on at this appointment, was Gabapentin, this is an Epileptic drug that helps control seizes, but also is a good help in the use of pain control. So he prescribed this as well. They also talked about maybe changing my anti-depression medication to a tricyclic tablet, this is one of the older type of medication, as I had tried two other types for depression and found they didn't help much. They said that (Endep) as well as an antidepressant is also found to be of use with your pain receptors. Also I was put on a waiting list to attend a 2wk pain clinic, where you stay there and attend group sessions, but there waste be a 12month wait. We walked away felling that there was other options. With the Brupenorphine and Gabapentin and maybe in the future the Endep.
At the next appointment in Brisbane, we flew down wanting to maybe start the Endep as I needed something for the break through pain, this is pain that pushes you over the edge and you need to go to hospital. The specialist, prescribed a small dose of Endep, as I was taking the Zoloft, an Anti-depressant, which they hoped to keep going with both. Also, we made an action plan for if I had to go to hospital, before, if I want, they would want to give morphine through IV, with the Brupenorphine in my system Morphine would make me sick. So, he set a plan in place and they would give me Brupenorphine and Catamin.
The 2 week program mentioned at the first appointment was due to come up, which I asked about at the next Brisbane appointment. They booked me in for the end of October.
I had to come down from Cairns and stay in hospital, without my husband and Kids. It was so scary, something I imagine you would see in a movie. I arrived and we were taken up to the ward, where we were signed in and our medications were taken from us, we were seen by a barrage of doctors all asking the same question and having to go over the past that you would much rather put behind you. The doctors were from all different areas, from Mental Health, Psychiatrist and Psychologists, finding where you are at, to the Physiotherapist, Thai Chi, Water Aerobics Occupational Therapist and Nurses. They all did seminars, group and one on one sessions. By the end of the first day we were all emotional. That night the medications were all completely mucked up and we were treated like drug addicts, the lady next to me and myself, and the two blokes opposite us, we were left very upset and told that we should only talk to the doctors in the morning about our medication and that we had our chance and we would have to wait until the morning. The muck ups were pretty important. The next morning we were woken to find about seven doctors at the end of our beds, wanting to talk to us. This is the strangest feeling, you have about 4minutes to get out what you had to say and that was that, even then the doctors forget what you had said by the time they make their notes.
Okay so the start to the 2 weeks wasn't good and I lived with reflux for a week before getting my medications and when I did get them they gave the wrong mg dose, so again the problem stayed. I missed my family really bad, and talked heaps. Through the weeks programs the doctors changed my Brupenorphine Sublinugal (under tongue) to a weekly patch, called Norspan 20mg. The pain relief was so much more at a constant level, the problem with these is that they wouldn't stay on. They tried everything tapes, dressings bandages, this made me pretty anxious, the fact that I was only allocated one patch a week.
What a turning point that was...
I found myself dreading the patch change over day, I would stress at Justin to put it on properly or even where we would put it. Each week it would burn my skin where it was positioned, we were supposed to only apply it to the upper torso, I am by no means small and the patch would not stick to an area where the skin could stretch or flex. In the end I asked the doctor to prescribe a lesser dose as the patch would be smaller and I could place it on my arms. So this is where I was given a 10mg (half the size of the 20mg) and a 5mg (quarter the size of the 20mg). These were good as I put them on my wrists and wore a headband wrapped twice around my wrist.
I managed the 15mg really well and found myself thinking that, if I could do the 15mg what about the 10mg only. I found myself asking for the script for the 15mg and thinking that if I only had the 10mg patch to worry about, how would I go. By the end of the script I found that I was managing on the 10mg. So on the next visit to the doctor I told him that I only wanted the 10mg, he was proud, and so was I.
I found myself for the first time since I was a volunteer Ambulance Attendant, that I was proud of myself. I have never had a positive opinion of myself, so this was a real crazy notion.
I was more than ever spurred on to kick this medication, within the month script and a happy husband I reduced to the 5mg patch. So after going through a bit of a withdrawal I was down to the last step 5mg then nothing. Yeah Yahoo!!etc. My doctor said I shouldn't rush this but he wasn't about to stand in my way. Over the years of seeing my doctor he had said some crazy things, which I thought at the time as far out and stupid comments like, " you can beat the pain" or "you have the power to not let the pain control you" " it is your choice as to whether you have a good day or a bad", it is these and many more that I now look back on as not so far out and many have come true.
It is now Saturday before Mother's Day, and I feel, for the first time that I deserve to have this day, I never thought that I would be here writing my story openly and honestly, I am proud. My family mean the world to me. I control the pain, the pain will never control me again . On Monday of this week I was supposed to change my 5mg patch, I quiet knowingly left it on and took it off because it was falling off.
For the first time since June 2002 I HAVE NO OPIOID OR MORPHINE, as far as I am concerned I will never ever have any of those again.
Yes, I still battle the pain, it will never be gone, but I have learned to live with it. I still have lots of bad days, but I deal with them as they come. As well as the pain I suffer depression and I have a child, with Aspergers. None of my days are easy, but they are allot easier now I don't have opioid drugs, clouding my judgement.
My husband Justin as I was saying above, is still my carer, but, he has been starting up his own business, called "Mossman Computing @ Your Service. He works from home and on days where I'm not the best he stays home on others I might go with him, or I stay home. He has always been there for me and I will always be there for him. We have set up an office at home where we both work, I work on my jewellery and he on his computers. It is so great for us to have this time together and we help each other.
I don't look back on what we have been through and wish it was different. Everything happens for a reason and it has bought us as a family so much closer and Justin couldn't have still been working for Bi Lo, the Management and Hours were killing him. He is up here in a beautiful place and we have a business that is fantastic and suits our family situation. Justin is doing what he always wanted to do since he was in Primary School, a Computer Technician.
I am proud of my whole family for their support and helping us through the toughest of tough times,
Thanks for reading my life and I hope to write again soon
Michelle
