Her mouth gaped open. “But you’re too young to have osteoporosis, aren’t you?” We were sitting at the bus stop and a fellow passenger had asked what happened to my leg. Just nine months after my last foot fracture, I have broken the same toe (but luckily in a different place).
Since people are naturally curious, I don’t mind explaining that I’ve fractured a toe. They normally look incredulous that a broken toe joint means wearing a huge AirCast boot all the way up the knee. That’s when, depending on my energy levels, I explain that I have osteoporosis. If they ask more questions, I’ll tell them about the rheumatoid arthritis and Ehlers-Danlos Syndrome too. But sometimes, as I found before, it’s exhausting running through the same story time and again, so I’ll say “It’s a long story.” There are two reasons people look amazed – firstly, the notion that osteoporosis only affects older people, and secondly, that it’s possible to sustain a fracture without having an accident.
A few days ago I went to a support group for people with osteoporosis. We had a very good session on mindfulness. I found the practical guided exercise useful – being in the present moment, becoming more alert to things and stepping out of negative thoughts (about my body, pain levels etc). I liked the idea that ‘thoughts are like clouds; you are the blue sky and the clouds are going past’ – it is a great way to cultivate more positive feelings about a situation. Most of all, mindfulness is about experiencing the current time, not reminiscing about the past or planning the future. I’ve used these techniques before but it is much easier with a group. The challenge is to incorporate the practice into each day and to start to feel more in control of the situation (i.e. the foot fracture) than I did before.
What a month! Number of medical appointments: 13, not including blood tests. Seeing specialists covering osteoporosis, rheumatology, dentistry, urology, podiatry, chest physiotherapy. Not forgetting fracture clinic and the GP. No wonder some people have asked if I work at the hospital! Now I have another specialist to add to the mix: the haematologist. It turns out that my neutrophils (a type of white blood cell) are consistently lower than they should be. I’m trying not to think about it too much but it is a bit worrying. This may well be linked to taking a biologic drug (Enbrel) for rheumatoid arthritis, as when I’ve had to come off this medication (e.g. during a chest infection) my neutrophil level has gone back up. It’s a matter of waiting and seeing at the moment. Sometimes it feels like I’m on a continuous loop of investigations and tests. It would be good to step off that conveyer belt for one week!
On a positive note, a recent MRI showed that the fracture in my right foot is healing gradually. After two months in an aircast boot and on crutches, I’m getting around a bit more easily. As I said before, it’s amazing how talkative people are when you’re wearing an aircast boot. It does look rather dramatic – as if I’ve broken my leg rather than one bone. Every day people regale me with their story of breaking a bone or without asking how I sustained the injury. Most of the time I don’t mind – but sometimes it can be exhausting – so then I just smile and say ‘long story’. In the early days, around three people a day thought I’d been skiing! The healing process does take longer – thanks to osteoporosis and Ehlers-Danlos syndrome. I can’t wait for the boot to be off in a few weeks’ time and celebrating afterwards!
The podiatrist knew there was something wrong with my right foot immediately. It was hot to the touch, skin reddish, and swollen both on top and on the sole of the foot. My foot had been painful for some weeks but I attributed it to normal EDS and RA joint pain. Some days were worse than others. I started limping and regularly felt a stabbing, burning pain searing into my foot when walking.
So I was relieved to have an appointment with the podiatrist. They were going to fit my shoes with new, custom-made insoles. In the end, that didn’t happen. The podiatrist insisted on the rheumatologist assessing my foot straightaway. An x-ray followed which showed a fracture on my 3rd toe of the right foot. Looking at the x-ray was upsetting. Even though I had the evidence in front of me, I still couldn’t quite believe it. Nothing dramatic had happened. I had not been walking more than usual.
Now my foot is strapped up inside an AirBoot for 6-12 weeks and I have to use crutches. The rheumatologist said that I could be ‘partially weight bearing’ which makes a bit less daunting to get around, but it is still hard work on my arms and shoulders with the muscle wastage from RA. One cause for the foot fracture could be osteoporosis. Despite taking weekly osteoporosis medication and vitamin D daily, I have also torn two ribs. Balancing keeping active with minimising the risk of future fractures is going to be hard. It would be useful to know what more I could do to prevent more broken bones. Who wants to feel (or be treated) like a china doll? On the positive side, it’s amazing how many people offer me a seat now that my invisible conditions are seen as a visible disability. People chat to me everywhere – on public transport, at bus stops, in shops, in the road trying to get from A to B (slowly). A foot fracture is a minor setback for a few months but I don’t intend to let the fracture stop me living life to the full.
“Which arm would you like the needle in?”, the radiographer asked me before putting in a cannula. “Whichever has the best vein for it”, I replied. I had an MRI on my hips this morning and it involved having a contrast dye (gladiolinium) to show what is going on with my hips in greater detail. How is rheumatoid disease affecting my hips? As I was complaining of so much pain in my hips and knees, my rheumatologist had ordered an MRI but gave me the choice of having my knees or hips done. I chose the hips because they have been painful for longer than the knees and feel like honeycomb.
Having had MRIs performed before, I knew what to expect. Once I had the needle in my arm (for the contrast dye which was administered near the end of the scan), I lay down on my back with a heavy ‘tray’ laid across my pelvic area. Ear plugs and headphones blocked out the noise from the machine. At first I felt a bit panicky and claustrophobic in the tunnel-like machine. Steeling myself for the next hour, I decided to focus on the classical music I’d opted to listen to (you could choose from a ‘menu’ of artists including Adele, Jamie Cullum and Eminem, amongst others!). Although it was quite hard to hear the soothing music above the persistent loud ‘knocking’ sound of the machine, it helped to relax me.
The first half hour passed quicker than I’d anticipated, partly because I was so tired that I almost fell asleep. The radiographer’s voice came over the microphone: “You’re doing really well. We’re half-way through.” During the second half, I started to get uncomfortable and hot with the heaviness of the ‘tray’ weighing on my lower body but kept my eyes firmly shut. I told myself it would be over soon. With about 8 minutes of the scan remaining, the radiographer came in (they were sitting in a separate room behind a glass partition) to administer the contrast dye through the cannula. Then before I knew it, it was over. I could get up, have the cannula removed and change out of the gown. What a huge relief. I’ve no idea when I’ll have the results back, just happy to have got through this.
Ordering fruit juice at a bar always elicits curiosity. If I’m with a new group of people, one of their first questions is: ‘What are you drinking?’. There’s often an assumption that everyone drinks alcohol. If you’re not drinking, people want to know why. Friends know I don’t drink as it doesn’t mix well with my medication (Enbrel injections for rheumatoid disease and Actonel tablets for osteoporosis). But should I tell people I haven’t known long the reason why I’m alcohol-free? It shouldn’t be an issue. Lots of people (without chronic illness) abstain from drink for health reasons or because they’re into sport. Others might have addictive personalities and stay off booze. That’s their decision. I don’t judge others for drinking alcohol or not but I’ve noticed that some drinkers (not my friends) find it hard to have a ‘teetotaller’ in their presence. They crack jokes about ‘Needing to watch their intake’ and so on. I’ve explained that I don’t miss it and if I want a great substitute, I know an amazing alcohol-free wine that tastes and looks like the real thing.
Taking my reason for staying sober out of the equation, I feel much better without it. RA/RD and Ehlers-Danlos Syndrome make me feel tired enough already without adding hangovers into the mix! Being teetotal doesn’t mean you have to stop socialising. However, not drinking means more time to explore other activities that don’t revolve around a pub!
My rheumatologist did an ultrasound scan on my hands and wrists today. I was really worried about this procedure, as it’s been a whole year since the last scan and it feels (physically, at least) as if my body has gone downhill because of rheumatoid disease. Unexpectedly, inflammation levels have decreased markedly and the bone erosions seem to have stabilised. She’s going to prepare a detailed report but objectively, from what flashed up on the monitor, there has been an improvement in my joints.
So why did I get teary when I saw this? Because the results on the screen don’t match how I feel. Don’t get me wrong, I’m over the moon that Enbrel seems to have slowed down the disease. It’s just that it doesn’t make sense that the results show an improvement on last year, and yet I feel worse. My shoulders, elbows, knees and hips all ache continuously whereas last year it was confined to my knees and hips. Energy levels are still zero and my limbs feel heavy, almost as if they’re being held down by weights when I try to get up or move around. An added complication is that I already had Ehlers-Danlos Syndrome (Hypermobility) when I was diagnosed with RD/RA four years ago. My rheumatologist said that it looked like EDS could be affecting me more than RD/RA at the moment. I’m not totally convinced but nowadays it is virtually impossible for me to separate EDS symptoms from those of RD/RA.
The next step is an MRI on my hips which will give a fuller picture. I’m going to continue with the Enbrel (twice weekly injections), Vitamin D (1,000 International Units daily) and Risedronate Sodium/Actonel for osteoporosis (once weekly) for now, and will have another ultrasound scan in 6 months’ time. I’m feeling cautiously optimistic about the future. I recognise that I’m impatient to reach drug-induced remission. I need to be realistic and acknowledge that managing my RD/RA effectively may be the best I’ll get, but that won’t stop me being optimistic about getting to remission. I’m happy that I seem to be getting better and would like the chronic pain, fatigue and brain fog to lift magically. That’s what I thought would happen with the Enbrel, as I know it has with other people. Having said that, comparing myself to myself (rather than others) is essential, because RD/RA affects individuals so differently. Enbrel is making a difference slowly, so it’s time to celebrate this good news and keep moving forward.
Nearly a year ago I found out I have bone erosions in my hands associated with rheumatoid arthritis. I’m having another ultrasound scan in 4 days’ time to evaluate the current state of the disease. (Although I’m not a fan of the word disease, it conveys the seriousness of RA and its chronic, systemic nature). The thought of further bone damage terrifies me. On the other hand, it could be good news. Since June 2013, I’ve tried five different drugs to treat RA (and osteoporosis). Currently, I am on Enbrel injections (twice-weekly), Actonel (once weekly) and Vitamin D (once a day).
What I’m hoping for is confirmation that my bone erosions have stabilised (i.e. not progressed). I know that once bone damage has been sustained, it can’t be repaired, but you can prevent further damage happening if the drugs work. If it turns out I have more bone erosions in my hands than last year it will be distressing. I’m trying to stay positive until I know the results. Once I’m informed, my rheumatologist and I can jointly decide on an action plan to do something about it.