New Year Update

Hi everyone

Happy new year! This year so far has been a bit of a busy one for me, hence my first post of the month being on the 18th of January!

Before I start, I would just like to acknowledge the late Alice Pyne. It was so sad to hear that she had passed last weekend. She was an inspiration to so many people and she showed that just because you have been diagnosed with an illness that you will have for the rest of your life, doesn't mean that you have to dwell on it. She also showed the power of using your illness to help others, which is what I am trying to do. RIP Alice.

So since my last post, I have reduced my steroids down to 2.5mg (I'm nearly off them!). Although, I have started to get pain back in all of the places I did before, so I am wondering if I will need to go back up to 5mg :( I am at the Rheumatoid Arthritis Doctor (Dr Wood) next week so hopefully she will advise me with what to do next. I've had to start wearing my wrist support occasionally again, I am struggling to get my arm above my head because of the pain in my collar bone, my feet are quite sore when I walk and most annoyingly, my fingers on my right hand are swollen and painful again. It feels like I am taking a step back, but I hope that Dr Wood will be able help me.

My appointment next week is for my 3 month check up from my first appointment... In August!! I was diagnosed at my appointment in August, then Dr Wood gave me a steroid injection that was to last three months and then she would see me again once I had started on my medication. Well, I finally received an appointment in the post in December for January 11th at 12pm, in Kendal! I had to ring up and rearrange for an appointment in Ulverston, otherwise I would have had to take pretty much the whole day off. The problems I have had with getting appointments has been ridiculous!

On a more positive note, I went to my monthly clinic with the Rheumatologist nurse this week. My blood test results showed that during the week that I was ill in December, my inflammation count shot straight back up to when I was first diagnosed with RA, so it was four times higher than the week before. Luckily my next blood test showed that it started to go back down again after that, so it was just down to me being ill. But other than that, my blood results showed promising signs, which means that I have now been passed to my GP and no longer need to go to the monthly clinic. It also means that I only have to get my blood tested once a month now rather than every two weeks which is also great news!

I am still on 6 pills of Methotrexate once a week, which I am pleased to say still aren't causing me too much trouble. I do tend to feel a bit dizzy and sometimes a bit sick on a Wednesday, but nothing too horrendous!

MTX Week 4 & Pride of Britain

Hi everyone

So, once again its methotrexate Wednesday, meaning the 5am wake up call included 6 MTX pills today. I still haven't noticed any side effects, which is great and since this is my fourth dose I'm hoping to start to see some improvement soon.  

I have also now started on a new medication omeprazole, as my heart burn from the steroids was starting to get unbareable and making me throw up all the time. Rennies and Gaviscon were my first point of call, as I really didn't want to be taking another pill, but when they made no difference I backed down and rang my GP Dr Wilkinson. She really has been very supportive and brilliant with me, and she prescribed omeprazole straight away in a rush at 5.30pm on Friday so that I could start on it immediately. Even though I didn't want to add to my long list of pills, I have to admit that they started to work the very next day and I now am heart burn free!! It's just annoying that I am now having to take more medication to reduce the side effects of other medication!

I used to take extra strength cocodamol before bed to help me sleep through the night, but I decided to stop this over the weekend to see if I still needed it. Turns out that I am still sleeping as well without it, so no more cocodamol for me!

I have aslo decided to stop taking ibruprofen in the morning, as not only is it a prime culprit for causing heart burn, I don't want my body to become to reliant on such a cocktail of medication. Since stopping the ibruprofen I am in a bit more pain in the morning, particularly in my hands, and it takes me longer to loosen up throughout the day. But its not causing me enough pain to make me desperate to take pain killers. so for now I am staying off them!

What I also really wanted to talk about on my blog today was the Pride of Britain Awards that were televised last night, and in particular, one of the winners Alice Pyne. Alice is 16 and has terminal cancer. Rather than be defeated, she has decided to create a bucket list, with her number one aim "To get everyone eligible to join a bone marrow register". Her blog documents her life and progress with her bucket list. She knows that there is no getting rid of her illness, but she has decided to do everything she can to prevent others from getting in the same predicament. So far, she has inspired 40,000 people to sign up to the bone marrow register.

Alice Pyne - an amazing young lady

This really struck a chord with me last night, not only because she is so inspirational, or because she is from Ulverston, which is where I work and 20 minutes from my home town of Barrow, but also because she demonstrated exactly how powerful a blog can be in raising awareness.

The aim for my blog is to have a place for young people to turn when they are diagnosed with Rheumatoid Arthritis. I plan to document everything I go through in terms of medication, side effects, relationships, lifestyle changes and so on, so that other young sufferers have some idea of what to expect. 

When I was diagnosed, and still to this day, I struggle to find anything about young sufferers with RA. It is a scary time when you are only at the start of your life, and you suddenly lose control of how it is going to go from now on. I'm still at the start of my journey, so I'm in the dark about what is going to happen over the next year, I have no idea if I will get to a point where I can walk down stairs without pain, or if i will ever able to use my hands again properly. So hopefully, I can build up a fairly detailed diary of what happens next, and this will help others. 

Please help me spread awareness of this blog and pass it on to as many people as you can.

Thanks :)