For about seven years now, Angie has been bugging me to write something about my experience with lupus. Finally, just as she seemed to give up on me, understandably so, I suddenly found some inspiration and reason to do as she asked. I will explain why later.
My problems began in March 1998 while I was at work. I started with flu like symptoms which progressed to fevers, followed by night sweats. Three visits to the GP and a bunch of antibiotics later, I had not improved at all.
In fact, my fevers were spiking higher daily and having been like this for three weeks, something had to be done. Since I was working in a bank at the time and really loved my job, I was desperate to get back as quickly as possible. I remember that particular Sunday when we decided to use my private health insurance and I was admitted into the Cromwell Hospital.
I was seen at about midnight by a doctor, Dr M, and was assured that I should not be there for more than a few days but that we would find out was exactly was going on. Well she and a rheumatologist she asked to review me (Dr A), and a further five consultants, failed to realise I had lupus and treated me for TB instead. I can't really moan too much about the others but Dr M and Dr A the rheumatologist had got it badly wrong.
Since the diagnosis of TB was never confirmed by any test, they were constantly doing biopsies to try to make sure that I did in fact have it. Needless to say, the few days turned into one week, then two and then three months. It was a complete nightmare. I reacted to the TB medication where my fevers would go from normal to through the roof, I would have violent rigors, and to top it off she kept giving me more until I refused! I am not going to go into greater detail but I nearly died on two occasions while in the hospital and if it had not been for my Mum insisting on staying with me on those particular nights I would not be here. She must have known something was going to go wrong because they were the only two nights she stayed throughout the three months. Finally I told Dr M that I did not care anymore and that I was leaving when the world cup started and that's exactly what I did.
The next thing that happened was that one of medications affected my liver and I ended up going back a month later and spending my birthday in the hospital. When that problem got resolved, the doctor decided that since they still had no definite confirmation of the TB that I should have another lymph node biopsy. This was my third and was done on Christmas Eve 1998.
As soon as I woke up I knew something was wrong because I was in way too much pain. Of course for the next month I was told that it was normal, it will get better, it may be a frozen shoulder etc etc. In the meantime I was noticing that I was unable to use my arm like before and eventually was unable to use it at all. Dr M sent me back to Dr A the rheumatologist who wanted to inject my shoulder with steroids. I refused and told him that I wanted a nerve test as I believed that the surgeon had cut one of my nerves.
He arranged it and lo and behold the results showed that my accessory nerve had been cut. I was devastated to say the least. I could barely move my arm away from my side and after discussions with Dr M, Dr A and my GP at work, I was told that I would be lucky to get fifty percent of movement back in my arm and that would only happen if I had another operation to try and fix it. I had lost all confidence in Dr M by now and decided that I would find the best person for the job on my own. Having done so, I got the surgeon who did the original operation to refer me. It's a strange thing with some doctors, they don't want to see you when you are complaining of pain as I was but when I had figured out the problem, the surgeon wanted to see me! No thanks - just give me my referral letter please! My employers were great and basically accepted the fact that I was in for a couple of weeks then out again and then back in and then out again.
The surgeon that was doing the repair job explained to me that if I did not have the operation then it was likely my arm would be paralysed without any hope for recovery. Apparently, that nerve supplies the muscles that enable you to move your arms. Therefore the only way to reverse it would be to try and repair the nerve. Quite a thought, how do you fix something so small that you can not see it with the naked eye? You don't.
He was going to take a nerve from my arm and put it along side the damaged accessory nerve and we then had to hope it would fuse together and ultimately give me some movement back. I really didn't have a choice, and since it was my right arm and I'm right handed, I felt even worse.
Two days (Feb 1999) later I was under the knife again and after a long operation that I knew nothing about, I awoke to find a huge plaster on my neck but could not find where they had taken the replacement nerve from. I checked both arms and legs but there was nothing. Then it hit me. They must have had a problem and had to abort the operation. I was so upset. Not long after the surgeon walked in looking quite pleased with himself explained to me that things went better than expected. When they had opened me up they found that the accessory nerve was not actually cut but had been crushed by a stitch. Having freed it up, he then had to decide whether he should cut it and continue you with the operation as planned or leave it and see what happens. The downside was that if it did not get better then I would have to go in again for another operation. I assured him that he had made the right decision and we would see.
Within three months I had fifty percent of movement back in my arm and was happy. The doctors tried to advise me to have the operation done so that I could get more if it worked. What they did not consider was that if it didn't I would lose the fifty percent I had. I was not willing to risk it and believe me, when you have experienced losing the use of your arm, you will take anything you can get.
I got back to work shortly after and the rest of the year continued with me going for regular blood tests and check ups. Then in July, I met Jana and in September we got engaged. I suppose by now I had figure out that life is way too short and since I knew I was going to marry her what was the point in waiting. Then in November the fevers began again, Dr M suggested that TB drugs can sometimes cause this thing called SLE and that I should stop my medication and it would go. It did not. So I went back and this time she almost seemed annoyed and assured me it would go. It still didn't. Then on the phone she said it was possible my TB was still active and that we would have to try some other medications. Fortunately for me she told me that she was going away and that if I needed anything I should see Dr A. Not a chance. I went to my GP from work and explained to her that I was not convinced about all of this. She agreed and sent me to see someone who knew all there is to know about TB.
I saw Dr P the same evening and the one thing he assured me after examining me was that I did not have TB. He said that he thought he knew what I had but wanted to confirm it and to do so would require me to go into hospital for three days. Well you can imagine my reaction. However, he managed to explain to me why he needed me there and true to his word that was all the time I spent there. At the end of the three days he confirmed that I had lupus. He then referred me to Professor Hughes. Unfortunately, this bit of luck I had came a bit too late and the flare I was having went out of control and I ended up having a stroke on Christmas Day and got admitted to the local hospital where they thought I was crazy. Eventually, Dr P got hold of them on the phone and told them to get a rheumatologist to see me and told them what I had. I don't know too much about my stay at that hospital because that period of time is just blank. I only know what I have been told by my family. Dr P got me transferred back to his care and then coordinated with Prof Hughes about my treatment plan.
It turned out that I have cerebral lupus, antiphospholipid syndrome, and have subsequently added vasculitis, myositis, osteoporosis and avascular necrosis. I have had my hip replaced and been told the other one will have to be done at some point.
My inspiration to write this came from the 'Spoon Theory' which was published in the Newsletter recently. I thought about it and realised that while it was extremely well written and very creative, that there is no way that I could ever have survived like that. If I thought about all the problems that present themselves to me on a daily basis I think I would have flung myself out of the window! I am not recommending this by the way - I tried it once and just cause myself more pain! (just kidding).
I have been married now for eight years to Jana and we have two beautiful children. We do as much as we can whenever I am having a good day and if I am not then we just accommodate that. We are always thinking in a positive way regardless of what we're facing. (I wish I could do this with my golf game!)
Personally I live one day at a time and if I had to put some kind of comparison to how I look at life at the moment it would be this:
Life for me is a bit like a game of Poker. I am dealt a new hand every day. The only stipulation in this version is that I have to play every hand I get. Sometimes it's a good hand and sometimes bad. Every time I get a good one I play it to the full and have a great time doing so. When I get a bad one I try and lay low and get away with as little damage as possible. Either way I am in the game and plan to stay there.