BenHornsby
11-07-2017, 01:21 AM
Hi All,
I have only just started looking to help others and myself online with my condition and story, while looking into some answers of some new developments with myself and wanting to find answers thought the more we know the better we can deal or manage this.
I am going to be honest and open to what happened along my journey as the benefit of this to others I hope would help in some way, hope I don’t boar you to lose interest in reading though.
I am also ashamed of some parts of my life mentioned but feel it’s important to mention medically and I would not be the strong individual I am today without traveling down the roads I have.
About me:
I am 41 years old with the mental age of a 19 year old. I love the outdoors and anything that gets the hart racing (extreme sports nut for sure), I have broken lots of bones in my pursuits including my back with no real lasting effects and just odd moments my body reminds me I am really am not a super hero. I am a very relaxed (borderline horizontal) person, most of the time I put other people needs before mine and go out my way to help people if I can and to the point of making my life harder, the satisfaction I get from this is better than any financial or other reward for me.
My family has not had an easy time, but knowing there is always somebody that’s worse off than yourself kept us all moving forwards, my little brother was the first baby that had a kidney transplanted in the UK and has had also made it through other medical problems including cancer, my parents split up when we were teenagers due to the stress of having 4 children the first passing shortly after birth and my little brother mentioned and older brother having an induced coma due to meningitis was just too much, but give them the credit of holding it together until we in the late teens. My father has also passed with cancer and never met my wife and family, but I hope would be proud of us.
I have been a smoker since I was 20 and have given up unsuccessfully for the later part of the journey but not far away from my next attempt, in total I have not smoked for 2 years in total. In my late teenage years and early 20s I was a recreational user and tried the mainstream oral social/recreational drugs but never got hooked or dependent, after my juvenile run when I started changing from a boy to man (late developer) I was just an occasional cannabis user. Please don’t hold the above against me, people change and grow into the people we admire in life. I soon realized I need to live my life instead of riding it if that makes sense and started working in events and then starting up a company I could call my own and build the future I want for my family.
My GPA journey:
So I shall start from the beginning before I knew about GPA, I was an event/festival IT business owner working very long days and working away for weeks at a time. Working away at a show in the UK on the Isle of White doing 16h days to make sure the services we offered worked to a tight deadline, so a high stress environment making sure the organisers/contractors and emergence services had internet/phones/CCTV in remote locations they needed to have a successful and safe event.
For a couple of years I thought I just worked too hard and over did things a bit as a lot of people would I am sure in this environment. Things started changing when my lower legs started to slow down with pains in my ankles and knees. I now know this to be fleeting arthritis, it would start affecting my left knee and dissipate after a day or so and then the right side would suffer in the same. After a week of it jumping about the limbs I would get a full body lockup and movement was painful to do most things and although not bed ridden was like doubling my age, I would be as right as rain ready to start abusing my body with work again in a week or so. Over the next few years the pain and stiffness gradually gets worse and knocks me out for longer each time.
I had lots of little flare-ups along the way and just carried on thinking I was unfit or working too hard, gave myself a big cup of man up and got my head down to do the work.
A new joy had turned up in our life’s at this point our first born a boy in February 2013, was still random infrequent flare ups with no reason and pattern for the triggers so continued to work hard and try to take it easy when it stared but never stopped work. This is about the time things went downhill quickly for me and should of looked to get help sooner. HDInsight is a wonderful thing now!
This had been going on for a couple of years and at show in Derry, Ireland in May 2013 was the first time I knew something more was wrong but as you do I carried on and home in a couple of weeks to see a doctor for advice. I was told to slow down and was just exhaustion through work, stress ect. This was the same as before but the recovery time took another week for it to pass (not helping by doing what I could and still working through it), Stubborn/headstrong comes to mind.
My next flare-up was the trigger to finding a diagnosis to my problems, it was at yet another show (3 weeks of work) at Lullworth Castle in Dorset in July 2013. Again same as before but at the point of finding hot baths and showers helped the pain and movement from my last flare-up I tried to ease the suffering with a hot bath, I was in a rented cottage and once in the bath found I could not get out and with no help as colleges had started early for the day to help cover me. I did not have a phone to hand to ask for help so tried emptying the bath to roll over and climb out, no luck I just could not do it... after an hour of trying. So then thought lets fill it to the top and float out and this was a winner but with a struggle, getting down the stairs on my bum at a rate of a step a minute was fast, found painkillers (over the counter drugs) and the max I could and a little over. Again carried on working of sorts and was just sitting in an office managing staff for the show.
After a few days of lighter duties it started to subside a couple of days later decided to make a run for home in the lorry, I got 130 miles before it hit in a hard way, legs seized up and was struggling to change gear (very heavy clutch) so braking would soon be a problem and thought it’s time to stop for a brake for minuet and more importantly other people’s safety. I thought an hours sleep/rest on in the truck cab would do the trick but after about 30mins realized that this was not going to get better, I had another friend and staff member in a car behind me in convoy to help me if I needed it, at this point I was flat across all 3 seat in the cab and could not move, I had to call an ambulance as no matter how hard I tried I could not sit up due to pain. I was on gas and air for an hour and then they had to board me out of the truck, they said they have a 5 hour wait in AnE so they popped me in the car behind and was taken the last 30 miles home by car as a passenger.
The next day was not so bad as I was mobile but at the speed of a 80 year old and went back the GP/Doctors, I was sent to hospital for blood tests, flare-ups were every 3 weeks now and would immobilize me regularly for short periods. I was put on a high dose of steroids (prednisolone 50mg a day) and the other drugs to protect the effects of the steroids.
My GP was amazing and very quickly thought it was a immune disorder and started down that road with me and the rumatology department at Warwick hospital, after a couple of weeks of testing started seeing my bloods go up and down with the stats/markers.
Trying to limit the exposure to the long days but unavoidable at shows, late September at same show on the isle of white (now a couple of years on from the first signs of problems) I started getting very horrible abdominal pains and that had been growing over a couple of weeks and started to have me doubled up on the floor where every I was, some medic friends notice me hiding behind my office back stage struggling to deal with the pain and the onsite doctor came to have a look and poke (Thursday, day before the show opened) so was convinced that I had to be there... fool me hay... the prescribed some heavy pain relief and finished the show over the weekend and got myself home for Monday.
The next day was admitted to AnE and was on all fours screaming the place down with morphine not even denting the pain and then put on other drugs I had no idea what was going on... I remember signing the forms to have my appendices removed vie keyhole surgery and remember getting from 5 to 3 on a countdown. After waking about 14h later I was on a ward and not really with it but was told not to move much and had just had some major surgery, as the days went by the pain relief was reduced slowly and I was becoming more aware of what happened. They had found that 2/3 of my guts had died and gone rotten and this was causing the pain, so very kindly removed the bad bits and made a patchwork quilt out of my guts. They would not say its link and has never been confirmed by my doctors but I believe the blood supply had been reduced or cut off and that was the cause in connection with GPA.
I am very lucky with a caring family that traveled far to support me and my very supporting wife that had enough on her plate with the little man that had his own issues starting his life, baby problems of tongue tie, reflux and colic.
My rumatology consultant has also been amazing and quickly put me on to Rituximab as we want to continue our family although not planned yet would love a brother or sister to our first born, this took allot of research and checking to make sure I/we would not inflict this on any addition to the family and also that our first has not got trouble ahead for him? They started me on 2 infusions 2 weeks apart every 6 months and worked well for just over a year and a half, but was evident that towards the end of the period my legs started go in the last 6 to 8 weeks, so they moved the infusions to every 4 months and this has been working really well so far to date.
I have had eye problems of losing sight for a few seconds/mins and sinus problems through this journey, but now on the rituximab have not allot of other flare-ups or problems that I would connect to GPA. Once or twice a month I get Migraines that are very light and sound sensitive and have family history of this through my Father and older brother.
Jumping forward to now and some new developments, I have just had the second treatment of 2 (2 blasts of rituximab every 4 months 2 weeks apart) and our second child was born the day after treatment, 4 tough sleepless weeks later I started getting pains in my left temple. Putting this down to lack of sleep with the new born and selling and shutting down one of my company’s. The pain starts slow in the morning and increases through the day, bit of a sick feeling and very tender temple, taking this as migraine at first but soon realizing that it was not a light and sound sensitive pain reaction thought more into it.
After 5 days of pain and over the counter drugs not working went to my GP for help. Instantly I needed bloods doing to check my markers and went in to AnE and got admitted with the doctor thinking this is Temple Arteritis and the next 4 days of lots of bloods, x-rays, eye checks, CT scans. I am no further forward today as i start to wright this intro story and think its helping me to go through it and look objectively at the history. The pain is moving from the temple through the back of my eyes and to the top but not in the eye balls. I am guessing this may be my sinuses now and Monday (today) will be calling in and mentioning this as it may speed up sorting the pain out at this point any advice would be taken very happily :-)
I do hope my story helps in some way and need to start reading some of your stories, please do message me any questions and if I can help will. I live in the UK in the midlands and would be happy meet and talk about the above J I am also a bit scatty so please do bear with me for any reply’s as my little world is so very hectic at the moment with my boys and work.
Ben
I have only just started looking to help others and myself online with my condition and story, while looking into some answers of some new developments with myself and wanting to find answers thought the more we know the better we can deal or manage this.
I am going to be honest and open to what happened along my journey as the benefit of this to others I hope would help in some way, hope I don’t boar you to lose interest in reading though.
I am also ashamed of some parts of my life mentioned but feel it’s important to mention medically and I would not be the strong individual I am today without traveling down the roads I have.
About me:
I am 41 years old with the mental age of a 19 year old. I love the outdoors and anything that gets the hart racing (extreme sports nut for sure), I have broken lots of bones in my pursuits including my back with no real lasting effects and just odd moments my body reminds me I am really am not a super hero. I am a very relaxed (borderline horizontal) person, most of the time I put other people needs before mine and go out my way to help people if I can and to the point of making my life harder, the satisfaction I get from this is better than any financial or other reward for me.
My family has not had an easy time, but knowing there is always somebody that’s worse off than yourself kept us all moving forwards, my little brother was the first baby that had a kidney transplanted in the UK and has had also made it through other medical problems including cancer, my parents split up when we were teenagers due to the stress of having 4 children the first passing shortly after birth and my little brother mentioned and older brother having an induced coma due to meningitis was just too much, but give them the credit of holding it together until we in the late teens. My father has also passed with cancer and never met my wife and family, but I hope would be proud of us.
I have been a smoker since I was 20 and have given up unsuccessfully for the later part of the journey but not far away from my next attempt, in total I have not smoked for 2 years in total. In my late teenage years and early 20s I was a recreational user and tried the mainstream oral social/recreational drugs but never got hooked or dependent, after my juvenile run when I started changing from a boy to man (late developer) I was just an occasional cannabis user. Please don’t hold the above against me, people change and grow into the people we admire in life. I soon realized I need to live my life instead of riding it if that makes sense and started working in events and then starting up a company I could call my own and build the future I want for my family.
My GPA journey:
So I shall start from the beginning before I knew about GPA, I was an event/festival IT business owner working very long days and working away for weeks at a time. Working away at a show in the UK on the Isle of White doing 16h days to make sure the services we offered worked to a tight deadline, so a high stress environment making sure the organisers/contractors and emergence services had internet/phones/CCTV in remote locations they needed to have a successful and safe event.
For a couple of years I thought I just worked too hard and over did things a bit as a lot of people would I am sure in this environment. Things started changing when my lower legs started to slow down with pains in my ankles and knees. I now know this to be fleeting arthritis, it would start affecting my left knee and dissipate after a day or so and then the right side would suffer in the same. After a week of it jumping about the limbs I would get a full body lockup and movement was painful to do most things and although not bed ridden was like doubling my age, I would be as right as rain ready to start abusing my body with work again in a week or so. Over the next few years the pain and stiffness gradually gets worse and knocks me out for longer each time.
I had lots of little flare-ups along the way and just carried on thinking I was unfit or working too hard, gave myself a big cup of man up and got my head down to do the work.
A new joy had turned up in our life’s at this point our first born a boy in February 2013, was still random infrequent flare ups with no reason and pattern for the triggers so continued to work hard and try to take it easy when it stared but never stopped work. This is about the time things went downhill quickly for me and should of looked to get help sooner. HDInsight is a wonderful thing now!
This had been going on for a couple of years and at show in Derry, Ireland in May 2013 was the first time I knew something more was wrong but as you do I carried on and home in a couple of weeks to see a doctor for advice. I was told to slow down and was just exhaustion through work, stress ect. This was the same as before but the recovery time took another week for it to pass (not helping by doing what I could and still working through it), Stubborn/headstrong comes to mind.
My next flare-up was the trigger to finding a diagnosis to my problems, it was at yet another show (3 weeks of work) at Lullworth Castle in Dorset in July 2013. Again same as before but at the point of finding hot baths and showers helped the pain and movement from my last flare-up I tried to ease the suffering with a hot bath, I was in a rented cottage and once in the bath found I could not get out and with no help as colleges had started early for the day to help cover me. I did not have a phone to hand to ask for help so tried emptying the bath to roll over and climb out, no luck I just could not do it... after an hour of trying. So then thought lets fill it to the top and float out and this was a winner but with a struggle, getting down the stairs on my bum at a rate of a step a minute was fast, found painkillers (over the counter drugs) and the max I could and a little over. Again carried on working of sorts and was just sitting in an office managing staff for the show.
After a few days of lighter duties it started to subside a couple of days later decided to make a run for home in the lorry, I got 130 miles before it hit in a hard way, legs seized up and was struggling to change gear (very heavy clutch) so braking would soon be a problem and thought it’s time to stop for a brake for minuet and more importantly other people’s safety. I thought an hours sleep/rest on in the truck cab would do the trick but after about 30mins realized that this was not going to get better, I had another friend and staff member in a car behind me in convoy to help me if I needed it, at this point I was flat across all 3 seat in the cab and could not move, I had to call an ambulance as no matter how hard I tried I could not sit up due to pain. I was on gas and air for an hour and then they had to board me out of the truck, they said they have a 5 hour wait in AnE so they popped me in the car behind and was taken the last 30 miles home by car as a passenger.
The next day was not so bad as I was mobile but at the speed of a 80 year old and went back the GP/Doctors, I was sent to hospital for blood tests, flare-ups were every 3 weeks now and would immobilize me regularly for short periods. I was put on a high dose of steroids (prednisolone 50mg a day) and the other drugs to protect the effects of the steroids.
My GP was amazing and very quickly thought it was a immune disorder and started down that road with me and the rumatology department at Warwick hospital, after a couple of weeks of testing started seeing my bloods go up and down with the stats/markers.
Trying to limit the exposure to the long days but unavoidable at shows, late September at same show on the isle of white (now a couple of years on from the first signs of problems) I started getting very horrible abdominal pains and that had been growing over a couple of weeks and started to have me doubled up on the floor where every I was, some medic friends notice me hiding behind my office back stage struggling to deal with the pain and the onsite doctor came to have a look and poke (Thursday, day before the show opened) so was convinced that I had to be there... fool me hay... the prescribed some heavy pain relief and finished the show over the weekend and got myself home for Monday.
The next day was admitted to AnE and was on all fours screaming the place down with morphine not even denting the pain and then put on other drugs I had no idea what was going on... I remember signing the forms to have my appendices removed vie keyhole surgery and remember getting from 5 to 3 on a countdown. After waking about 14h later I was on a ward and not really with it but was told not to move much and had just had some major surgery, as the days went by the pain relief was reduced slowly and I was becoming more aware of what happened. They had found that 2/3 of my guts had died and gone rotten and this was causing the pain, so very kindly removed the bad bits and made a patchwork quilt out of my guts. They would not say its link and has never been confirmed by my doctors but I believe the blood supply had been reduced or cut off and that was the cause in connection with GPA.
I am very lucky with a caring family that traveled far to support me and my very supporting wife that had enough on her plate with the little man that had his own issues starting his life, baby problems of tongue tie, reflux and colic.
My rumatology consultant has also been amazing and quickly put me on to Rituximab as we want to continue our family although not planned yet would love a brother or sister to our first born, this took allot of research and checking to make sure I/we would not inflict this on any addition to the family and also that our first has not got trouble ahead for him? They started me on 2 infusions 2 weeks apart every 6 months and worked well for just over a year and a half, but was evident that towards the end of the period my legs started go in the last 6 to 8 weeks, so they moved the infusions to every 4 months and this has been working really well so far to date.
I have had eye problems of losing sight for a few seconds/mins and sinus problems through this journey, but now on the rituximab have not allot of other flare-ups or problems that I would connect to GPA. Once or twice a month I get Migraines that are very light and sound sensitive and have family history of this through my Father and older brother.
Jumping forward to now and some new developments, I have just had the second treatment of 2 (2 blasts of rituximab every 4 months 2 weeks apart) and our second child was born the day after treatment, 4 tough sleepless weeks later I started getting pains in my left temple. Putting this down to lack of sleep with the new born and selling and shutting down one of my company’s. The pain starts slow in the morning and increases through the day, bit of a sick feeling and very tender temple, taking this as migraine at first but soon realizing that it was not a light and sound sensitive pain reaction thought more into it.
After 5 days of pain and over the counter drugs not working went to my GP for help. Instantly I needed bloods doing to check my markers and went in to AnE and got admitted with the doctor thinking this is Temple Arteritis and the next 4 days of lots of bloods, x-rays, eye checks, CT scans. I am no further forward today as i start to wright this intro story and think its helping me to go through it and look objectively at the history. The pain is moving from the temple through the back of my eyes and to the top but not in the eye balls. I am guessing this may be my sinuses now and Monday (today) will be calling in and mentioning this as it may speed up sorting the pain out at this point any advice would be taken very happily :-)
I do hope my story helps in some way and need to start reading some of your stories, please do message me any questions and if I can help will. I live in the UK in the midlands and would be happy meet and talk about the above J I am also a bit scatty so please do bear with me for any reply’s as my little world is so very hectic at the moment with my boys and work.
Ben