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Posts Tagged ‘Still’s Disease Flare’

I spent the weekend being looked after by my Mum at her house while my Fiance was working. It was lovely to spend some time with her but, of course, sad too after the loss of Lucy. It did give us chance to talk and grieve though and I feel more at peace now.

I did something really stupid on Saturday. After sixteen years of taking Prednisolone, I somehow forgot to take my 50mg dose in the morning and soon started feeling grottier than I had been. Thankfully, I realised what I’d done some time in the afternoon and took them straight away, but boy did I suffer that night. The pain and fevers crept right back in and I was worried I’d lose a grip on all the progress I’d been making.

I woke up feeling okayish yesterday morning and the day seemed a reasonable day in general. This morning, however, I have woken up with excruciating pain in the whole of my right leg – from hip to toes. I had felt it niggling away in the night, but when I moved the leg first thing it was like waking a beast. There are dull pains, sharp pains, spasms, waves and other sensations running through the joints and the bones. A hefty dose of Oramorph has taken the edge off a little (I’m not tempted to swear now at least!) and I can have some more soon, but I am a bit concerned what this means.

You see, the pattern with my Still’s Disease is that I get a Systemic flare first, with the fevers, rash and random illness (Pericarditis, Neutropenia, Pleural Effusion to name a few); then a few weeks later the Joint flare hits big time. I was hoping the considerable dose of Prednisolone would keep things at bay this time, but this pain does not bode well. Plus the weird bubbling sensations I’m getting could well be the start of some fluid accumulation. I’m trying not to worry about things before they happen, but after things got so bad at the beginning of the year it is hard not to. For now, I’m resting up and back to using a stick since the leg doesn’t seem to want to bear any weight.

Book Recommendation: Another Alice by Alice Peterson

For the past few days I have been reading an autobiography of a woman who was diagnosed with Rheumatoid Arthritis at the age of 18ish and thought I’d share it with you. There are some differences between life with RA and Still’s Disease, but I still felt that I could relate to a lot of her experiences and found it an interesting read – one of those that makes you want to shout ‘I know exactly what you mean!’ She had a tough time of it, especially as she was a budding professional tennis player when symptoms started, yet I didn’t find it depressing just realistic. There is a section on her tennis career at the start; but, if that doesn’t interest you, it is quite easy to skip ahead to the RA story as chapters have obvious titles and you don’t miss anything from doing so. Equally, bear with that section if you can; I did and felt it summed up that sense of loss that comes with initial diagnosis, especially as a young person.

This could also be a good book to share with friends and family that want to try and understand what it is like to go through life with an illness like RA or Still’s. She explains her pain, her alienation and how she adapted and got over her feelings of shame/embarassment towards such an illness really well.

Give it a go and see what you think,

L

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This week is a busy one for me, everything seems to be starting all at once!  I had my first appointment with the Physiotherapy team at the local hospital this afternoon; this is on top of the physio exercises that I am keeping up with at home. Feeling brave / stupid, I thought I’d use my crutches to walk to the department, but it turned out to be miles of long corridors away and I was a bit (okay a lot!) worn out by the time I got there. I didn’t make the same mistake on the way back though I tell you! Not to mention we found there was a direct entrance to the department from a different car park, d’oh.

I’d barely sat down in the waiting room before my name was called and I was taken through to a cubicle for my initial assessment. The Physio was lovely; she had taken the time to look up Still’s Disease so that she could be better informed as to the best way to approach my rehabilitation. After some further questions into my background history and this particular flare up, she checked each joint’s mobility: my neck is almost normal and I think that is thanks to the home exercises as a large chunk of those are neck-based; my arms are a lot better than they were, but to her must have seemed quite bad because she said we needed to work on the range of movement I have, especially lifting/raising; my knees are moving better but there is a lot of muscle weakness and wastage in my upper legs, which is going to take a long time to recover; my hips, again, seem much better to me, but she said they were quite restricted mobility and strength-wise.  Assessing my walking on the crutches, she commented that I looked to be really struggling and quite wobbly; she suggested I might be better in a wheelchair for now, or using the zimmer frame for a while longer, but I told her I was managing.

I felt a little bit disappointed that her impression was that I was still in a bad way; but then she can’t compare to how I was when I came out of hospital and just how far I’ve come since then. At least I have that knowledge and the belief that some of this improvement is down to keeping up with the physio at home, so this next level of physio should help even more. Walking-wise, I have been taking things very slowly and it has taken a long time to get to this point; it’s only the past week or so that I have moved onto using the crutches as much as I have. Maybe I’m being stubborn, but I think it would be a shame to go back to the wheelchair and zimmer. I admit my legs are wobbly right now, but I’m sure it’s just due to doing so much this week; I’ll give myself a break tomorrow and take it easier at every opportunity I have.

Anyway, back to the appointment. The Physio decided that, because I’m struggling so much with my mobility ‘on land’ (ahoy!) right now, the best thing to start with would be Hydrotherapy, which is exactly what I’d been hoping for.  She invited me to a class that runs specifically for women with Rheumatological conditions and introduced me to the physio that runs it. It sounds like quite a large Hydrotherapy pool (as opposed to my old Hydro’s ‘tin bath’), and each person gets their own guidance and exercise regime while you’re in there. She explained that her aim would be to build the strength in my legs and get me to a point where I could walk unassisted in the water, which is easier than on land. Once I reach this point, then I can return to the regular physio to carry on this strength-building and start the process of trying to walk unassisted on land, using parallel bars etc.

Maybe I’ve been a bit naive, but I wasn’t expecting my recovery to be such a long and intense process. I’m trying to think back to the previous times I’ve had to get myself walking again and I don’t remember it being so hard. Maybe it’s because I was younger then, still a child really, and so I naturally bounced back quicker? But my main suspicion is that I was just stronger over all; that over time I have let myself waste away too much and become weaker than I should have been, meaning my body wasn’t prepared for such a shock to the system. All the more reason to make sure I continue to build myself back up now and after my recovery – the stronger our bodies, the easier they can fight all this I reckon.

She seemed quite positive I would at least get back on my feet eventually, which I guess I should be grateful for.  I am a bit worried about how I’ll manage during our trip to Dublin next week, but I will manage somehow – where there’s a will there’s a way and all that.  I start the Hydrotherapy class on Monday afternoon and I’m really looking forward to it, then I’ll be able to take some of the exercises with me to the pool on Tuesday and relax for the rest of the week.

We stopped at one of the local farm cafes on the way home, for a hot drink and a slice of cake, as a bit of a treat. Since the sun was still out and it was quite warm, we sat at a little table outside and spent an hour watching the agricultural world go by – so peaceful. I’ve often thought I’d have been quite happy growing up on a farm and one day I’d love to have a house with enough land to keep a few animals.

It’s good to look to future and dream :),

L

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Just a quick note to say that I sent my Rheumatologist a weekly update on my condition, which isn’t getting any better. My current joint count includes: both hips, but especially my left being painful and unstable, both knees being very swollen, sore and restricted, left elbow swollen, painful and very restricted, both shoulders painful with fluctuating levels of restriction, neck stiff and sore, left wrist and fingers starting to feel puffy and stiff and developing pins and needles through to that hand, both ankles feeling tight and the left side of my jaw quite painful and tender to touch. So, you can probably understand that my hopes for Tocilizumab ever working are slowly dwindlng away…

I said as much in my email to my Rheumatologist and was relieved that he feels we have given the current treatment combination enough time now and that he is looking into other options to see what we should try next. I have been on Tocilizumab for 6 months now; 4 in combination with Methotrexate and 2 with Ciclosporin. Blood test results have show significant improvement but my joints have definitely not; in fact, I am much worse now than when I started.  In his reply he stated that the next step will probably be a stronger anti-tnf drug; Enbrel worked for a long time, but I eventually formed antibodies against it. I know there have been a lot of advances in anti-tnf since then and so I am happy with this option.

I’m due for my next infusion on Friday and will see my Rheumatologist to discuss things further then and hopefully come away with a plan of action. I’m guessing I’ll at least have this last dose of Tocilizumab and then maybe we will start the application to fund something new. I also hope that they will be able to take some of this fluid off my joints, particularly my knees, to give me a bit more movement. Not being able to bend my knees or weightbear on my hips properly is certainly proving to be a challenge!

Until then, I’ll be doing some research of my own into the anti-tnf options available,

L

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I seem to keep following up every positive post with a negative one, but that is just how things are at the moment – I am definitely on the ‘Still’s Rollercoaster’ and wanting to get off.

Last night was the hardest night we have had in a while. As well as the obvious hip pain, I had been seizing up more and more as the day went on; my elbows, shoulders, neck and collarbone were pounding and I could barely move my upperbody and then when the time came round to move me from our upstairs Snug to the Bedroom, I discovered that both my knees were so swollen that they wouldn’t bend an inch. Trying to get me up from the sofa when I was unable to bend or weightbear with either my upper or lower body proved extremely difficult and there were a lot of tears from me and looks of sheer panic from my boyfriend. Even once we managed to get me on my feet and changed, we had the same problem trying to get me into bed. I couldn’t move my limbs myself, couldn’t shuffle or roll or do anything you take for granted getting into bed; I really thought I was going to have to sleep back on the sofa.

So swollen and full of fluid it won't bend - you can see the difference to my skinny legs.

Somehow we managed to get me in the bed, propped up slightly on my back and with a pillow beneath my locked knees, which wouldn’t fully straighten either. I’ve been this way with my knees before (many-a-time) but can usually compensate with my arms; the fact that I felt every single joint in my body was giving up on me and swelling with fluid despite all the cortisone injections, is what made it so tough. I was in bed but I was now helpless, unable to move an inch without extreme pain, or to even shift the duvet, which suddenly felt like a ton weight. This is a scary feeling; I’ve felt it before but this is one of the worst times yet. My boyfriend was on call and would have to wake me to administer Oramorph each hour until I found some relief from the deep throbbing pain that had my body in a vice… but eventually, I did manage to drift off to sleep.

The point I wanted to make though, is how much this is all affecting my boyfriend too.  I am so lucky to have him; he’d do anything for me and that’s part of the problem – because he still sees me suffering, he feels like he isn’t doing enough to take it away.  He’s starting to look exhausted himself; the weekend away helped but now we’re back in the routine of him caring for me at home and working full-time it is taking its toll again.  Plus, he can never really leave it behind when he does go to work. He says I’m on his mind all day (not in the usual way unfortunately), he can’t concentrate properly and is making silly mistakes because he is so distracted and tired. He came home complaining of sore ribs last night and only remembered after a few hours of being home that he’d actually had a bit of a fall, which explained the pain. I mean, how do you forget something like that?

I worry that he might see me in a different light all of a sudden, in fact, every time I need help dressing or getting into bed, or off the toilet or when I move like the tinman; that he’ll be put off by the rashes, the Pred cheeks and swollen, deformed joints I keep presenting him with. We’ve been going through this flare at some level for two years now which has been bad enough, but this is the worst he’s ever seen me and I know he is shocked. But he is never anything but loving and supportive, telling me that we will get through this together. I know how much it must scare him though and it breaks my heart. I want to be able to reassure him that everything will work out and I do try. At least I’m lucky enough to be able to look back on previous flares and be reassured that thing did get better; for him, this must seem neverending and unfathomable. It’s almost as if I now want to get better for him more than anything else, to give him a slice of normality again and show that this isn’t how our relationship is going to be forever. I want to make him feel better.

Because it’s so so hard for him to watch me going through this… and it’s hard for me to know that too, but how do I protect him from it? I hope, that when we can put all this behind us to some extent, our relationship will be stronger for it, but for now all I can think is….

Cruel disease.

L

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I thought that I’d concentrate on an realtime update, while backdating is taking so much longer than I expected. Things have reached a sort of equilibrium on a daily basis, between struggling with pain, mobility and capability in the mornings and managing things better in the afternoons. Someone from Social Services phoned on Friday to say that I was on top of the list for a home assessment that will decide whether I need a Care Package for a short time at home.  Personally, I feel that I only need some help in the mornings as I am too sore to do anything before my boyfriend leaves for work. We have our routine that works for a lot of things, but nothing in place to help me shower or dress. Dressing I can leave until the pain and stiffness eases enough to allow me to try, although this was late afternoon on some days last week.

Showering is probably the biggest problem. We have tried it once and am in no hurry to try again; there were too many problems and tears and it was simply not safe. As helpful as my boyfriend is, he isn’t trained to shower someone who can’t stand without support and such restriction raises more issues than you would imagine. Getting into the shower, over that little step, when you depend on a frame is hard enough itself; but, once you are in, there is nothing but wet walls for support and no way to move when you can’t bear you weight through something. I was terrified of slipping and falling. So, for now I am having thorough sponge washes twice a day and hope that someone will come to our aid with something to enable me to shower.

In the meantime, they did send me round a toilet frame that same afternoon, which has made ahugedifference to me. It was so difficult and taking such a long time to negotiate the toilet, that I was worried I might have an accident at some point. Worry no more! 🙂

On a more positive note, it was Valentine’s Day recently and we had booked a weekend hotel break as we do every year. We were actually going to cancel it, thinking I was just too poorly to manage, but because it was already paid for the hotel wouldn’t allow us and so we made the decision to give it a try. Fortunately, we had only booked somewhere very close by and purely for the hotel facilities rather than any plans to sightsee, so we figured that I may as well struggle there (in luxury) as at home. I think a few people close to me thought I was slightly mad and pushing myself too much too soon, but we all have to make our own decisions and live with them.

We got in touch with the hotel to explain the situation and they were very accommodating, upgrading us to a Disabled Access room that was on the ground floor and very close to the restaurant, bar and spa. I was able to use my zimmer in the bedroom and only had a short distance to manage on crutches, to get to meals. Once that initial morning struggle to get me dressed was out of the way, we would sit at breakfast for at least a couple of hours just taking things very slowly and waiting for my pain relief to kick in. Then eventually we would move across to the bar/lounge area and set up in a cosy corner there for the afternoon.  I was happy reading and making some notes for projects I have in mind, while my boyfriend made use of the free Wifi we had been offered to make our stay more enjoyable. Add to that being waited on with lovely food, cakes, tea and hot chocolate… you can probably see why I didn’t want to come home!

So, over all we had a wonderful weekend and I’m so glad that we took the chance, instead of playing it safe. Just to have a change of scenery, to have a reason to wear nice clothes and do my makeup, has given my spirits such a boost that I feel more able to deal with the issues that the Still’s Disease keeps throwing at me; and they do keep coming. Only yesterday, while away, I was presented with a new problem – both of my knees have swollen up, meaning it is now extremely difficult to stand from sitting as I can barely bend from my hips or my knees. My thoughts are that the Tocilizumab infusions aren’t working but we have to persevere a while longer as there are so few options left treatment-wise; we don’t want to write them off too soon.

Roll on March 2nd though.

L

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{Backdated Post}

Today was another quiet day on the medical front, with more of the same as yesterday; mostly spent passing time with my wonderful visitors. Since my boyfriend is my main carer at home, they allowed him to stay longer each evening to get me washed and setted in to bed, which was better for me and took some pressure off the nurses.  Outside of visiting I had plenty to keep me busy by getting to grips with the bedside TV/Internet/Telephone that had just been installed in my room, and which turned out to be a lifeline for me over the next few days.

Symptom Watch: Still’s Rash

I thought I’d use this time to talk about something that everyone during my hospital stay found fascinating in terms of the Still’s Disease itself and that is the Still’s Rash.  The rash became very prominent during my initial stay at Southport and remained so throughout my stay at Manchester too. Junior doctors, nurses and Rheumatology specialists kept popping in to have a look and even those without much background in Rheumatology were intrigued and asking many questions. I was pleased that people were taking an interest and even I feel like I have learnt something new about my rash and what it means.

In my experience, the Still’s rash tends to appear at the very start of a flare up, alongside other systemic symptoms such as fever, headache, loss of appetite and fatigue; it is usually a good indicator that things are getting worse and that joint involvement will shortly follow. The rash itself manifests in different forms, but I am convinced it is all the same rash:

1.

Two examples of the speckled rash that I get with Still's Disease - On my feet and the back of my hands.

Faint and speckledy, as if under the surface of the skin, and more visible in certain lights, such as fluroescent lighting, as in the above photographs. This type of rash is usually widespread and appears across the backs of my hands and feet, the bottom of my arms and legs, and across my chest and abdomen. It can often look like the type of rash you get with an allergy but is not raised, hot or itchy. This is usually how my own Still’s rash makes its first appearance, especially if I’m experiencing only ‘minor’ Still’s issues.

2.

An example of the hot, red and angry patches that appear during Still's flare - here the focus is at the very top of my arm.

Angry, red and hot patches that spread across the tops of my arms, thighs, chest and cheeks. These appear when I have quite a high temperature and/or a lot of inflammation happening in my joints (separate to the joints themselves being hot and red though).  The patches are usually well-defined, with just one at the top of each limb or on each cheek. The heat that comes from these is amazing and will quickly warm anything used in an attempt to cool them down. I picture it as an outlet, to release the heat from fevers and the inflammation that is rife within my body. This type of rash usually occurs mid-flare, at the height of disease activity.

3.

Photos showing the purple smudges under my eyes and the 'blotch' type rash that appears on my face, neck and chest.

Random purpish-red smudges and blotches that appear anywhere, but particularly under my eyes and on my face, neck and chest; they are not raised and do not itch but can feel warm at times. This type of rash seems to be related to my level of pain and fatigue more than anything else, although this is just a theory. It is also usually other people that point it out to me, rather than me noticing it myself. It can come and go, or change appearance, quite quickly.

It was only during this past hospital stay that any connection was made between this type of rash presenting and my level of pain. The Registrar noted that I had the redish-purple smudges beneath and around my eyes, as well as elsewhere, every time he saw me in a lot of pain and so I began to monitor this with the nurses. Lo and behold, each time I requested Oramorph or was due my Morphine, the smudges would appear! It felt like our very own experiment and discovery (highly scientific of course!) and my Rheumy was quite interested to hear about the possible connection too; I wonder if anyone else has noticed something similar in their own rash pattern?

As I said earlier, these rashes appear early on in my flares and are a clear sign that things are going to go downhill with the Still’s Disease. Quite often, if I increase my dose of Prednisolone for a short time on the rash presenting, I can prevent things from getting any worse and keep the joint involvement at bay. So, you can see that it can be quite useful to learn and understand your body’s own rash patterns, (I can’t say that the pattern I’ve described here is the same for everyone). Think about the times when your rash is most prominent and what is happening to your body in terms of Still’s Disease at the time – are there any triggers, any differences in the rash’s appearances between symptoms, is the timing significant? Maybe keep a diary to record details about your rash for a while, especially if you are newly diagnosed, until you start to see a pattern that allows you to use it to your advantage. It might be that there isn’t a pattern for everyone, or at least not beyond it presenting alongside other symptoms, but it is at least worth looking into.

Once a flare does take hold and progress into joint involvement, my rashes and other systemic symptoms tend to gradually ease; perhaps not altogether, but they become less troublesome than the joint problems that follow. Again, I am aware that this may not be the case for everyone, just my own personal observations. If you wish to share your own with myself and others, please comment at the bottom of the page.

I’d be really interested to hear from other people about their own Still’s Disease rash/es; in fact, I have wondered if it might be a good idea to put together a collection of images to compare the differences and similarities between individual cases. A sort of project into Still’s Rash that we could eventually use as an information resource.  If anyone has any questions or thoughts on this, please feel free to email me at stillslifeblog@gmail.com

I am also going to include a brief poll here:

L

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{Backdated Post}

This morning was an extremely difficult time, but I was closer to getting things more under control and was finally receiving the right care.

They woke me at 8.00am to take me down for an MRI (Magnetic Resonance Imaging) scan of my hips and spine; unfortunately, the porter collected me before the pain medications were dispensed and by the time we got down to Radiography, I was distressed and shouting out with the excruciating pain once again, especially after being ‘patslided’ numerous times (this is undoubtedly a useful way of manouvering immobile patients, but does not protect you from the pain of such movement). They had to call up to the ward to bring some relief down, since I needed to be still for the 40 minute scan and at this point it wasn’t looking likely. Even the Morphine didn’t really settle things down; I was realising that by the time it got to such extremes, it took repeated doses to get back on top of it. They asked me if I wanted to postpone the scan but I felt that it was needed to get to the bottom of what was causing the pain. The sooner we found that out, the sooner we could treat it properly.

So I told them I wanted to go ahead, grit my teeth and attempted to take my mind elsewhere.

The MRI Scanner

I’ve had many MRI scans in the past and usually find them quite relaxing, despite the noise. They lie (sometimes strap) you on a stretcher that moves into a tunnel, where the scan takes place. In the above picture it looks like the patient has gone in headfirst, but in my experience my head has been at the entrance – much less claustrophobic. Usually, they give you headphones (often with music), both to protect your ears from the noise and to communicate with you from outside of the room; they also place a buzzer in your hand, which you can press at any time you feel distressed or want to stop. The scan is not painful. It basically consists of rotating magnetic signals being blasted at your body as you lie very still – you cannot feel these but they are expressed as noise patterns that change with different frequencies etc. So for five minutes it might sound like you’re surrounded by knocking, the next five by drilling, the next five by clicking, tapping, zapping and so on… A lady I met even described one of the noises as reminding her of frogs croaking first thing on a wet morning in Borneo!

I tend to just shut my eyes and relax, as if going to sleep; but this particular scan wasn’t that easy though. It was torture just making myself lie still, as my body kept trying to tense up to protect itself from the pain; I had to consciously relax every muscle and breathe. I think I cried through a good ten minutes or so of it but knew that wasn’t helping, despite it being an automatic response. The pain was still severe but eventually I managed to distance myself from it; I can’t exactly explain how – I’ve read a few books on meditative practices, so maybe they came in handy? I knew that each change in the sound pattern meant a certain amount of time passing and soon enough it went silent and a voice in my ear was telling me it was finished. To say I felt relieved would be an understatement!

Obviously, it takes time for someone to analyse the MRI scan pictures and give a full report, but sometimes things are apparent straight away. For me, they noticed that I had a lot of fluid surrounding my left femoral head (ie. Left Hip joint) and a smaller amount around the Right. I was taken straight to another part of the department to have this removed by aspiration and ultrasound. By that point, I was allowed further pain relief and this dose worked enough for me to feel a lot calmer. It’s embarrassing to look back on now, but I caused quite a scene that morning howling like a banshee and such. Thank goodness the worst was now over.

I was quite nervous about the hip aspiration. I’d had it done as a child but they put you under with gas at that age; this time it would be an injection of local anaesthetic. The team of people with me were lovely and great at making me feel at ease; the Radiographer in particular had a very calming effect and I felt in very safe hands.  He used the ultrasound scanner to examine my left hip first and to pinpoint just where the fluid had accumulated around it. This is similar to the scanners you see unborn babies with – a cold gel is placed on the surface of the skin and onto a ‘probe’, which the radiographer slides over the area in question, sending ultrasonic waves through the skin. These waves bounce off things inside at different levels (according to density I think), to create the pictures you see on the screen – the main thing I learnt is that fluid bounces back as black, so when he was looking for the fluid around my hip joint, it appeared as a large black shadow around/within the hip, which appears a greyish-white as that is denser.

Once he found the fluid, he needed to find a straight path to it from the skin surface without passing through any major blood vessels – there is actuallly a lot more time spent preparing the procedure than the procedure itself. Happy that he’d found a route, the radiographer then slowly began to administer the local anaesthetic by long needle; he did this in stages to ensure that I was as numb as possible, but as he came closer to the joint itself, he began to warn me that I’d feel quite a bit of pain but it would be shortlived. The pain didn’t come. He kept asking me “are you sure you can’t feel anything?”, while jabbing the needle further in, and I kept shaking my head. It was a bit like the movie ‘Death Becomes Her’ where the doctor can’t understand how her very broken wrist isn’t troubling her!

I asked him if this was something to worry about and he pulled that confused, thinking look that doctors do sometimes, as he explained that most patients find it at least uncomfortable to have a needle in the joint capsule. He said if I really wasn’t feeling anything, then he’d be concerned that I had some nerve damage to the hip itself and that this should be investigated too. For now though, we concentrated on the aspiration. With the needle in place, he was able to aspirate 5ml of fluid from the hip capsule; this didn’t look an awful lot to me – one small syringe, whereas my knees used to drain 2-3 much larger syringe-fulls as a child – but apparently it is a lot, as there is very little ‘spare room’ within hip joints. I was told that this explained the level of pain I was in and the lack of response to pain relief. He told me that they could have given me all the pain relief in the world, but as long as that fluid was stretching the joint out of place as it was, I’d have had excruciating pain. Hopefully, with it now gone, things would settle to a more bearable level.

I was confident that they would; in fact, I was pretty sure that I noticed an improvement as soon as the fluid was gone. I was by no means cured – the fluid needed to be sent for testing to rule out septic arthritis and we needed to find out if anything other than the Still’s Disease was causing the hip to produce so much fluid / get the full report on the MRI scan etc…  I have had very fluidy joints in the past, but I can’t remember where it fits in with things. Since this has become a major issue this past week, I will look into it myself at some point. After the hip aspiration, I was also given an abdominal ultrasound; something I was due to have that day anyway. It showed that my liver and spleen were enlarged, but since this is common with my flares, it didn’t cause him too much concern.

The rest of the day blurs in with the rest; I was to remain slightly propped up on my back in bed to take the pressure off my hips until the full MRI report was back, but with no turning timetable; instead I had to be checked for pressure sores and, when developing the starts of them on my heels, had to rest them on an inflatable. The auxillaries had to do everything for me – wash me, dress me, toilet me, help feed me… but when you feel so poorly those things don’t bother you, you’re grateful for the help and they were brilliant at providing it. I slept a lot but my Kindle came in handy as I managed to hold it above me to read for short periods but then my friend downloaded some audiobooks onto my blackberry, which was even more perfect! People were always popping into my room to see if I was okay and I had plenty of visitors, so strangely, I never felt bored!

It was decided that we would go ahead with my fifth Tocilizumab infusion that afternoon; the initial feeling on examining the fluid from my hip was that it was ‘viscous and stringy’, a good sign that there was no infection present. If it turned out there was, I’d be hooked up to IV antibiotics straight away anyway… it was one of those ‘risk-weighing’ decisions and I guess there was more risk in leaving the Still’s untreated by this point.  My infusion ward was only next door and my regular nurses took it in turns to pop round and check on the infusion and to see what ‘trouble’ I’d got myself into. They all have a way of making you feel that they care about you as an individual and they have a lot of patients going through their ward each week/month/year.  I guess this is an example of how good care can be in hospital too – from one extreme to the other.

My consultant visited that afternoon but I don’t remember much about the conversation now. All I know is that I was pleased he took the time to see me and it again reassured me that I was on the right track. One thing that we both agreed though, is that I’ve had some nasty flares and some severe joint involvement over the years; but this hip pain was totally out of proportion to anything I’d ever experienced and we needed to get to the bottom of it fast.

L

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