Shoulders and flare ups

It’s quite common for someone with arthritis to go into a flare after surgery and I think I might be about to have one.  Only this time I don't think it's got anything to do with the operation but I think it could be because I need my medication.

I have a Tocilizumab infusion every 4 weeks and I went for my last dose on 15th December, which means I was due my next one last Thursday.  Unfortunately, I can't have my infusion until 2 weeks after the stitches have been taken out.

The medication lowers the white blood cells and white blood cells fight infection, therefore isn’t a good idea to lower the immune system whilst trying heal.  This would be fine but my body is now feeling that it needs the medication.  I can always tell when it's time.  I sleep more and just generally feel achy and fluey, 2 really common symptoms of Ra.  My infusion is booked for 3rd February so not too long to wait now.

Wondering where I go from here

With this in mind I thought I'd tell you about the work I do for AC.

When I was 11 I went to a meeting at the Cannock branch of Arthritis Care with my Mum.  My friend Chris was there who at that point was looking into starting a group up for younger people.   In those days we had Young Arthritis Care, a sub charity which ran along side the main charity.

I didn't really have much contact with Chris and the others until much later when somehow I was asked to do some radio interviews on behalf of Arthritis Care and Chris sent me some information to help me through it.  My Mum, Dad and I took a trip to Bush house in London where BBC World Service is broadcast from...yes I was 15 and I was on BBC World Service!  The program was called Megamix and was dedicated to teenagers and the issues that affect them.  The program was broadcast to around 40 million people worldwide.  The interview was with a guy from Blue Peter and took around 10 minutes.  I could see my Mum and Dad's faces through the window to the side of the studio and I think they were pretty proud of me.  It all went very well and I was very pleased with how it went.

Over the next few years I was involved in Arthritis Care by doing some radio interviews for local stations including Radio Stoke.  I also sat on focus groups for YAC and went to positive future workshops with other young people with arthritis.

At 16 Chris got back in touch with me and asked if I would like to become a member of North Birmingham Young Arthritis Care, a new group which she and another friend Nikki were trying to set up.  I became a member and soon joined the committee.

At 17 I became a local contact for young people.  I didn't like doing this very much and really wish I hadn't taken it on.  I suppose I'd been talked into it really.  I never felt like I did that much as I was always at school when anyone called, I don't think they realised how old I was.  I always felt like I was letting Arthritis Care down when I couldn't manage stuff.  Whenever I went on a training course I always had to arrive late or fit it in around school.  It was a good job I could drive by then as I was able to go straight from school.  Sometimes I would have to take schoolwork with me any trying to fit it all in was really difficult.

As Young Arthritis Care fizzled out so did the contact role but I ended up joining the Regional Committee which I still do and I'm now the vice chair.

When I was at university I would often be asked to do media work.  One particular Wednesday in April I had a phonecall from Arthritis Care head office in London.  I was rather surprised when they asked me if I would like to go on GMTV to be interviewed by Lorraine Kelly.  I straight away said YES, absolutely.   As the phonecall ended I ran into my flat mates and told them about it, they were really excited.  The experience was just fantastic.  We filmed for what seemed like hours the following Sunday and my feature was on the TV on the following Tuesday.  It was great fun, I was obviously nervous because it was live but it was great all the same.  Calls to the helplines at Arthritis Care increased far more than they ever thought and I'm so pleased I did it, if I encouraged one person to pick up the phone and get some support that day then it was all worth while.

After I finished university I was looking for things to do as I wasn't well enough for full time work so I was asked by my old friend Chris I'd I would join the local committee again. I went along to my first meeting at Cannock branch and offered to take the minutes to help Chris out. I emended up being the secretary and have been doing it for around 6 years. I also write the newsletter along with my friend Seona. We also do a lot of awareness days at the hospital where we give out information to the public and tell them about our support group.

I hope my work doesn't come to an end as I feel I can be a value to others with rheumatoid arthritis.

Changes in Arthritis Care

Before Christmas I went to a rather sad Arthritis Care Meeting.

Arthritis Care, like many other charities are having financial trouble.  Charities rely on donations, legacies, sponsorship etc, and in this climate the donations coming in have dropped dramatically.

Our problem is that we're not a sexy charity, you can't die from it, and it's not a children’s charity, therefore not sexy.

A business plan has been drawn up which will hopefully pull the charity out of the deficit that we're in, but unfortunately some staff are to be made redundant.

Here is a link to a statement on the Arthritis Care website.

http://www.arthritiscare.org.uk/NewsRoom/Latestnewsstories/planning-for-2012

I'm obviously really upset for the staff members who work so hard to make a difference to the lives of so many people.  I feel sad that they, along with many others at this time, have had to go home and tell their families the news that they might not have a job soon.

Staff might rely on this charity financially but us volunteers rely on it emotionally too.  Arthritis Care has been in my life for such a long time I couldn't imagine not doing it.

Over the last 15 years Arthritis Care has been a massive part of my life and I have treated it like a job.

The best thing about volunteering when you have an illness is that everyone understands if you can't make it on a particular day because you’re not very well.  Volunteering gives me a sense of pride in the knowledge that I am helping support people in community when they’re struggling, something which I know most rheumatology staff at our local hospital value.

I know I would be sad if this all ended and I strongly believe that the NHS will have to pick up the fallout from patients who can't get to talk with anyone with living with arthritis or a musculoskeletal condition.  I believe that if patients don’t have anyone to talk to, who understands their situation, then their health might suffer.  People with any long term condition need to learn coping strategies or 'tools' to manage their condition effectively.  Also some people don’t like to talk to family and friends as they don’t want to upset them or they feel like they’re moaning.

I hope this isn't the end of the work I do, maybe it's a new beginning.  Whatever happens I'm always ready to help people with this condition, whether it is in person, at the branch meetings, on the Arthritis Care forum or on twitter.

And lastly, I would like to thank everyone, staff and volunteers for all their hard work and dedication in helping people with arthritis continue with their lives.   I hope the charity will continue to give others as much support as it's given me.

Billy

I'm afraid I have some rather sad news. Our beloved pet Billy the budgie passed away early on Tuesday morning.

He fell ill on Monday night and we did our best to keep him comfortable. My Mum and Dad stayed up with him and we think he died at around 3am.

He found us in April 2002 when he was flying round at my Dad's work. By morning he was hungry and exhausted so my Dad bought him home where he's been ever since. We advertised for his owners but no one came forward to claim him.

He's been all over the country in my Mum and Dad's caravan and he enjoyed a trip in the car very much, whistling all the way. He also enjoyed music and whistled along to whatever we had on or whatever was on the telly.

Some people laugh when you tell them you have a budgie. When our last budgie had to be put to sleep people laughed when I told them. The reality was, the hours leading up to going to the vets we're horrendous, no one would want to see their animal in that way and I'm sure they wouldn't have liked it if they were on the receiving end of their jibes. I wouldn't laugh if anyones pet is put to sleep.

Our home is a rather quiet and a sad place at the moment. My only thoughts are that we saved his life once when he was starving and had no one to look after him, we weren't able to help him again. But while he was here with us we made sure he had a wonderful life.

One week post op

Yesterday I had my dressing on my shoulder changed.  It wasn't painful but it did make me feel a bit funny.  The nurse said that it's a beautiful wound which I was really pleased about.  I've always been good at healing, I always attribute this to a good diet.  I think if I ate convenience food then I don't think my skin would be as healthy and heal as quickly.  My scar is bigger than I thought which I'm not too bothered about, my body isn't perfect but I think these scars are parts of me and are an account of what I've been through.

A New Year, New Shoulder

Well the operation is done and all over. I am now the proud owner of another lump of precious metal placed in my body, in the shape of the ball joint of a shoulder

Wednesday 4th January - Operation day

I arrived at the hospital at 7:30am and straight away was admitted onto the ward where I had to get into a gown and some sexy stringy pants ready for the op.  I was visited by the surgeon, the surgeons registrar and also the anaesthetist before going down to theatre.  I didn't have to wait long as I went down to theatre at about quarter past nine.  I was really relaxed until the anethatist tried to find a vein in my hand.  Finding veins are common problems for people with rheumatoid arthritis.

To cut a long story short he tried to get a cannula in the back of my hand but he didn't get the vein so he said he'd go into my foot.  Now I'm a tough bird, but I'm not that tough.  So he said he'd put me to sleep with the gas and put the needle in after I've gone to sleep which is what he did.

The operation was a shoulder resurfacing to replace the ball part of my joint.  It's an operation they like to perform on younger patents so as when it comes time to replace the joint again it's much easier to redo.

Recovery

When I woke up I was in a lot of pain.  I'm told I was crying but I don't remember any of it.  I remember the nurse asking me where the pain was and I pointed to my shoulder.  Straight away I was given a morphine pump, which I've had before, where you press the button to give yourself a dose of morphine through a drip (which was in the vain in my foot).  It's controlled so you can't give yourself too much.  After about half an hour I felt much better.

People were in and out of recovery throughout the day, but only one other patient had to stay in recovery overnight with me.  Unfortunately he was over the other side in the men's bit so I didn't get to talk to anyone but maybe thing was a good thing.

After a few hours I felt the cannula in my foot start to sting which apparently happens when it has popped out of the vein, so unfortunately I had to have another one in my arm.  Rupert the Dr came to do it and got my vein on the first attempt so I was rather pleased about that.

At around 2am I woke to go to the toilet (it was a different experience having upper body surgery as you can go to the loo, when you have lower limb surgery the toilet has to come to you!  My morphine pump had run out so I decided that I would try and manage without it and just take oramorph, which is oral morphine, which I did and I have managed without it ever since.

Thursday 5th January

On the Thursday morning, after almost 24 hours in recovery I was taken back to the ward where I was greeted by the other ladies who were staying in my ward.  They were lovely and I had quite a laugh with them, although I wished they'd have put their phones on silent.  I would hate to think that my phone had woken someone up when their recovering from an operation.

I started my physio but I only have a few exercises to stop my fingers, wrist and elbow stiffening up.  I'm not supposed to move my shoulder at all for the first 2 weeks.

I was also taken down to X-ray where I was able to have a quick peak at what it looks like.

Friday 6th January

This morning I woke with quite a bad sore throat.  I'd had it a bit before I went in but it was quite bad on the Friday.  I spoke with Dr Rupert and he had a look and said he would prescribe some antibiotics and take some swabs to check it wasn't anything nasty.  I was given two bags of an antibiotic which was an ordeal in itself as I had to have another cannula put in, this time the Dr couldn't find a vein.  I think he was really upset but I really wasn't bothered, he tried his best and he wasn't an arse about it.

Later that afternoon I was able to come home.  I was so excited to get home and have a nice cup of tea and my own bed.  I know that life isn't going to be easy over the next few months.  I'm doing everything with one hand and it's my dominant hand thats in the sling so everything is hard work.

This blog post has taken me almost 2 days to write due to me doing it one handed and I'm a little out of it at the moment so I keep making mistakes, welcome to drugged up Sally world!

Christmas and New Year

My friend Seona with our tree.

Christmas and new years was so much fun.  Just what I needed to get me set up for what I know will be a difficult start to 2012.

Christmas started early for Arthritis Care as we were asked of we would like to be part of the Christmas tree festival at St. Luke's Church in Cannock.  One of the menbers paid for a tree and we set about decorating it in pink, our arthritis care colours.  We featured in the local newspaper and raised a lot of awareness.

Snow in Sawbridgeworth.

On the weekend before Christmas, I made my way to see my friend Kim.  She had lots of Christmassy things for us to do including a Christmas quiz at a local working mens/phoenix club and it was really lovely.  There were people dressed up in all sorts of fancy outfits including turkey hats, Christmas ties etc, and I, of course wore my beautiful bauble earrings!  On the Sunday morning I noticed some rather large white flakes floating past the window and, of course, it was snow.  It didn't stay long but I did manage to get a photo before it melted.

I really enjoyed driving my new car to Kim's.  I normally would have struggled but I think the new car mixed in with several stops made the journey a whole lot better.  I stop for around an hour every hour.  I know this is a lot but I feel so rubbish if I don't and I want to enjoy myself while I'm there.

On the 23rd I went to Chasewater to see Santa.  I went with my arthritis friends who leads a Brownie pack.  We went on the steam train and I got the Brownies singing all the way.  After the train ride the Brownies went to see Santa while I sat and drank tea, I also ate 2 mince pies which did nothing for my diet.

On Christmas Eve I went to sing in Stafford to raise money for Katherine House.  I do it every year and we usually get a really good reception.  Later I went to meet my friends and was shocked to see my old school friend Gemma who lives in New York.  She will be getting married this year to a guy from the Dominican Republic, he is very much what I expect a New Yorker to be.  He's a lovely bloke who tipped a barman £2 after buying a whisky the last time he was here and couldn't understand why we told him not to.  I'm so excited about her wedding and I'm so happy for them both.

New Years Eve was wonderful.  I went back to my friend Kim's for an 80's party.  I spent a few weeks getting my outfit together and ended up with Madonna.  I had my hair done in Stafford before I left home and went on my way with as much coffee and salad as I could manage and plenty of stops along the way.

The party was at Kim's mum and dads house. Here are the characters we had at the party;

                                        
Adam Ant
Wonder Woman
Teenage Mutant Hero Turtle's (all 4 of them!)
Superman/Supergirl
Bananaman
A coal miner on strike
A space hopper
Boy George
Alice Cooper
Slash


We had a brilliant brilliant time.  It had been a year since myself, Kim and Amy had been all together and it was lovely.  We spent the next couple of days together before I had come home and get ready for the first hurdle of the new year, my operation.

Blog round up

This is the second Christmas I have been writing a blog and it rounds up an eventful year in the life of Sally.

I'm not sure if I've achieved what I set out to blog wise.  I had such a gap over the summer due to the problems with my phone.  I know it's no excuse as I could've gone on my laptop to post but it's just far easier on my phone.

Health wise, I had my hip replaced in April which made such a massive difference to my life.  I started on the drug Toculizumab which has helped to make the arthritis readings in my blood the lowest they have been in twenty years.  I feel like I'm able to get around a bit easier too.

Knitting wise I haven't done as well as I'd have hoped which is probably due to my shoulder.  I'm really hoping to get back into it once my shoulder has healed.

Knits I made were:

Blanket for my niece
Cardigan for my niece
Hat for my niece
Little sisters dress for knitty friends daughter MJ
Cloths and comfort bear for another knitty friend's little one
Little baby cardigan for the lady who does my nails
Gloves for Amy
Lots of flowers
Leg warmers
2 scarves
Socks for Dad
Crochet shawl
Sock yarn lace fingerless gloves
Lacy gloves

Holiday wise, I spent a week in the Maldives, went to Glastonbury for the first time, I went on a knitting holiday and went to Holland for a week on October.

Looking forward to 2012.

Being able to knit more
Shoulder surgery and being more independent
Going to see my knitty friend in Cumbria
Another trip to Malaysia
Going to New York for a friends wedding
Going to another festival
Getting fit

So here's to 2012. Happy New Year everyone.