Superhero Walk

Regent’s Park yesterday was filled with over a thousand people running and walking 5km to fundraise for loads of different charities. I took part to raise money for Arthritis Research UK. Quite simply, without clinical research, I wouldn’t be on a biologic drug (Enbrel) that is starting to make a difference to my joints. From the start I knew that I’d walk, rather than run, the five kilometres. It was a baking hot day (25 degrees Celsius) but more importantly, my body isn’t up to running as I’m not in remission (yet).

Everyone taking part was entitled to a free Superhero costume such as Superman or Wonderwoman. You could either turn up and collect a costume on the day or make your own. I dressed as an old-fashioned Superhero – namely a Suffragette, complete with a white, green and purple sash, a hat adorned with ribbon, and a double-sided placard proclaiming ‘Votes for Women’ on one side and ‘Arthritis Research UK’ on the other.

As I’ve been doing regular training walks for the past three months (and the Enbrel is kicking in now), I managed the route in about 45 minutes. I deliberately walked quickly (despite having very painful hips and knees), partly due to the heat, but also because I wanted to complete the course in less than an hour. Along the route, I chatted to several typical ‘Superheroes’ who recognised my outfit. One excitable 10 year old boy shouted out, ‘You’re a Suffragette!’ Don’t get run over by a carriage’, which made me smile. Lots of people beamed in my direction and wanted photos, but there was nothing unusual about that as lots of us had snaps taken. Even though it was an exhausting walk and tough on my hips and knees it was an exhilarating feeling to cross the finish line. Apart from fundraising for Arthritis Research UK and raising awareness of rheumatoid arthritis/disease, the walk was about setting a challenge for myself and achieving it. Now it’s time to think of a new challenge!

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Good news

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.

Feeling apprehensive

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.

Rheumatoid disease or rheumatoid arthritis?

Rheumatoid disease is more descriptive than rheumatoid arthritis. These words capture its systemic nature and that it can affect organs such the heart, lungs and eyes. RA, by contrast, is too easily confused with osteo arthritis. Lots of people, upon hearing I have arthritis, say, ‘Oh, I have a bit of that in my knees’, or ‘My mum has that’. Questioning them further, it turns out that they have osteo arthritis. When they find out what RA/RD really involves, people often look surprised. Many people don’t know the symptoms and the reality of what it’s like living with RA/RD. I’m pleased that the National Rheumatoid Arthritis Society’s RA Awareness Week 2014 (16th-22nd June) has ‘invisible disease’ as the focus, as its hidden nature is a huge part of the problem when it comes to public perception.

Until recognition improves, I’m going to continue using both rheumatoid arthritis and rheumatoid disease in conversation. Media coverage of RA/RD should focus on the fact that drug remission is possible, although it may take years, and that lots of people can successfully manage their condition with the right treatment and support network (from friends, families and health professionals). Having said that, it’s also important that health professionals tell RA/RD patients about potential side effects from medication but this shouldn’t be done in a ‘doom and gloom’ way which makes people too scared to take the drugs. The key message is that the benefits of taking the medication outweigh the risks. I had no idea what would happen to my joints if I continued without drugs (I had a 7 month hiatus from them), because no one had ever properly explained what could happen and I didn’t know I had erosive RA. That all changed when my GP said ‘Your joints will crumble if you continue this diet-only approach’. I also think that talking to others going through it is invaluable, whether in person or online. Sharing stories and encouragement has really helped me and I’m sure it’s helped others too. In an ideal world, there would be no need for an RA/RD Awareness Week, as everyone would know what it is, how its treated, and that remission is a distinct possibility.

Osteoporosis shock

Osteoporosis isn’t normally linked with younger people. Most people tend to think it affects post-menopausal women, and to a lesser extent, older men. The reality is different – as I found out last week. Having had a ‘borderline osteoporosis’ diagnosis for the past few years, it came as a shock to hear that it’s now full-blown in my spine (but still ‘borderline’ in the hips).

‘Borderline osteoporosis’ had given me a false sense of security, the feeling that perhaps it was reversible and could be held at bay for a while. Instead, I face the prospect of another heavy-duty medication. On the positive side, I’ll only have to take Risedronate (Actonel) for 3 years to prevent the risk of bone fractures in later life (that’s if there are no side effects).

Last week, I had two ultrasounds on my left abdomen. The first was inconclusive but the second showed I had two old tears in the 10th rib. That explains the agonising pain since last September! It had been dismissed by several GPs on various occasions and I’d had to insist for further tests. It usually takes 6 weeks for this type of injury to heal, but my fractures are 6 months old. This doesn’t surprise me as Ehlers-Danlos Syndrome is associated with poor healing. The final set-back last week was being unable to have Enbrel due to a viral infection. I was gearing up to self-inject, only to be told by the specialist nurse that I’d have to wait. I never thought that I’d be looking forward to having an injection! Roll on next week and actually being able to do the whole injection in one go.

Enbrel excitement

A few months ago, self-injecting Enbrel was the last thing on my mind. The idea horrified me. I can’t even watch while the Phlebotomist takes my blood, so being able to inject myself with etanercept seemed a distant possibility. Fast forward to March 2014, and the situation has changed. Now I see it (learning to self-inject) as an exciting thing as it will give me more independence. This change in attitude didn’t happen overnight. I started to get fed up with the amount of time that I’m spending in hospital (varying between four and seven times a week at the moment – and two of those appointments were related to my Enbrel injections). Rather like learning the ukulele (!), I think of self-injecting as a skill that has to be broken down into manageable chunks rather than trying to do it all at once.

Some people are able to inject themselves straightaway – good for them. But it’s unhelpful to compare yourself to other people. In my case, with a history of PTSD and health anxiety following an allergic reaction to the first rheumatoid arthritis drug I tried, followed by side effects from the next four medications (including Enbrel), it hasn’t been an easy process. For ages, I hadn’t even contemplated self-injecting. It was enough of an achievement to get to the clinic and have the injection. Having said that, just in the past two weeks I have learnt how to a) remove the grey syringe lid (no mean feat when you can’t grip properly), b) gently push out the air bubble and c) plunge the needle in at a 45 degree angle to my upper thigh (while pinching the skin). My specialist nurse had to push the plunger to administer the drug. However, I felt a real sense of achievement from getting this far. Next time, I hope to be able to do the full procedure. I didn’t do a, b and c all in one go – but learnt a new skill at each appointment. My fears have subsided. It wasn’t as painful or as hard as I anticipated. I thought it would be a nightmare watching myself do it (as you can’t look away) – but it wasn’t. Hopefully I’ll soon feel able to self-inject without the nurse present. This is exciting. More opportunities lie ahead (such as working and travelling again) and I can’t wait.

Accepting the Liebster Award!

ImageI was really touched to receive a nomination for the ‘Liebster Award’ – thank you to Julie at Julie’s Spoonful of Sugar. I’m sorry it’s taken me so long to accept – lots has happened over the past month – including starting Humira which didn’t go entirely to plan. I’ll go into all of this in another post.

Julie, your description of the Liebster Award was so great that I hope you don’t mind me reusing it here:

Info About the “Liebster Award”

The Liebster Award, or “the favorite blog award”, is an internet-based award that is given to bloggers by other bloggers. In Germany, the word “liebster” has the same meaning as “favorite, beloved, or dearest.” This award is primarily given to blogs that have less than 200 followers. That way, it helps the blogger with being more known to the world as well as giving the blogger the opportunity to learn about more amazing bloggers.

If you are nominated for the “Liebster Award”…then what??

If you are nominated for the Liebster Award, these are the following steps you need to take in order to graciously accept your award…

1. Link back and recognize the blogger who nominated you.

2. Answer ten questions given to you, by the person who nominated you.

3. Nominate ten other bloggers for the award.

4. Create ten questions for your nominees to answer.

5. Notify your nominees.

And lastly, you may copy and paste the award (which is at the top of this post) on your blog!

So, here are the 10 questions that I’ve been asked by Julie, and my answers:

  1. What is your earliest childhood memory?
    Playing with other children in a paddling pool at nursery, aged 3
  1. If you were an animal, what would you be?
    Good question, I’d have to be a dolphin!
  1. What was your first car?
    The first (and only car I’ve ever owned) is a Ford (I think it’s a Focus)!! It’s purely functional and it’s with my mother now in my home town as I can get everywhere easily with public transport in London (especially if I get a seat).
  1. What is your current obsession?
    Learning the ukulele. I’ve only had one lesson so far but loved it. Playing it distracted me from having swollen and painful wrists.
  2. What are your top three favorite hobbies or activities?
    1) seeing art, whether in a formal exhibition or street art 2) going to concerts & gigs 3) going for coffee & cake with friends. When I have more energy I’d like to branch out and do more!
  3. What is the color scheme in your living room? Unfortunately it’s white, as we rent rather than own the flat, but I’ve livened it up with paintings including a Tuscan scene with warm tones.
  4. Do you consider yourself an auditory, visual, or kinisthetic learner? I think I’m an auditory learner, as I love trying to learn new languages and musical instruments, as well as being fascinated by words and new facts (although I’m passionate about the visual arts too).
  5. What one event has most influenced your life? Volunteering at a kids’ club in the local Women’s Refuge when I was 15, especially dressing up as Father Christmas as no men were allowed in the building and no one else wanted to do it. As a result, realising I wanted to keep trying to ‘make a difference’ in the world, which sounds corny, but it’s true.
  6. Do you prefer salty or sweet snacks? I have a sweet tooth so would always go for those snacks first.
  7. What random act of kindness by someone took you most by surprise? That’s a really hard question to answer! There have been quite a few – a recent one that stands out is when a complete stranger found me in distress (having bronchospasms due to a reaction to a drug) near a hospital canteen, then accompanied me to the emergency waiting room, and stayed with me until I was seen by a doctor. It was so kind of her.

I’d like to nominate the following 10 nominees for the Liebster Award (cue drum roll):

  1. Cecilia’s Diary
  2. Chronic Rants
  3. Our Life with Ehlers-Danlos Syndrome
  4. Beating Rheumatoid Arthritis
  5. An Angel with Wings
  6. Living with RA: the Rite of Aging…Early
  7. Defying the Odds
  8. Radiate Hope
  9. justanotherspoonie
  10. Misdiagnosed me…advocating for others like me

And the questions that I’d like to ask the wonderful nominees to answer:

  1. What was your most memorable holiday?
  2. What advice would you give to someone with a new diagnosis?
  3. If you could live anywhere, where would you choose?
  4. Who inspires you the most?
  5. What is your favourite music? (type or artist)
  6. How would you friends and/or family describe you?
  7. If you could wear an invisible cloak for the day, what would you do?!
  8. If you could star in a film, which one would you pick?
  9. What is your favourite quote?
  10. What is the most outrageous outfit that you have ever worn (to a fancy dress party or any other time!).

That’s it – thank you again Julie from Julie’s Spoonful of Sugar for the nomination 🙂 and thanks to anyone who has ever read or commented on this blog. After a tough month, I’m ready to get stuck into blogging again.