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Posts Tagged ‘Joints’

Following on from yesterday’s retrospective post, I spent the night on the Short Stay Ward with a view to have a CT scan and a couple of other tests today.  Before I carry on, I would like to point out that I have no problem staying in hospital and I’m not one of these people that look for a reason to complain or be awkward.

I’ve mentioned here before that I often struggle in the mornings at the moment, ranging from needing help to sit myself up in bed, to waiting for my painkillers to work before I can function well enough to shower, dress and generally move about better.  This morning was one of those days that I woke up unable to really move thanks to pain and stiffness, not even to lift the blanket away – as a young person, this is difficult to admit and I would certainly never exaggerate or play on it in any way.

The breakfast lady woke me and put a bowl of cereal and a hot drink on the bedside table; I told her that I needed some help to sit up and eat and she said she’d let someone know.  Twenty minutes later, someone else came and took my uneaten breakfast away and placed my tablets on the table instead. Again, I tried to explain that I hadn’t eaten because I needed help to get myself up and would do to take my tablets too, she said she’d let someone know but later came back with a wash bowl and told me to have a wash as ‘it would make me feel better’. I tried to explain that I couldn’t get myself up AGAIN but she just huffed and went away before I had chance to finish.

I was starting to really hurt now, being stuck as I was in the same position.  Then half an hour or so later, two nurses came to change the bed and told me I’d have to get up. I tried to explain again that I would need some help sitting up; their response was to stand and stare then say ‘Just swing your legs round and sit yourself up’. Not very helpful but I kept calm and tried to explain that I couldn’t as I was in a lot of pain. ‘So why haven’t you taken your painkillers then?’ they asked me, quite sharp by this point. I couldn’t believe they had to ask. ‘Well it’s not like we can lift you up, you’re not a baby’. The other one spat.

I was just trying to explain that all I was asking was for a bit of a push/ support on my back to prop me up in a seated position, from which I’d eventually be able to unfurl my locked arms and legs, when the first nurse grabbed me by the (extremely painful) arms and started to drag me to the edge of the bed; because I ended up horizontal across it, the second nurse proceeded to grab my ankles and pull me by them too. I don’t know if they were expecting a miraculous recovery, for me to sit up and say ‘okay I give in, I can actually sit up I just wanted to make a fuss…’ but if it had carried on a few seconds more I’d have ended up on the floor.

Thankfully, at that point, a doctor appeared and asked them what was going on.  I just burst into tears and in all my life, in all the times I’ve spent in hospital, I have never cried. But then I have never been made to feel so humiliated either.  The doctor calmed me down and asked me what the problem was; as soon as I told him he gently gave me the right support to prop me up in bed so that I could take my painkillers and told the nurses that it was actually in my admission notes that I was having some mobility problems and might need some help.

As always, I was moving much better after a couple of hours and had to then listen to the two above nurses discussing how I’d had a ‘miraculous recovery’, at the end of my bed of all places! When I tried to explain to them the reality of living with Still’s Disease and flares, I was met with dirty looks and they promptly walked off, but I had to put up with petty, snide remarks for the remainder of their shift.

You can probably tell that this incident upset me but I’d been told that my CT Scan was booked for 2.45pm and that I could go home if it was clear, so I just kept my head down reading until that time, still thinking it best to get the scan done.  Sure enough, at 2.45pm I was taken down to the scanning room, only for them to tell me that I was supposed to have a green canula fitted to inject the contrast that would show up my blood vessels.  The ward knew this but nobody had even tried. The doctor there did try to insert one, but because of my bad veins she couldn’t manage and so I was sent back to the ward with the promise that someone would insert the canula there and take me back down before it closed at 5pm. Funnily enough, nobody did.

It became obvious to me that I wouldn’t be getting the scan until the next day and I couldn’t bear another morning like this one, so I made the decision to discharge myself against their advice. The ward matron was on duty by that point and wanted to know my reasons and so I told her about my experience.  She did apologise and said she had a friend with Still’s Disease; I hope that at some point she stands up for this friend and myself, by educating the two ignorant nurses in question.

Anyway, I have never been so relieved to be away from a hospital. What I have accounted here is my own main experiences but I also witnessed a lot of other mistakes and mistreatment of patients that I will be including in a formal complaint to the hospital.  Now, my doctors might think me clingy, but this had made me feel even more certain that I don’t want to be treated anywhere else but at my own hospital, with people that know my background; people I trust.

Oh, and I never did get the blood transfusion!

L

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Perhaps my bubble is about to burst...?

After everything that happened at the hospital yesterday, I was feeling pretty confused and disheartened, plus I was absolutely exhausted.  Hospital visits do this to me – so much energy is put into preparing myself for them: thinking of the things I need to discuss, prioritising a host of symptoms, making notes and then trying to make sure I express everything that I need to clearly… and then in the appointment itself, taking in what the consultant says, absorbing and digesting it, understanding what it means for me and thinking about the consequences of any decisions on the present and the future. 

When I’m flaring, I go to these appointments with a sense of anticipation, that maybe my doctor will have a new solution, a miracle up his sleeve that will make me feel better – something solid I can take away with me there and then.  Although, realistically, I know that this isn’t how the game of treating Still’s Disease goes – it’s more like snakes and ladders, just as you think you’re getting somewhere, you get sent sliding back down to the bottom – so perhaps I’m setting myself up for disappointment each time. We try to keep our discussions positive, but at the same time you can’t shake the feeling of uncertainty about it all and I always leave feeling like I’ve been through the wringer, with my mind whirling and body exhausted.

However, I woke up this morning feeling more like myself, determined not to let this latest setback get me down; yes, the things we discussed were worrying and confusing but at least I was feeling more able to do certain things and surely I need to make the most of that even if I can’t explain it. Maybe the bloodwork is just taking its time catching up, I don’t know, but I was happy just to carry on and know that my doctors were keeping an eye on things.

Morning and early afternoon passed by fine; I’d managed to get a few things done when I noticed I was getting quite a bit more pain in certain joints.  Half an hour later, I felt it was bad enough to require an additional dose of painkillers (I try and stick to 2 doses a day) and as my heart was racing too (156 is high even for me), I decided to have a bit of a nap.  I must have dozed off because it was teatime when I woke up, but I quickly realised that the pain had gone even worse, so much so I couldn’t lift my head from the pillow or move my arms from under the duvet, every inch of my body seemed to burn or throb with pain.

In the end, I needed help to even sit up in the bed and later to hobble about. My boyfriend’s parents were understanding, but I felt embarrassed and ashamed that they had to see me so helpless, especially when it came out of the blue. How can I explain it to them, if I don’t understand it myself? There are a number of thoughts floating round my head right now – could it just be that I’ve been building up for another Still’s flare these past few weeks, has the Methotrexate effected me in some way or maybe even the Orenia? Or has my mind been playing tricks on me all this time?

Do you think it’s possible to think yourself better, even if you’re not?  I was soo looking forward to starting Orencia that maybe I built my hopes up so much that I believed it was going to help and expected nothing less.  Perhaps I imagined the tipsiness, the tingling and the new strength and energy, getting through the wedding weekend on optimism and willpower alone. What if it has just been a case of mind over matter so far, and now that I’ve been faced with the reality of my bloodwork the illusion is shattered and it’s just not enough to keep the physical things away anymore..?

There are no easy answers. All I know is that I haven’t hurt like this for a while and I’m at a total loss what to do.

L

Ps. Most of this post was written the morning after, I was just too sore to even type last night.

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I feel like I’ve been MIA this past week or so.  It’s been hard to think straight since starting Methotrexate, as if words keep falling out of my head, and the fatigue is back with a vengeance; all of which left me thinking I’d just do a useless job at writing.  I’m finding it hard to even decide what I want to say; I never wanted this blog to be just about me, but I’ll start with a catch up (there’s another word I want to use here but it’s fallen out) on how things are going in case people can relate.

I am convinced the Methotrexate (mtx) is making me feel worse than I was in the week between starting the Orencia and the Mtx.  After the first infusion I felt fantastic, plus I had colour in my skin, pink in my cheeks and life in my eyes; people commented on how well I looked!  Now I feel like a zombie, I look in the mirror and see grey skin and tired, bloodshot eyes with purple smudges under them and traces of a rash around them. Even with make-up I’m starting to look like I feel.

This is without make-up, with no alterations to the photograph - attractive no?

Whereas I was bouncing out of bed at a reasonable time (8.00am) and going down for breakfast, showering, dressing within the hour, I’m now having to force myself to wake up, sit for a while adjusting and then to drag myself downstairs to get something to eat/drink before heading back to bed with a book.  The rest has to wait until my medication and painkillers have kicked in enough to ‘liven me up’ and ease the acheys. Not as bad as a month or so ago, but still a step in the wrong direction.

I feel nauseous most days but it’s bearable and nothing compared to what I experienced as a teen.  I can still eat for a start, which is a big priority for me since I am a real foodie.  I and everyone else around me knows that things must be bad if I pick at a meal or say I’m not hungry – I’m usually willing to wolf down even hospital meals for pete’s sake!  I guess I’m still making up for the years I couldn’t enjoy food thanks to mtx, but that’s a different story…  The only problem with eating right now is that I get terrible stomach pains after each meal; sometimes I have to excuse myself and lie down until it passes, which it does after a while.

I don’t know what my bloodwork has been like recently, since the hospital have been keeping track of that. Once the infusions are every month I will have to alternate my blood tests between the hospital and my GP, while trying to conserve my veins.  I’m still getting joint pain and swelling although there is a tiny bit of improvement – my fingers don’t look like sausages and I can remove my ring again (phew).  I have general achiness in most places, but the left arm is definitely being attacked by RA – I can’t raise my shoulder past a certain point and the elbow doesn’t bend or straighten, only having a tiny range of movement.  Quite often both are red, hot and swollen.

It's pretty much stuck at that angle constantly.

I feel like the elbow in particular is heading the same way as previous joints affected by acute attacks of RA – for me inflammation seems to pick a favourite place during a flare and wreak havoc.  First it was my ankles as a child, then my knees as a teenager and my right shoulder in my early twenties… each needed surgery and I can see this needing the same at some point in the future, before it’ll ever be right. Of course, I hope I’m wrong.

So that’s where I am right now, it feels almost like limbo because I know that after both infusions I have felt a big difference (which is so encouraging!) and yet I get pulled back down to earth after taking the Mtx, which is making me feel rubbish again… and all I want is to feel how I did in that first week.  It’s as if I was given a little taste of ‘normality’ only to have it taken away again.  I’m not even sure how to communicate this with my Rheumy, improvement or no improvement?

L

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Home from my Rheumy visit and feeling a bit tender; ended up needing my shoulder injected too as there was quite a bit of fluid there.  Steroids always seem to do the trick for me and it usually only takes a few days for things to settle down after having a joint injected so I’m confident I will see some improvement soon.  If only there weren’t so many side effects, treatment would really be that simple. 

I was prompted to discuss this with my rheumy earlier, when a certain conversation got me thinking about the pros and cons of steroid therapy as it stands.  I hate the stuff, but I have to say it works when I need it to and when things get tough, a temporary increase is usually the first thing we try to settle things down.  I have been on various doses over the past fifteen years and that is with just one break, which happens to coincide with my most serious flare up. When I am well I tend to hover around the 2.5mg – 5mg dose and the highest I’ve been on is 80mg when I was very first diagnosed; the rest of the time I’m somewhere in between. 

I hadn’t been overly concerned about this until recently, taking the view that it was important to feel as well as possible and to reduce symptoms and any possible joint damage.  Then I happened to see my consultant’s registrar in clinic and he said that one day I/we would regret all the steroids I have had to have over the years in various forms (Oral, IV, Joint Injections).  Of course this worried me; I have already experienced a lot of effects already, including an increased susceptibility to infection, and persistant tachycardia. Then there are things like heartburn, stretchmarks (ugh) and weight gain (double ugh), which aren’t pleasant but are bearable in comparison to the pain of a flare or joint damage.

The most worrying ones for me are those that are possible in the future, such as adrenal failure, Glaucoma, Diabetes and Osteoporosis.  I know that my bone density is already below the normal range and I am at risk of developing diabetes anyway since it runs it my family.  As for adrenal failure, the possibility of this was already mentioned when I last tried to wean myself off Prednisolone altogether four or five years ago; I could never get past the 2.5mg mark without showing some signs of this.  Perhaps it’s about time that I do start to think about how these and other possible contraindications could effect me in the long-run. 

I guess what surprised me was that two rheumatology practitioners, working together, could have such different opinions on my treatment with steroids: The consultant, who increased my Prednisolone dose and gave me two cortisone shots to ease the flare and the registrar, who was extremely reluctant and in fact wanted me to reduce the dose, despite the flare.  I know one has more experience than the other and perhaps that is the best factor to base a decision on… but how do you know for sure which approach is right?

On top of weighing the risks with the benefits it also becomes a matter of weighing the present with the future; we are always being told to live for the moment and of course we all want to feel as well as possible now.  And is it really worth putting present health on hold to protect the health of a future, in which anything could happen – for better or for worse?

Perhaps it’s simply trying to find a balance between the two? Weighing the risks and benefits of all sorts of things becomes part of life with Still’s Disease after all.

Food for thought.

L

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Still feeling rotten after the weekend, don’t think I have helped this flare at all.  The pain is now in both arms, knees and hips so that I’m finding most things pretty difficult and needing quite a bit of help; plus the fevers and rash are coming through more too.  I know it’s my own fault, that this is the price I have to pay for a few hours of fun, but I’d probably do the same again – not sure my rheumy would be too pleased though. 

Was I wrong to go? Should I have stayed at home and continued to put my life on hold for however many more months?

I rang the secretary and explained what had been discussed with my rheumy last Thursday and she’s added me to his clinic in the morning; it’s a 9.30am appointment, which means a very early (and creaky) start but hopefully it will be worth it.  I’m guessing the elbow will a need a shot of cortisone as that is still the worst affected joint; that extra steroid should help me in general though. I’ll also be able to show him my latest blood results, which they printed for me this morning when I went for my fornightly trip to the nurse.  A lot of them are starting to look a bit iffy and my inflammation markers are getting higher every time, so at least I know it’s not all in my head (which certain people make me wonder sometimes).

So here’s to tomorrow.

L

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I phoned my Rheumatologist’s secretary earlier to let them know that I was going downhill a bit and having all this inflammation in my left arm – the elbow is still locked and won’t bend or straighten, shoulder won’t budge, wrist is burning and my fingers look like little sausages that I have to stretch open myself if I keep my hand too still.  In a way I’m glad it’s localised to this one limb right now at least, although the pain is getting worse, to the point that I see stars if I try to face my palm up ( I know… so don’t even try?!)

Anyway, the good news!  She told me that the funding for the Abatacept has finally been approved so now all I need is to wait for a letter from the ward with a date to start. Hopefully, I’ll be able to fit in two infusions before my friend’s wedding on July 2nd and (if it works, fingers crossed it will!) be well enough to enjoy it without constantly pacing myself as much as I am right now.

I also spoke to my Rheumy about the above problems and he suggested I increase the dreaded Prednisolone to 15mg and if that didn’t help over the weekend he would fit me in his clinic on Monday or Wednesday. I feel lucky that I have such a good Rheumy; he’s always quick to respond and never leaves me hanging like I know some do. In fact the whole  team of people that look after me there are great, which is why I’m happy to travel so far to see them.

Back to waiting I guess but at least this time I know that there is a light at the end of the tunnel 🙂

L

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The question dreaded by most people living with illness on a daily basis.

Should we just smile and say ‘I’m fine thank you’?  Do we go ahead and tell the truth and, if so, how much information do we share, is there such thing as too much information?

For a long time I practised the former; I put on a brave face and tried to make out that everything was fine. I didn’t talk much about my illness or experiences to anyone; in a way I was living two separate lives.  Perhaps at that point I still had hopes of recovering fully and carrying on where I had left off; all I know for certain is that the longer I tried to keep it up, the harder it became until I finally began to open up to people and accept Still’s Disease and all that comes with it, as part of my life.  Now when people ask how I am, I try to tell it as it is, albeit in various shades of the truth – obviously my doctors and those who are closest to me need to know when I’m feeling downright rotten or they might start wondering just why am I still in my pyjamas at noon/not up to cooking a meal from scratch/ready to bite someone’s head off.  It also means that they can try and help me as much as they can, help that is often much needed.  For others that I see from time to time I limit it to letting them know I’m having a good day/week/month or not. I think my favourite response is ‘not too good at the moment but I’m hopeful that will change soon’.   I know that some people are a little taken aback when they hear something other than the standard reply of ‘fine thank you’, but so what?  They asked the question, if they can’t handle the answer well that’s their problem.

So just how am I feeling today?

Honestly?

I feel rotten!

This is pretty much the norm at the moment.  I have been off work sick since January, when I was admitted into hospital, and since then I have been waiting for a new treatment regime that should hopefully include a drug called Abatacept or Orencia.  This has to be applied for and apparently my local PCT are dragging their feet over any funding decisions right now; my consultant expected to have heard back weeks ago, his registrar promised it would be last week at the latest but I’m still here, waiting and feeling a little bit worse every day.  Today, for instance, the joints in my left arm have gone from feeling a bit sore and tender to me barely being able to move them – shoulder, elbow, wrist and fingers.  In fact, my elbow is locked at a 120 degree angle and won’t straighten.  Strangely enough, this makes it easier for some people to understand that I am actually ill, since they can see an actual physical problem.  I just hope that news of this treatment comes before it is more than obvious.

L

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