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Archive for August, 2011

There hasn’t been much to report since the surgery on Friday; I’m still on bed rest mainly, so as to keep my legs raised and help the healing process. The wound is currently repacked with Aquacel or Kaltostat every morning and then redressed, meaning a daily drive to the local clinic. It’s not the nicest experience, having someone prodding around in an open wound, but I had visions of it being much worse and I’m pleased to say the pain is only mild.

The first nurse I saw told me not to look, that they’d taken quite a chunk out of my thigh, so I didn’t. However, yesterday the nurse somehow managed to stick the dressing onto the wound itself, meaning that it peeled away and gaped every time I sat on the loo, giving me no choice but to face it. I made sure that the nurse this morning stuck the patch well and truly over the wound and taped it down doubly, as not only did it make me feel queasy seeing the gaping hole, but I was also worried about it being contaminated. I have had a wound infection in the past and it wasn’t nice; thankfully, this one is looking nice and pink, which I have been told is a good sign that it is clean and healing well.

I am not allowed to shower so am having good old fashioned flannel washes twice a day and my boyfriend washed my hair for me last night. He’s also looking after my little furbaby, Jasper, as I’ve been told to keep away from pets for a while; I’m sure I will have a very sulky bunny by the end of it. I think both of them will deserve a treat by then too, especially considering how close my squeamish bf came to passing out during the first dressings change.

Still’s -wise, everything is pretty much the same and being kept stable by the Prednisolone and painkillers. Tonight I am to make a couple of changes to my medication; firstly is to switch to Modified release Tramadol capsules, which I only need to take twice a day and should give me a more steady level of pain relief. Secondly, I need to double my dose of Methotrexate to 15mg.  This is still a lot less than I took when I reacted badly to it, but I’m still feeling a bit hesitant  – the ‘hangover’ side effects have gradually faded over the past weeks and now I have a feeling it will be like starting over, if not worse.

But that’s being negative and only time will tell.  I have to know that I’ve given the Orencia the best chance of success before giving up on it; this could be just the boost it needs.

L

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Sexy Surgical Stockings

It has been two days since I had the surgery to remove the scarred/infected tissue from chronic Hidranitis in my left groin and things are going okay. I still have to wear my lovely stockings and keep my legs raised, so I am in bed surrounded by books, Dvds, my laptop, phone, Kindle and DS just in case I get bored.

 

The pain isn’t too bad, a little bit worse today than it has been so far but I’m keeping up with the four doses of Tramadol a day.  What bothers me is how much blood is soaking the dressing, the patch gets bigger every time I look at and all I can smell is blood. I can’t wait to get it changed tomorrow because it makes me feel really grotty. At the same time, I’m dreading it because I know it will be uncomfortable, maybe even painful.

I had a nice treat though today – to celebrate four years together, my boyfriend cooked me a huge steak, chunky chips, corn on the cob and peppercorn sauce and served it to me in bed with my own little candle on the tray 🙂

For every cloud there’s a silver lining,

L

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I’ve been waiting so long for someone to take action with this chronic abscess/infection problem and today, after over a year of discomfort, drainage and dressings, I finally had surgery to remove the whole area.  As much as I wanted it done, it wasn’t exactly something to look forward to though, but I’ve learnt that sometimes you just have to get through these things.

I arrived on the ward at 7.30am and straight away had to change into a surgical gown before answering the pre-op questions with various people, including nurses, surgeons and anaesthetists.  It originally looked like I was first on the list at 9.00am, but then nobody could find my file so they had to let someone else go before me and I had to wait a bit longer.  The waiting is the worst part; hungry, thirsty and without painkillers, it wasn’t long before I felt uncomfortable and decided to doze off – the best way to pass time in hospital.

At 11.30am I was fitted with my sexy white surgical stockings to prevent blood clots and a nurse took me down to theatre. They managed to get a cannula in the back of my right hand would you believe, but then I have been following as many of those tips as I could. That had been my main concern after my last surgery.  I don’t really feel nervous about the surgery itself at this point; in fact, I try not to think of the things that might have worried me previously and try to relax as much as possible.  By the time they start injecting the anaesthetic, I’m already feeling sleepy and drift off quite pleasantly.

Waking up after surgery is the strangest thing; you hear someone saying your name over and feel as though they’ve pulled you out of some amazing dream but you can’t remember what and you can’t get back.  It took me a while to open my eyes but once I did I came round quite quickly and realised it didn’t hurt as much as I was expecting, just a bit stingy.  When I looked at the clock it was half past two.  After a short peroid of observation, a nurse comes and checks the nappy- like dressing at the top of my leg and gives me some painkillers then, soon after, I was wheeled back to the ward.

By this time, I’m the only patient left, everyone else has gone home. The nurse tells me I can go home too once I’ve had something to eat and drink (and trust me, I don’t need asking twice!), had my wound checked, an appointment for the dressings to be changed made and, oh yeah a wee – you’re never allowed home until you’ve had a wee. I managed all this pretty quickly; I felt fine considering I was missing a chunk of my thigh/groin area and even hobbling to the toilet didn’t seem too painful.  By half 4 I was ready to go, with a doggy bag full of dressings in hand.

And things have been okay since really, I was worried that the pain may have initially been masked by the painkillers they gave me in theatre, but even this morning and all through today it hasn’t really troubled me.  I’ve been told to lie down for a few days with my legs raised to help prevent bleeding, but there seems to be quite a bit soaking through the dressing, that’s about the only thing bothering me right now as I have to wait until Monday to get it changed and I already feel pretty manky.

I should probably mention that I didn’t get stitches in the end, because the surgeon felt the wound would need to drain, so I have an open wound underneath the padded ‘nappy’. I haven’t seen it yet, but when he marked it out it, the area was about the size of my thumb. It is packed with an absorbant tape which will also need removing and replacing on Monday, something I’m not really looking forward to but it has to be done and the sooner it starts healing, the sooner I can have a shower!

L

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Apologies if this post is a bit rough around the edges, but I wrote most of it post-surgery and I’m feeling rough around the edges too!

Infusion days always feel full of hope at first, that today could be the day that things turn around. We arrived on the ward at the normal time and had the usual pre-infusion checks – Blood test, BP, Pulse, Temp etc.  The nurse asked about any new symptoms / pains, so I had to mention the stitch-like pain beneath my ribcage, even though it could disappear as fast as it came – there have been no obvious side effects from the Orencia, thankfully.  With the cannula fitted easily, it was back to waiting for the test results and the go ahead for pharmacy to mix the infusion.

My rheumatologist came to see me a couple of hours later and I filled him in on how things had been since the last infusion – to cut it short, that I’d been having too many days when I couldn’t even get out of bed on my own and so had increased my Prednisolone to 20mg again, and that I’d been more stable since but still not brilliant.  My blood test results told the same story, I was still anaemic with a haemoglobin of 8.3, but there was a slight improvement in my inflammation markers, with my CRP down from 112 to 80ish, thanks to the extra steroid.

For the first time since starting Orencia, I am beginning to lose my enthusiasm for it and my rheumy pretty much admitted the same thing.  We both want to give it a full opportunity to work though, so are going to stick with the infusions a bit longer. I mentioned that it has definitely helped with the fatigue, which is the difference that I noticed straight away and what got my hopes up initially, but it just hasn’t reached the joints yet and I’m not sure if it will.

The infusion itself went fine, no line resistance thanks to the vein having time to recover and sticking to those guidelines too of course! I didn’t feel the rush I had felt after my first few infusions but then I’d had a late night and was pretty shattered anyway.  I’m trying not to read too much into it, but it is getting harder to believe things could turn around at this point.  I just don’t want to be negative but at the same time I need to be realistic.

My next infusion is in three weeks, rather than four, to fit in with my trip to New York, and in the mean time I need to double the dose of Methotrexate to 15mg – ugh.  I am definitely not enthusiastic about that but I’m willing to give it a go if it gives the Orencia a better chance.  It is still smaller than the dose I was on all those years ago; I just hope I don’t get hit with terrible nausea when things have been so good so far – I don’t want to be sick on the plane or in New York(or anywhere for that matter!)

Speaking of New York, my rheumy seemed really pleased that I was going and said it was one of his favourite places.  We made a plan to try and make sure I will be as well as possible for going, including the early infusion and then a couple of joint injections to give me some relief/movement in this left arm, and maybe another increase in the Prednisolone.  I felt really pleased that he was supporting me, because it reaffirms that I can’t let the Still’s Disease get in the way of enjoying my life.

So for now, I’m just trying to take it a day at a time and not look too far ahead. Ce sera sera.

L

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I’ve got a busy few days ahead so not sure when I’ll be able to post updates.

Firstly, tomorrow I’m going for my fourth Orencia / Abatacept infusion in Manchester, which means another blood test and hopefully a visit from my rheumy.  I’m interested to see what the results will show. I’m not really sure what to expect from them, as I’ve been up and down on a  physical rollercoaster since the last ones four weeks ago – just before I ended up in hospital.  If they’re better, then great but are they better because of the Orencia or because of the Prednisolone? If worse, well where does that leave me?

Results aside, I do feel better in some ways – like I’ve said before, I have more energy most of the time and I am up and about, able to do chores and things nearly every day. But I am also in pain every day, in numerous joints, especially my left shoulder, elbow, wrist and fingers.  Most days I can barely move this arm; the elbow has been locked since May and is showing no signs of improvement, even when I increase the Prednisolone.  I guess I’ve just become accustomed to the fact that it hurts and doesn’t work properly, although I know that’s not right.

Hopefully, I’ll get more answers and a plan of action tomorrow.

On Friday I’m having minor surgery on my hidrandenitis abscess/gland/tracts/scar tissue – all of which is hopefully going to be removed and then stitched back up. I’m sure he said it would be stitched back up; sometimes they leave the wound open to heal from the inside but I want those stitches… I’m still feeling a bit nervous about it all, I guess it’s unknown territory for me.  What I have to remind myself of is all the misery it’s caused, having to put up with the damn thing for over a year now, and how sore and uncomfortable I’ve been every day because of it. Hopefully, this will be a means to an end of all that.

I’ll be glad when it’s all over and I can spend the weekend relaxing.  We should actually be celebrating, because Friday marks four years with my wonderful boyfriend, but I guess that will have to be put on hold unless he has something up his sleeve…

For now, I’m just making the most of time at home and looking forward to film night with my friend – who is bringing Zoo Keeper and Mr Popper’s Penguins round later.

You’re never too old for Penguins..

L

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Well yesterday got worse rather than better really. I developed a migraine later on in the evening and so I finally gave in and went back to bed, but I didn’t sleep very well because of the pain in my joints, mainly those in my left arm/hand. I’ve been keeping up with my painkillers and things seemed to be staying at a manageable level, but yesterday it felt like somebody had replaced them all with smarties.  Every inch of my body seemed sensitive to pain, which got me thinking…

More women than men are diagnosed with Still’s Disease and other Auto-Immune illnesses; many seem to notice an increase in symptoms just before or during their menstrual cycle, possibly due to hormonal changes.  These were facts that I was aware of but hadn’t really paid much attention to – pain was pain, whenever it hit, and there wasn’t an awful lot I could do about it anyway.

Or was there?

The thing that drew my attention back to all this was the Hidradenitis and Pilonidal issues I’ve had over the past year – I gradually began to notice a pattern, with the sites swelling worse than ever each time I approached menstruation, then gradually improving afterwards.  More recently, I noticed that the joint pain increased around this time too, but whether that is due to hormones, increased sensitivity, or an increase in infection levels I’m not sure; it could be either or all.

“There are hormone changes that can affect the intensity of inflammation and also fluid shifts that can increase the swelling of joints at different times in the menstrual cycle. While some patients clearly describe fluctuations in symptoms, many other patients do not”.

So, if all this true, is there anything we can do about it? According to one article, we should adjust our pain relief beforehand in anticipation of the pain increase, to tide us over this peak of the rollercoaster. It might also help to reduce physical activity around this time too.

But just knowing that this could be the cause of some of the seemingly random pain blips makes them a little bit easier to manage, espcially knowing that they will tide over…

…until the next month.

L

Ps. Please fill in the following poll to help me find out if there is any truth in this:

 

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It only happens from time to time, but today is one of those times – A bad day, when I feel like curling up in bed and waiting for tomorrow, even though the sun is shining outside.

It doesn’t help that it’s nearly that time of month again, as that makes everything worse inluding pain, moods and fatigue.  And today my pain is definitely worse, although nothing has changed to cause this; joints are generally aching, my left shoulder and elbow are sore, stiff and swollen to the point where moving them is a no-no; my mouth and tongue are rife with ulcers and then the Hidradenitis / Pilonidal problem seems to be flaring too, with a third site developing very similar to the one I’m having surgery on.

Which brings me to the second cause for feeling low.  I’d been feeling pretty okay about this surgery until a couple of days ago, when it suddenly hit me what it was I’d be going through – it isn’t a major operation but it is in a delicate area, so it will be a ‘leave your dignity on the doorstep’ situation. Obviously, I’m worried about the fact that it is probably going to hurt too, even though it should mean less pain in the longterm. Mainly though, I’m worried about complications. Things never seem to be straight forward for me; but I hope to God that this time they are, because I don’t want anything to get in the way of enjoying our New York trip.

For some reason, the fact that I have to be dropped off and can’t even be accompanied to the ward bothers me more than it has in the past too. I’ve had surgeries before and the procedure has always been the same, but it didn’t seem to bother me then – so why now? Maybe because it is a different hospital to the one I’m used to? I didn’t have the best of experiences last time I was treated ‘elsewhere’ after all.  Maybe I’m just feeling a bit more fragile than usual too; whatever the reason, I hope I get over it by Friday.

Anyway, I’m going to try what I usually do when I feel down and that’s wallow in it for a few hours and then snap myself out of it; I’ll lie in the sun for a bit, paint my nails, listen to some music, watch a girly film, eat some chocolate… – anything to perk myself up – and hopefully tomorrow will be a better day.

L

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