Living with debilitating auto-immune disorders
I was diagnosed with Rheumatoid Arthritis at aged 28. I thought my whole world had crumbled beneath my feet when I heard the prognosis from my doctor. I remember sitting in my car outside my parents home crying as my mum had informed me that my dad was wheelchair bound as a child due to RA. I saw my own future that way - single with a carer with no ahead of me. I was so sad and depressed for such a short time when I later found out that evening that my dad had Rheumatic Fever! According to my mum, they both sound the same!
Upon receiving the diagnosis, I had to obtain a referral to visit a Rheumatologist and the blood test re-confirm the condition. I was put on medication and had to go through three (3) different drug schedules before my Rheumatologist could put me on the TNF blockers. I was initially put on Humira and for quite awhile it worked.
Yes I had the occasional flare-up but other than that my life seemed to get back to normal. I was exercising again and feeling great and just before my 30th birthday I met the love of my life and everything was just perfect...
But then disaster struck. The medication stopped working and I was put on Humira a monthly injection into my tummy. It hurt and I would receive a welt each time. I was always tired despite having lower numbers on my CRP and ESR but my Rheumatologist told me it would take a lot longer for the medication to take effect.
When I met my now husband, on our first date I told him everything. I told him I had Rheumatoid Arthritis, Chronic Asthmatic and that my brother had passed away. I didn't want him to feel blind-sighted at any time. No matter what I told him, he still asked for a second, third and fourth date! On the third date he even asked to meet my parents and so in the similar fashion of our dates, he met them at a mutual place, the local pub.
Life was perfect with Colin. He was good to me, taking me out and being empathetic when I needed it. I felt so special.
I had my gall bladder removed in March 2010 and during the follow-up appointment with the Surgeon I was advised two things: (1) I would most likely experience phantom gallstone-like pain and (2) I had a unique anatomy - my organs are not textbook as in they are not in the same place as most individuals!
After about nine months on Humira, my CRP & ESR numbers increased again and I began feeling worse for wear. My Rheumy wouldn't let me try anything else, instead increased my daily prednisolone tablets. I was now taking 12 tablets per day and 14 every Monday. I felt like a walking chemist! A friend of my parents had a Rheumatologist at the State Arthritis Centre. He recommended I give her a try but of course I needed a referral from my current specialist who didn't seem too pleased. I felt like I was doing something wrong by asking but still got the referral I needed.
My first appointment with Dr Roddy was January of 2012 and heavenly. My appointment was over an hour long and it was one charge. She didn't rush me, listened to every word I said and was very understanding. After doing a check of my joints, she then asked me to lay down so she can check the rest of my body. A few minutes later, she told me I also had Fibromyalgia on top of the Chronic Rheumatoid Arthritis and explained Fibromyalgia was a condition that affects the nervous system. She put me on Lyrica and changed my medication to Enbrel with another appointment in three months.
Things were finally looking up. The new medication was working well and my energy levels increased dramatically. Everything was finally flowing smoothly.
In fact, in March/April of 2012, we made another appointment to see Dr Roddy and discussed options for pregnancy for me after our planned wedding in November the same year. Dr Roddy, advised us the medications I was taking to control the RA & Fibromyalgia will cause defects to a foetus or worse; I could miscarry or give birth to a stillborn child. So with this in mind, we decided to steadily reduce my medications so that my body could be pregnancy ready on our honeymoon. Life could not get any better.
However, that changed in May as I began to experience severe pain in my chest & lower back. One particular night, I awoke on the couch to this severe pain in my chest. Whilst the phantom gallstone pain had occurred many times since the operation, lasting longer each time; this was something different.
I tried to call out to my fiance but being deaf in one ear, he sleeps with an earplug in the only hearing ear and of course, all noise was cancelled out including my screams of agony. I did the only thing I could think of doing...following my dads' advice and drinking a pint of milk - but this didn't resolve the problem. In fact, it only aggravated the problem further.
Crawling on my hands and knees, I made my way until the bedroom where I was eventually able to wake my partner who drove me straight to the ER. I was questioned by both the nurses & doctors if I was pregnant? Did I take drugs? Was I a heavy drinker? Do I smoke? In fact, they even asked my fiance to leave the room so they could ask again in case I was lying or hiding the truth (so to speak). But this was not the case.
They took some blood samples and within a few hours I was informed my lipase levels were very high - well above the normal ranges. Besides a few glasses of wine with meals and my medication, they decided I must have had a small episode and I was promptly discharged with heavier painkillers.
I didn't have any more attacks until June and this is when the pain became so unbearable that I was admitted to hospital, then transferred by ambulance to a neighbouring hospital for further tests. I remained in hospital for 4 days during which the doctors asked my fiance if I had any auto-immune disorders to which he replied no! He didn't realise Rheumatoid Arthritis & Fibromyalgia were classified as an immune deficiency disorder. I corrected the staff when I awoke and once my levels decreased, I was again discharged.
My fiance dropped me off to work on the morning of the 10th June and I remember this day so vividly as it was the day when all previous pain was little in comparison to what I felt this day.
The uncomfortable feeling started off small but then it started to take over all thought processes. My mum happened to call to check on how I was doing and I couldn't help myself.. I started to cry. It got so bad that she called my partner on her mobile (whilst still on the phone to me) and told him to collect me & take me to the hospital urgently. She hung up and a colleague (Juan) who sat opposite me helped collect my things. I am a proud person and had been trying to hide my pain but apparently he had realised something was off when I lost all skin colour!
I walked into reception hunched over whilst Juan handed my handbag over to the receptionist. As he walked away, the pain caused me to double over and without any thought or control, I literally screamed out in agony! A few people gathered around me, one trying to get me to sit and the others trying to straighten me up which only intensified the pain further.
What felt like hours and may have only been minutes, my fiance arrived and with the help of other colleagues, I was placed somehow into the passenger seat with my belongings. I do not recall the drive or how we got to the hospital. All I remember is my fiance parking in the emergency bay and taking me into the hospital to check in. I was placed in a wheelchair as my legs were like jelly and when asked my pain level, I replied an 8 which was upgraded by the nurse to a 10! I remember the nurse saying that he had patients come in saying they were in pain giving a pain score of 10 and still texting people. The fact that I could barely speak and my colour had gone out of my face, put me in the higher pain category.
Another nurse came out and took my blood pressure and whatever the result was from there, caused another nurse to come out straight away and take me through to a bed where my bloods were taken and a shot of Morphine was given to ease the pressure.
A normal person lipase levels are between 50-75. My lipase levels were 2500!! Hence the agony I was in.
The very first night, I slept in a bed in the clinical diagnosis section of the Emergency Department until a bed in a ward could be provided. The following day I was moved to said ward surrounded by older patients. I felt out of place and had to survive hearing these individuals crying each night to sleep. I was no better - the pain was terrible and I was not allowed to eat anything besides having a drip connected to me.
Between June - October 2012, I was admitted to hospital several times due to my lipase levels and eventually in August 2012, I was diagnosed with Auto-immune pancreatitis after spending three weeks in hospital. And in September 2012, I was diagnosed with Systematic Lupus - another auto-immune disorder!
In actual fact, I was released from hospital in late October 2012, literally a few days before my wedding. In fact, I had to have another re-fit for my wedding dress as I had lost 12kg and my dress no longer fit. The dressmakers were great and actually stitched my strapless bra into my dress as a last minute measure to help hold the dress up. Imagine that, a wedding dress (which is quite heavy) being held up by a strapless bra!
I must say, before my wedding to my now-husband. My Rheumatologist, the Gastroenterologist, my parents & I all spoke to my husband Colin in regards to children. He was told by all parties, this was now out of the question. Unlike many other RA sufferers, my body cannot handle pregnancy and I cannot come of the medication to have a child. He understood. I didn't fully believe him and actually gave him the choice to leave should he wish to as we had always discussed having a family. His response was upsetting to the both of us as he couldn't believe I had given him that option.
We married on 3 November 2012 and the wedding was beautiful despite a few issues with some personalities at the wedding itself. I had to be careful of my food intake and could only have one glass of sparkling for fear of setting off the pancreatitis. I even had to give up red-meat and saw a dietician who told me my whole style of eating had to change!
Move forward a week and 10 November we left for the start of a well-deserved honeymoon. A cruise around the South Pacific Islands for 10 days plus 2 additional days in Sydney. It was amazing and an experience I will always treasure.
But it seems, that whilst things can go well for me there is always a down-side. Returning from our honeymoon I was on reduced/restricted duties in my work and finally on 1 July 2013, I became a permanent part-time employee. My employer was very understanding and as long as I did my hours, he didn't care if it was from home or within the office. He was more worried for my health and concerned about my social isolation of working from home. He was the best boss. Of course, he was made redundant in January 2014 and a month later, so was I.
So here I was, a woman of 35 who could only work part-time hours without having an actual hours of operation. I could not apply for employment as I could not stick to set hours as I never know how my condition will be each day and I am sure not all places of employment would be as understanding as the last one.
My husband Colin suggested I study again and obtain my certification to become a Bookkeeper - that way I could work my own hours as and when I was well. In March 2014, I paid out the funds and commenced study to obtain a dual qualification in Bookkeeping & Accounting. My husband had this idea that I could complete the course in a few months & start the business straight away but this went out of the window the moment my health deteriorated and everything went downhill...
TBC
Upon receiving the diagnosis, I had to obtain a referral to visit a Rheumatologist and the blood test re-confirm the condition. I was put on medication and had to go through three (3) different drug schedules before my Rheumatologist could put me on the TNF blockers. I was initially put on Humira and for quite awhile it worked.
Yes I had the occasional flare-up but other than that my life seemed to get back to normal. I was exercising again and feeling great and just before my 30th birthday I met the love of my life and everything was just perfect...
But then disaster struck. The medication stopped working and I was put on Humira a monthly injection into my tummy. It hurt and I would receive a welt each time. I was always tired despite having lower numbers on my CRP and ESR but my Rheumatologist told me it would take a lot longer for the medication to take effect.
When I met my now husband, on our first date I told him everything. I told him I had Rheumatoid Arthritis, Chronic Asthmatic and that my brother had passed away. I didn't want him to feel blind-sighted at any time. No matter what I told him, he still asked for a second, third and fourth date! On the third date he even asked to meet my parents and so in the similar fashion of our dates, he met them at a mutual place, the local pub.
Life was perfect with Colin. He was good to me, taking me out and being empathetic when I needed it. I felt so special.
I had my gall bladder removed in March 2010 and during the follow-up appointment with the Surgeon I was advised two things: (1) I would most likely experience phantom gallstone-like pain and (2) I had a unique anatomy - my organs are not textbook as in they are not in the same place as most individuals!
After about nine months on Humira, my CRP & ESR numbers increased again and I began feeling worse for wear. My Rheumy wouldn't let me try anything else, instead increased my daily prednisolone tablets. I was now taking 12 tablets per day and 14 every Monday. I felt like a walking chemist! A friend of my parents had a Rheumatologist at the State Arthritis Centre. He recommended I give her a try but of course I needed a referral from my current specialist who didn't seem too pleased. I felt like I was doing something wrong by asking but still got the referral I needed.
My first appointment with Dr Roddy was January of 2012 and heavenly. My appointment was over an hour long and it was one charge. She didn't rush me, listened to every word I said and was very understanding. After doing a check of my joints, she then asked me to lay down so she can check the rest of my body. A few minutes later, she told me I also had Fibromyalgia on top of the Chronic Rheumatoid Arthritis and explained Fibromyalgia was a condition that affects the nervous system. She put me on Lyrica and changed my medication to Enbrel with another appointment in three months.
Things were finally looking up. The new medication was working well and my energy levels increased dramatically. Everything was finally flowing smoothly.
In fact, in March/April of 2012, we made another appointment to see Dr Roddy and discussed options for pregnancy for me after our planned wedding in November the same year. Dr Roddy, advised us the medications I was taking to control the RA & Fibromyalgia will cause defects to a foetus or worse; I could miscarry or give birth to a stillborn child. So with this in mind, we decided to steadily reduce my medications so that my body could be pregnancy ready on our honeymoon. Life could not get any better.
However, that changed in May as I began to experience severe pain in my chest & lower back. One particular night, I awoke on the couch to this severe pain in my chest. Whilst the phantom gallstone pain had occurred many times since the operation, lasting longer each time; this was something different.
I tried to call out to my fiance but being deaf in one ear, he sleeps with an earplug in the only hearing ear and of course, all noise was cancelled out including my screams of agony. I did the only thing I could think of doing...following my dads' advice and drinking a pint of milk - but this didn't resolve the problem. In fact, it only aggravated the problem further.
Crawling on my hands and knees, I made my way until the bedroom where I was eventually able to wake my partner who drove me straight to the ER. I was questioned by both the nurses & doctors if I was pregnant? Did I take drugs? Was I a heavy drinker? Do I smoke? In fact, they even asked my fiance to leave the room so they could ask again in case I was lying or hiding the truth (so to speak). But this was not the case.
They took some blood samples and within a few hours I was informed my lipase levels were very high - well above the normal ranges. Besides a few glasses of wine with meals and my medication, they decided I must have had a small episode and I was promptly discharged with heavier painkillers.
I didn't have any more attacks until June and this is when the pain became so unbearable that I was admitted to hospital, then transferred by ambulance to a neighbouring hospital for further tests. I remained in hospital for 4 days during which the doctors asked my fiance if I had any auto-immune disorders to which he replied no! He didn't realise Rheumatoid Arthritis & Fibromyalgia were classified as an immune deficiency disorder. I corrected the staff when I awoke and once my levels decreased, I was again discharged.
My fiance dropped me off to work on the morning of the 10th June and I remember this day so vividly as it was the day when all previous pain was little in comparison to what I felt this day.
The uncomfortable feeling started off small but then it started to take over all thought processes. My mum happened to call to check on how I was doing and I couldn't help myself.. I started to cry. It got so bad that she called my partner on her mobile (whilst still on the phone to me) and told him to collect me & take me to the hospital urgently. She hung up and a colleague (Juan) who sat opposite me helped collect my things. I am a proud person and had been trying to hide my pain but apparently he had realised something was off when I lost all skin colour!
I walked into reception hunched over whilst Juan handed my handbag over to the receptionist. As he walked away, the pain caused me to double over and without any thought or control, I literally screamed out in agony! A few people gathered around me, one trying to get me to sit and the others trying to straighten me up which only intensified the pain further.
What felt like hours and may have only been minutes, my fiance arrived and with the help of other colleagues, I was placed somehow into the passenger seat with my belongings. I do not recall the drive or how we got to the hospital. All I remember is my fiance parking in the emergency bay and taking me into the hospital to check in. I was placed in a wheelchair as my legs were like jelly and when asked my pain level, I replied an 8 which was upgraded by the nurse to a 10! I remember the nurse saying that he had patients come in saying they were in pain giving a pain score of 10 and still texting people. The fact that I could barely speak and my colour had gone out of my face, put me in the higher pain category.
Another nurse came out and took my blood pressure and whatever the result was from there, caused another nurse to come out straight away and take me through to a bed where my bloods were taken and a shot of Morphine was given to ease the pressure.
A normal person lipase levels are between 50-75. My lipase levels were 2500!! Hence the agony I was in.
The very first night, I slept in a bed in the clinical diagnosis section of the Emergency Department until a bed in a ward could be provided. The following day I was moved to said ward surrounded by older patients. I felt out of place and had to survive hearing these individuals crying each night to sleep. I was no better - the pain was terrible and I was not allowed to eat anything besides having a drip connected to me.
Between June - October 2012, I was admitted to hospital several times due to my lipase levels and eventually in August 2012, I was diagnosed with Auto-immune pancreatitis after spending three weeks in hospital. And in September 2012, I was diagnosed with Systematic Lupus - another auto-immune disorder!
In actual fact, I was released from hospital in late October 2012, literally a few days before my wedding. In fact, I had to have another re-fit for my wedding dress as I had lost 12kg and my dress no longer fit. The dressmakers were great and actually stitched my strapless bra into my dress as a last minute measure to help hold the dress up. Imagine that, a wedding dress (which is quite heavy) being held up by a strapless bra!
I must say, before my wedding to my now-husband. My Rheumatologist, the Gastroenterologist, my parents & I all spoke to my husband Colin in regards to children. He was told by all parties, this was now out of the question. Unlike many other RA sufferers, my body cannot handle pregnancy and I cannot come of the medication to have a child. He understood. I didn't fully believe him and actually gave him the choice to leave should he wish to as we had always discussed having a family. His response was upsetting to the both of us as he couldn't believe I had given him that option.
We married on 3 November 2012 and the wedding was beautiful despite a few issues with some personalities at the wedding itself. I had to be careful of my food intake and could only have one glass of sparkling for fear of setting off the pancreatitis. I even had to give up red-meat and saw a dietician who told me my whole style of eating had to change!
Move forward a week and 10 November we left for the start of a well-deserved honeymoon. A cruise around the South Pacific Islands for 10 days plus 2 additional days in Sydney. It was amazing and an experience I will always treasure.
But it seems, that whilst things can go well for me there is always a down-side. Returning from our honeymoon I was on reduced/restricted duties in my work and finally on 1 July 2013, I became a permanent part-time employee. My employer was very understanding and as long as I did my hours, he didn't care if it was from home or within the office. He was more worried for my health and concerned about my social isolation of working from home. He was the best boss. Of course, he was made redundant in January 2014 and a month later, so was I.
So here I was, a woman of 35 who could only work part-time hours without having an actual hours of operation. I could not apply for employment as I could not stick to set hours as I never know how my condition will be each day and I am sure not all places of employment would be as understanding as the last one.
My husband Colin suggested I study again and obtain my certification to become a Bookkeeper - that way I could work my own hours as and when I was well. In March 2014, I paid out the funds and commenced study to obtain a dual qualification in Bookkeeping & Accounting. My husband had this idea that I could complete the course in a few months & start the business straight away but this went out of the window the moment my health deteriorated and everything went downhill...
TBC