Ann Marie's Story (Aug 11, 2013)
When I was younger I was never that ill I used to get stomach cramps but nothing extra ordinary, so when I did begin to feel sick constantly I knew something wasn't right. I suppose it all began about 6 months after my leaving cert. I took a year break between school and college and was working in a furniture shop; I started getting really sore and swollen knees and just decided it was down to lifting heavy objects in the shop and being on my feet all day. This went on for a while the swelling never went down, I went to GP got the usual blood tests done and the inflammation marker was abnormal, my GP is great if she doesn't know what's wrong she will tell you she doesn't, but will find someone who does. I was then referred to a consultant in my local hospital. I didn't think anything of it and went to two clinic appointments both times only seeing, registrars who kept looking at my nails for bumps which they never found, telling me to come back in 3 months to look again. I decided that they didn't know what they were doing, all I need was a bit of lifestyle change (eat healthy and a couple of multi-vitamin tablets) and id be fine so I stopped going to the clinics.
I started college the following September and everything seemed fine except I was so tired. As a college student, I was thinking I would be able to go out all night, study all day and work all weekend like most students; I would be fine that didn't happen. I would spend 13-14 hrs in bed no problem, my friends just thought I was too tired and didn't bother to walk to college. College work really suffered and so did the social side all I was fit to do was watch TV and sleep. I remember close to the end of the year waking up in the middle of the night and having severe aches all over my body, I blamed it on the cold house thinking I had the flu. I didn't move from the bed for a couple of days after that. This happened to me a couple of times along with swollen fingers. One weekend my feet and hands were so swollen I couldn't put on my work shoes and I couldn't work. After a few weeks of swollen limbs I began to get really sharp sudden headaches with extremely achy joints, another trip to the GP took the usually bloods except this time after a day or two the GP tried to contact me she couldn't so rang my sister and told her I need to go straight to A&E. She never really explained why, they had to do a CT scan on my brain to make sure everything was okay. I was in hospital for 2 days and they found nothing they put it down to sinusitis gave me antibiotics and sent me home. I knew I wasn't well, I didn't feel like me anymore. All these doctors were saying I was fine, I defiantly believed people thought I was making it up.
My mother at this stage was getting sick of no answers so we got a private appointment with the original consultant, he then diagnosed me with Rheumatoid Arthritis gave me I-brofen and sent me on my way. He also said I was at the very mild end of the scale for RA and it wouldn't really affect me for a good few years to come. The following 3 months I ended up in A&E more times than I can remember but it was so often the nurses new my name! I was told it was severe Sinusitis, a virus, Gout, Hemochromatosis, and Swine flu all on separate occasions. In August, I couldn't move brushing my hair and taking a shower would cause serious agony, my boyfriend or my mother would have to dress me most mornings help me down the stairs to the couch and then at night back up the stairs and ready for bed. I couldn't work, eat or drink and could barely lift my arms. Eventually, my mother just took me to A&E, admitted me to hospital and told me I will not be leaving until they know what's going on. At this stage I was dehydrated and completely bed ridden, I was living off Complan Vitamin drinks just to make sure I was getting some nourishment but even that was a struggle.
I lost a stone and a half in two weeks; I couldn't hold anything down even medication. They pumped me full of steroids and did a million tests. Eventually the consultant mentioned lupus. I'll never forget the look on my mother's face she was horrified, she was never any good at hiding her emotions. We had heard of it but new nothing about it, he couldn't confirm it as he said it was out of his field but he also didn't explain what it was or how it will affect me. I was mixed with emotion, delighted I had final got a diagnosis but devastated that this was me forever and I didn't even know what that was. I was then transferred to another consultant in another hospital. In the meantime I was on a high dose of steroids and Plaqunil until my appointment. The steroids were fantastic I felt so well I thought these were the best thing in the world, but then I began to get extremely anxious, I had really bad shakes and sleep was non-existent. Not to mention the size of my face doubled in the space of 3 months.
When I went to the consultant in November, he confirmed it was SLE. He told me and I quote "once you take the tablets you will lead a completely normal life, and do everything you want to do" which is a little stretch from the truth, in my case anyway. I continued to feel crap as I came off the steroids, so in January 2010, He decided the Plaqunil wasn't enough and put me on Imuran as well. Not much changed I had to take a year out of college because I had missed so much. During that year, my eyes started to swell and close up for no reason, leading to more trips to A&E and I was referred to a neurologist consultant, he couldn't figure out what it was that caused this. My eyes continued to swell it was like a black eye without the bruise! It happened about four times in 3 months and stopped. I still to this day I don't know why that happened.
I went back to college in September and in November I began to get this sharp quick pain down by side and kidneys it was so awful, especially when I took a deep breath my whole body would jump and tense with the pain only making it worse. More A&E trips, I was told it was kidney stones for about 2 weeks, until my consultant was told about it and it was confirmed that the lupus was now in my kidneys, I was back on the steroids! I now had to go see a new consultant for my kidneys; I was put on new medication called Cellcept and the Plaqunil. By February last year the pain had never left I still had this dull ache all the time especially in my chest. It had now spread to my lungs I was put on steroids indefinitely and sent to a lung specialist as well. I got x-rays which showed a bit of fluid but nothing serious. So that is now four consultants and 6 months later and still no clear idea or solution. Finally I got a C.T scan done in June 2011, of my chest showing fluid around the lungs and heart and by process of elimination they diagnosed me with shrinking lung syndrome! I had never heard of it before its rare enough and meant I was losing the capacity of my lungs. Walking or talking too fast and I was breathless, when I would lie down it would take me ages to get comfortable. It felt like someone was sitting on my chest and I couldn't catch my breath. I was in a friend's house on a random night and I suddenly couldn't catch my breath started to panic (which made it worse) and was taken to A&E again, the bottom section of my left lung wasn't inhaling any air. It was the first time my friends had seen me like that and they got a fright.
The respiratory consultant wanted to start me on Cyclophosphamide, a serious chemotherapy drug that can affect your ovaries and infertile, that is where I drew the line, I just said no. They hadn't got it right so far with all the treatment, what if they were wrong again. They were jeopardising and possible taking away the decision for me to have children, but also for my partner we have been together nearly 6 years I couldn't decide that for him as well. I decided to try and do things naturally I gave up wheat, dairy and MSG it helped a great deal, I am trying every alternative therapy available praying something will work.
The consultants said they would see if they could explore another option so in October they put me on the list for Rutuximab, it's a day treatment usually for Rheumatoid Arthritis but in some cases with lupus it had worked. It would be two days, two weeks apart were they would put me on a Drip line and take me off the steroids. The side effects were minimal and it seemed to offer a lot. I began the treatment in November last and in December I came off the steroids for the first time in 10 months. After both days on the treatment I was extremely irritable, I'm not sure if that was the treatment or if I was just annoyed at the situation and at myself. I had always hated taking medication, or subjecting myself to something that was un-natural. I never took drugs I never smoked and I tried to keep healthy, I disagree with health pills or diet pills, so this was going against all that I thought was right. The rutiximab was a God send my chest is not a 100% better but at least I can walk to the shop without getting breathless. I have felt the best I have ever felt in the last 6 months with more good than bad days still the odd swollen joint.
I finally thought it had started to get under control, when the protein in my urine started to increase suggesting lupus activity in my kidneys. Again the dreaded treatment of Cyclophosphamide came up again. The only way of knowing for sure was to get a kidney biopsy done, a bit nerve wrecking but I got through it. It turned out I had type 3 lupus in my kidneys but it was inactive and the medication I was on will hold it there I dodged the bullet again!
Out of everything I have been through all the pain and stress and all emotions that came with it, without a doubt it has made me a better, stronger more defined person. They always say in your lowest points who find out who you are well I did, I also found if it wasn't for my mother and boyfriend Kieran I would not be the person I am today, I would have given up a long time ago. It's the main thing I am thankful, if I never got lupus I would have never realised how much they care for me and I'll never be able to thank them the way they deserve. I am surrounded by great family and friends and a support system that can't be beaten. I have met amazing people because of my lupus, like my first "lupie" friend Kate who has always understood when no one else did and who introduced me to this amazing group.
Lupus group Ireland it gives the support and help that only people with lupus can and I would be so lonely without it..