A Nice Day

Baby Cuddles, Friends and Lemon Cupcakes.

‘Nough Said.

L

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Feeling Stuck in a Rut

Christmas has always been my favourite time of year but, as it’s also a time of reflection, it comes with its difficulties too this year – one of which being that not much has changed this past year and so I increasingly feel stuck in a rut.

This time last year, I was struggling through work and spending most of my spare time sleeping in order to recover.  The systemic symptoms started to show through more and more – fevers, rash, lack of appetite, chest pain, confusion and lethargy. I was admitted to hospital on the 16th December – 23rd December and then again at the end of January and we’ve been trying different medications to get me back on track ever since: Cellcept (Mycophenolate Motefil), Imuran (Azathioprine), back to Cyclosporin and Enbrel, then Methotrexate and Abatacept (Orencia) and now Tocilizumab (RoActemra) and Methotrexate.

Needless to say I haven’t been to work; in fact it has been difficult to do anything. One whole year of not really achieving anything, of watching everyone else carry on with their lives and just waiting to get something akin to normality back. On a day to day basis it doesn’t seem so bad – you have little choice when you wake up unable to move, or with no energy to get much done; instead, you just do what you can. But looking back on a whole year, well that makes things seem quite scary.

If I think about things too much, I start to panic. I have an idea of what I want in life but suddenly it seems like there is a vast space between myself and my goals or desires. This ‘space’ has been there before and fortunately, it shrank to an achievable scale for the years when I was relatively well – things seemed possible again – but the past year has opened it up again and I feel stuck in the huge rut.

I try and console myself that everyone goes through something similar; for all sorts of reasons, people’s lives don’t live up to their expectations or go astray. I guess there just seems to be no end to this in sight for now, but it will come.

L

 

 

 

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Well I’ve Felt Better…

Sorry for the lack of posts recently; I haven’t been feeling too good at all and so am unable to put my mind or hands to much blogging. Ironic that when you have the most need to write about things, you are are least able to do so.

I’ve been spending most days propped up on pillows on the bed, unable to manage the stairs until late afternoon / evening when my second lot of painkillers kick in. This knee and hip just don’t want to budge and the pain in my lower back seems to be getting worse as a result of moving awkwardly. The left elbow is also locking up again at an angle, making tasks such as chopping food difficult.

Tramadol takes the edge off it but I’m still struggling and have resorted to using a home TENS machine as well. This is good for muscular problems (like my back) but hasn’t really helped my joints.  I had hoped to hear from my GP about changing my pain relief, but he has been away this past week. I have an appointment to see him on Tuesday though at least.

Until then, all I can do is as little as possible!

L

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Wednesday Whinge

Wow, I really have overdone things.

I’m back to struggling in the morning today and had to leave dressing / showering until after 12.00, when my painkillers had taken the edge off the pain and stiffness. Knees, hips, elbow, shoulder and neck are all hurting and I’m starting to feel some lower back pain, possibly as a result of sitting and moving awkwardly or compensating for the wonky joints. The knee has obvious swelling and the elbow is looking deformed again, but I’m trying to hold out until 8th December to see my Rheumy.

The cold might be adding to the problem, although my temperature seems to be all over the place. I feel freezing one minute but as soon as I put the heating on or wear extra layers, I burn up and start to get all clammy. I’m absolutely shattered too, so I think I will just do as little as possible and hope it passes once I’ve recovered from the weekend.

It was about this time last month that I thought I saw some improvement after the Tocilizumab infusion, but no such luck this time. I still don’t understand how my results are looking better when I feel like this. Things are never straight forward with Still’s Disease!

L

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Wave Goodbye

I just waved my Cornish friend off on her journey home; she stayed with us for a couple of days and they flew by. I was sad to see her go, but at the same time I am absolutely exhausted and the first thing I’m going to do after writing this is have a nap!

Yesterday was a lovely day; we had a lazy morning drinking tea in our pyjamas and having a catchup on everything (reminiscent of our days at university) and when my painkillers had kicked in enough to allow me to walk comfortably (ish) we caught the bus to the village and had more tea and a cake for lunch, before wandering around the little shops and gallery. We were out for a couple of hours and it made a nice change to my usual daily routine, especially with it being a nice sunny day.

I had some time in the afternoon to recharge my batteries, while we watched a film and then she helped me to colour my hair (something I haven’t been able to manage on my own) and turned it into a makeover of sorts – much needed too! In the evening we went out for a meal and then just had time to listen to some of her tales about weird Al Yankovic and Brian Cox before calling it a night.

This morning was a struggle, but I managed to get myself up and hobble to the bus stop with her to say goodbye and wave her off.  Yes, I feel exhausted but it was worth every second and every spoon.

I’m off now to try and recover some,

L

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Time With Friends

Despite a few wonky joints and pains, I’ve been feeling reasonably ‘well’ the past few days (and I use that word cautiously, since I am by no means swinging from the ceiling etc! – just that compared to some of the rotten days I’ve had, these didn’t feel too bad).  So anyway, for once, I have been able to look forward to the weekend and to seeing a couple of friends.

Today, I went to watch my local football team ‘not win’ again, although for once they also didn’t lose – it was a draw. It might not sound the ideal pastime for a winter’s day, but I have invested in some thermal goodies and will be adding to my collection as the weeks go by and the days get colder! I was actually quite snug and warm; my only problem was needing some extra leg room because I can’t bend my knee very far, but I managed and it was worth it for the homemade pie and chips we tucked into afterwards.

I was home in time for X-Factor (and Craig’s shocking exit – fixed!) and then it was time for bed. My Cornish friend is travelling from Cumbria to stay with us tomorrow and could arrive quite early, so I need to get as much sleep as possible beforehand. I haven’t seen her since our friend’s wedding and so we’ll have lots to catch up on. Should take my mind off the aches and pains for a while too 🙂

Goodnight,

L

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Articles: Two Cases of Successful Still’s Disease Treatment With Tocilizumab / RoActemra

It was nice to see a few of articles addressing Still’s Disease these past two days; I’ll post links to them here but, as always, they can be found in the Articles section too.

The first article  addresses the news that the safety and efficacy of Tocilizumab has been found to be sustained at the two year mark, meaning that improvements seen in the initial trials were still felt by the patient after two years.

The second article is the story of a young Australian girl with Still’s Disease, who has found some relief with Tocilizumab.  The drug was only approved for use in children this month in Australia; they can now access the drug on compassionate grounds, but adults are still waiting for the drug to qualify for subsidy and can only access it privately.

Lastly, is an article about a young woman with Still’s Disease, who has also been given a new lease of life thanks to Tocilizumab.

Certainly seems to be the drug of choice right now.

L

 

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Twelve Weeks Post Op Appointment

It’s about twelve weeks since I had my Hidradenitis surgery in August and time to see the surgeon again, for a check up on the wound and also the second site, which may need similar surgery.

We arrived at the hospital in plenty of time for my appointment, but it was only after a two hour wait that I finally went in and saw the surgeon.  He was pleased with how my wound had healed (almost completely now) and as I suspected, felt that the second site would benefit from the same procedure as it is already creating tough scar tissue around the tracts, which is uncomfortable, an infection risk and also unsightly.  Okay, surgery does leave a scar but I’m surprised at how neat the first one has turned out and hopefully it will fade in time, meaning that’s much preferable to what was there previously. I just hope he does an equally neat job this time round.

I’m not exactly looking forward to having an open wound again, going through the daily clinic visits and so on, but it’s better to get it out of the way all in one go rather than put it off; plus, if I did put it off, it would probably need more extensive surgery. So, I read through the consent form and will receive a pre-op assessment date in the post shortly. I hope it’s after Christmas at least.

For those that are interested in how these wounds heal, here are a couple of more recent photographs.

At 10 weeks and 12 weeks

You can compare these pictures to those taken at three and six weeks as well as a list of related posts, here.

L

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A Confusing Email

After missing my Rheumatologist at my infusion on Thursday, it was nice to find an email from him in my inbox this afternoon. He said that my recent test results were much better than they’ve been for a while now, which would be great news if only it reflected how I feel! The fact is, my joints have been feeling pretty terrible – with the ‘usual’ left shoulder and elbow pain / restricted movement, swollen right knee, sore neck and awful pain in my hips that makes me queasy.

So I don’t understand how my blood test results are improving!

Is my body just a bit slow on the uptake?

Hopefully, it is a good sign though, especially with the brief improvement I had after the first infusion. My theory is that once it builds up in my system a bit more this improvement will be more noticeable and long lasting. The drug is obviously having some effect on my body if my blood is showing changes that it hasn’t done before?! Many people with Still’s Disease receive Tocilizumab once a fortnight rather than four-weekly, so perhaps this is an option to consider too.

He also said he’d be happy to see me in clinic if I felt I needed my knee injecting… but now I’m even more tempted to struggle on a bit longer, in case I see some improvement with the Tocilizumab. Otherwise, I might get a false impression of what’s going on joints-wise. Of course, if things get too bad, I’ll be straight on the phone to him because I don’t want to do more harm than good.

L

Edited to add: I’m sure I have a bit more movement in my knee again, I seemed to be managing steps much easier this evening. Fingers crossed!

 

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New Knees Please

Between the ages of 15 and 19 my knees were the joints worst affected by inflammation, pain and stiffness; they would swell up to the size of a small melon, red and hot, and because of the fluid surrounding the joint cavity I wasn’t able to bend them.  My rheumatologist at the time would drain this thick yellow fluid each time, before injecting the joint with cortisone – an uncomfortable procedure for anybody. It wasn’t long before I was having this repeated in both knees every 4-5 weeks, (more than advised) and over the years doctors suggested that I would probably need the joints replacing before the age of 25.

Luckily for me, after four years of this I had to switch to my current Rheumatologist, who managed to get things under control quite quickly and from the age of 19 I didn’t have any trouble with my knees, apart from being unable to bend them fully or kneel down – but you learn to adapt to these restrictions until you barely notice them. At least I avoided the surgeon’s knife for a while.

So when the right knee started to swell and stiffen up again a few months ago, it seemed an obvious sign that things weren’t too good on the joints front. I had the knee injected before my break in New York, as I didn’t fancy hobbling along the busy streets and struggling with all those stairs, but less than a month later it was starting to swell again and has remained swollen ever since. It is painful but the worst part is not being able to manage stairs normally; instead, leading with my other leg on every step and pulling the wonky one up behind – a slow process that I’m worried will leave me with a massive, muscley left leg!

I did have a couple of days relief about two weeks after my first Tocilizumab infusion, when the swelling and stiffness went away on its own, but this was only temporary and it soon returned. On Thursday, when I went for my second infusion, things had become so bad again that I felt I needed another steroid injection in the joint but – sod’s law – my rheumy wasn’t there to do it! I’m sure if I rang and told him how things were he’d fit me in to one of his clinics, but I’m wondering whether it would be better to give the Tocilizumab a chance to do its stuff?

But Santa, if you’re reading – for Christmas, I’d like some new knees please….

…and hips,

…and an elbow

…oh and one shoulder too 🙂

Thank you

L

 

 

 

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