Day 25 - Toc Time Again

I have an infusion every 4 weeks.  The drug is called toculizumab and is part if the biologics family of medications.  These drugs have changed peoples lives and have certainly changed mine.  I've been on several biologics over the last 11 years, all with different degrees of success, but this drug is the one that has had the most impact and has made me feel the most human.

The infusion takes around and hour and, so far, I've had no side effects.  I have to have bloods done just before the infusion just to make sure I'm well enough to have the drugs as it's quite powerful.

I've had a bit of a rough day at the hospital today.  Whilst the nurses were dong their usual checks my blood pressure was very high.  The nurses were unable to start the infusion until my blood pressure came down and unfortunately it didn't.  The nurses called the doctor in to see me and he asked a few questions about my surgery.  He decided the blood pressure was due to the pain in my knee and also the fact that I take steroids and said it was ok to go ahead with the medication.

Unfortunately the infusion was stopped halfway through because I had a very dry throat and a bit of a cough.  The nurses were reluctant to start it again as my blood pressure was still far too high but they eventually decided that I'd be ok to have the last few mls.

At the end of it all my blood pressure was still high so I had to wait, the nurses wanted me to stay in hospital over the weekend which I didn't really want to do.  Thankfully, after a while, my blood pressure came down and I was able to leave the hospital.

So today's photo is my infusion site.  Not for the squeamish but this is my life.

Day 7 - Torture

This is the physio equipment that has been the bane of my life for the last 4 days. I'm not sure how some blue equipment can put such fear into me every few hours.

Day 6 - Battered

Here comes the bruising.

Hospital time again

I'm having my knee replaced tomorrow. It's my second knee but my fifth joint replacement. As you know I have a new finger joint, a knee, a hip and a shoulder.

I'm not too nervous, I've done it too many times before. I'm all packed up and ready to go. I've done a spot of sale shopping with my neighbour today so I'm quiet tired tonight, I'm hoping I'll be able to sleep well. See you on the other side.

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.

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!

One week to go....

Well it's one week until my operation and I'm on countdown.   I've been on a countdown since I got my date two weeks ago but with Christmas and New Year in between it's felt like a long way off.

I've got quite a lot to look forward to in the next week so this week will roll round quickly.  All will be revealed over the next week.

I've been thinking about what I can do and if I need anything to take into hospital with me.  I've been advised to get some big pyjama tops which is easy enough if you're a size 10 but if your a little bigger it's not that easy.  However, my mum found a couple of big nighties in The Co-op department store in Stafford.  I don't know what they look like or of they're any good but we can try.

I'm not sure if there's that much I can take in with me as I won't be there long and it's not like lower limb surgery where you need your whole life with you, well at least I do!

Shoulder News

So after all my waiting I finally have an appointment for my surgery.  I will be having the operation in the 4th January, 11 months after my initial appointment.

I'm so pleased. I think the rheumatology dept had a lot to do with bringing it forward.

So I have 3 weeks to get organised. Oh dear!

Physio Appointments and shoulder replacements

On Monday I had a physio appointment.  This was the first one I'd had in ages.  I was so pleased to be back in the proper physio department at the hospital.

A few years ago, those in charge decided that it would be a good idea to close the bottom of Cannock Chase Hospital and either sell it off or lease it out.  Of course patient groups we dead against it and decided to join forces and fight against the decision.  The groups (which included Cannock Branch of Arthritis Care) managed to keep the hydro pool open.  The physio department wasn't fully reopened when I went down into the gym after having my hip replaced it was in a sorry state.  I'm please to say that my appointment on Monday was in the physio department and it look someway to being back and up and running again. 

Anyway, back to the physio.  I've had a popping heel for the last few months and I was told that it's a little bit of tendinitis.  I have been doing a few exercises over the last few weeks and it appears to be much better but I had some physio just to make sure.  I was given a few more exercises and she said that she would refer me to a podiatrist just to have a look.  I'm just praying for no more surgery, I can't take anymore. 

Speaking of surgery I had a little blip this week.  I'm so frustrated that I haven't gone in to have my shoulder done yet and that I’m going through another Christmas with not only this pain, but not being able to move my arm.

Here's what’s happened so far:

You may remember back in February I was told I needed surgery to resurface my shoulder.  My Mum and Dad paid for me to have my first consultation with the surgeon and 2 x-rays as I was in so much pain I needed something doing as quickly as possible.  As I was already on the waiting list to have my hip replaced the surgeon said that I should have that done first and that he would do the shoulder surgery as soon as I was off my crutches.  I had my hip replaced on 5th April.  When I had heard nothing by about July, I telephoned the secretary to see what was happening and she said I wasn't even down as one of his patients.  An appointment was then made to see the surgeon again on the NHS in September, when I got there they hadn’t got my notes from the private hospital and nothing more was decided other than I needed the operation, which we already knew.  The problem is that the 18 week deadline now starts from the 2nd September and not from the original date of the 3rd February.  

I feel so let down by the surgeon when all other departments that I've had dealings with have been nothing short of amazing.  I’m not sure the surgeon realises how hard the last year has been for all of us.  I can’t eat, drink, wash, dress, go to the loo etc on my own, anything to do with that arm is useless as I can’t move my shoulder and they pain is excruciating.

Three weeks ago my rheumatologist did a nerve block to help me control the pain and it worked so he did it again yesterday after I phoned them in tears.  I just can’t believe they’ve just left a young woman to suffer like this for a year, my whole life feels like it's on hold.

Still Awake!

I met up with a few of my friends tonight and had a fab time.  I'm so tired and sore now that sometimes I don't think the pain and fatigue is worth the hassle of going out, but then I see my pals and realise that yes it is.

It's fair to say that my family are number one and without them I would be a lost soul.  My friends also mean a lot to me, they're the ones I can talk to when I feel I don't want to burden my family.

Tonight my good friend Helene told me that she thought I looked better and that 6 weeks ago she was really worried about me and apparently spoke to some of our other friends too.

I love Helene, she knows me so well.  She knew when I was down and I didn't even have to tell her.

The truth is that I have been struggling of late and I wasn't sure what the problem was but now I think I know.

Just over a fortnight ago I went to have my Tocolizumab infusion and also wanted to speak with my rheumatologist while I was there.  On my way to the hospital I though about the conversation over and over again.  I wanted to talk to him about my shoulder and just how debilitating it really is.

In the next week or so it will be a year since I lost movement in my shoulder and therefore a year since I washed my own hair etc etc...It is so debilitating and also very frustrating.