Wednesday, 31 October 2012

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 :)

Wednesday, 24 October 2012

MTX Wednesday - Week 3

Well its Methotrexate Wednesday again already!

Today I had to increase my dose to 6 pills, giving me 14 pills in total to take this morning. Once again, I seem to have a bit of a dizzy head and I'm not feeling 100%, but at the same time I'm not throwing up or having to go to bed, so I can't really complain.

This is what I had to face at 5am this morning!

I also had my first blood test to check my liver functioning. I have to get this done every two weeks for the next few months, because MTX can cause liver disease among other things. So this morning I had to take myself up to the Path Lab at my local hospital (Furness General). 

Since the path lab opens at 9am, I thought I would get myself there nice and early and try to get in and out as quick as possible. But I arrived for 8:45am to find a large group of people waiting in the corridor. I got my queue ticket which said I was patient 14, so much for in and out! 

Just after 9 they opened the doors and let us in, so once I had handed in my queue ticket and blood test requirements slip at the reception I could sit down in the waiting area. I know I must have only been stood for 20 minutes, but I was desperate to sit down by this point! 

This is the slip I have to hand in at reception to tell them what I need to be tested for.
I ended up having to wait for about 40 minutes, but once I was called, the actual blood taking was quick and painless. I have had quite a few blood tests over the years, so getting it done never really bothers me anyway, but I have one or two experiences when the nurse cant draw blood, and I get turned into a human pin cushion! Luckliy this was not the case today!!

So overall not a bad experience for my first trip to the path lab, just a few pointers for the future:
  1. 15 minutes before is not early enough to be in and out - maybe I'll get there for 8:30 next time
  2. Take a book to read - it can be a long wait!
And as for the MTX, I haven't seen any improvement in my condition as of yet, but at the same time I haven't had any horrible side effects either. There's still a long way to go...

Monday, 22 October 2012

Low Days: How I cope

Hi Everyone

I've decided to write a post today about how I deal with "low days". I have found that since being diagnosed with RA, my mood seems to be all over the place. One day I can be my usual positive and chirpy self, and the next I can feel quite defeated.

I have noticed that my low days tend to be appear more at the weekend rather than during the week, which is usually the opposite for most people! I think it is because during the week, I have work to focus on and keep me occupied for the majority of the day. Whereas at the weekend, I wake up and think, "what can I do for the next 15 hours?". I used to enjoy going for walks, going to town, or generally just using the time to get things done that I hadn't had time to do during the week. But at the moment, since I can't stand for very long, walk very far, or really do anything involving my hands, I'm not left with many options!

That's why I have decided to make Sunday my pamper day. This means: a bath, candles, face masks, hair masks, nail polish, body scrubs, moisturisers, the works! Some may think that I am being superficial or materialistic, but the truth is, beauty products make me feel better.

Sanctuary body scrub and lotion - this smells ggorgeous but I thought that the scrub could do with more texture, I prefer a bit of a harsher exfoliator. I also found the lotion started to burn parts of my skin like my elbows?! Maybe its not ideal to use straight after a bath when your pores are open if you have sensitive skin.

Aussie 3 minute miracle hair mask - this also smells amazing, and my hair felt very smooth and conditioned after. Not bad considering you only need to leave it on for 3 minutes. I only used about 1/3 of the sachet too. Cant complain for 80p.
Garnier self heating clay face mask - I started to worry when I first applied it as you really do feel it starting to heat up within seconds. I have sensitive skin so usually if something feels warm on my face my first instinct is to get it off, but I left it for 3 minutes as directed and had no problems at all once I had washed it off. My skin felt nice and cleansed afterwards. This comes in 2 sachets, but I only used about 2/3 of the first one.

I think it is important for RA sufferers to take some time to do something that makes them feel good about themselves, because it is very easy to build up feelings of resentment and hatred towards your own body when it is attacking itself and causing you pain. I have thought to myself on quite a few occasions, "I don't smoke, I rarely drink, I eat plenty of fruit and veg, I was very active, so why is my body doing this to me?!". Also, you get sick of looking at your joints that are all swollen and ugly, wishing that they looked half normal.

But after my pamper afternoon on Sunday, I honestly felt one hundred times better about myself, and felt motivated to make sure this arthritis doesn't beat me. I will get back to some sort of normality!!

What techniques do you use to battle the RA blues? Get in touch.

Friday, 19 October 2012

Kayleigh's Give Away

Hi everyone :)

I just wanted to let you all know that one of my favourite bloggers Kayleigh is holding an International giveaway to celebrate reaching 2000 followers!

All these fab products are up for grabs!

If you like the look of these products and want to be in with a chance of winning, all you have to do is enter using the Rafflecopter widget on her blog. There is a link to her blog under my "blogs im reading" section, or you can click here.
I read Kayleigh's blog on a regular basis, I would recommend it to anyone and I'm not surprised she has managed to reach 2000 followers.  Have a look :)

Wednesday, 17 October 2012

MTX Wednesday - Week 2

Hi everyone :)

As today is Wednesday, it was time for me to take my second lot of Methotrexate (MTX) this morning. If you haven't read my first post, I started taking MTX last week to treat my Rheumatoid Arthritis. At the moment I have to take 3 MTX pills once a week, however next week this will be increased to 6 pills.

My Wednesday morning pills (The yellow ones are the MTX)
I was told that I would see no positive effects from the MTX for at least 4-12 weeks, however I may start to feel some unpleasant side effects right away. The nurse said it is pretty common to feel or be sick and to feel generally unwell for a few days, but she also went into detail about a large list of side effects including ulcers and hair loss. There is more information about the side effects here. I know they have to cover every possible outcome just in case, but I couldn't help feeling worried about what was going to happen when I took the medication! I have to take Folic Acid on a Saturday, which is meant to reduce the side effects of the MTX, so this gave me some comfort. But again its just another pill to add to the list that I have to take.

My medicine drawer - steroids, MTX, folic acid and prescribed extra strength pain killers.
I have to say that so far I haven't really had any side effects. I feel a bit dizzy, sort of like my brain is taking a second to catch up with my eyes, but other than that I haven't felt any different. I haven't been sick thank goodness, which is what I was worried about because I have a history of not being able to stomach any medication (even Penicillin). But it is only the second week, I wonder if the side effects will kick in next week when I go up to 6 pills... Did anyone else find that the first few weeks were relatively side effect free?