Feeds:
Posts
Comments

Posts Tagged ‘Morphine’

I haven’t posted a real update for a while, so thought I’d do that before I start on a few topics that I’d like to discuss over the coming weeks.

I think it’s safe to say that I am responding well to the Infliximab infusions, as I am relatively pain free these days and all joints are mobile, with little or no swelling. I am still taking 60mg of Morphine twice a day (down from 140mg), but am working with my GP to reduce this. We’ve come to a bit of a standstill at the moment because I do get some pain from my reoccurring Gastritis, but once this is under control with the stronger stomach medication, I aim to become Morphine-free and hopefully will have no underlying pain.

The Gastritis is probably my main problem right now. I had my first episode of this earlier in the year, just before my major flare at the end of January, and it is thought that the Gastritis contributed to this, since the stomach inflammation meant that I was not absorbing my Still’s medication adequately. I now take Esomeprazole and Motilium three times a day and also avoid acidic food and drink, but still it niggles away. A friend, with Still’s and similar gastric trouble, has suggested that it could be related to the IV biologics that we take and so I’m going to look into this at some point. If you have experienced anything similar whilst on any of the IV biologics, please comment – it would be interesting to see if this is the case.

The Infliximab infusions themselves are going well, although I did suffer a bit towards the end of the eight week interval. I noticed that rash, temperatures and some joint pain returned at about five-six weeks post-infusion. As a result, my Rheumatologist has prescribed it every six weeks instead. I haven’t experienced any major side effects from the drug apart from getting a very sore, ulcerated mouth a couple of weeks later. I do seem to be more prone to infection in general though, something I never really noticed with any of the other medications, despite their immuno-suppressant action. I currently have the first cold and throat infection I’ve had for years, so I’m being extra careful.

As I have briefly mentioned in a previous post, I am having some problems with my finger and hand joints being very stiff and painful, especially first thing in the morning. This is unusual in itself, since any previous hand involvement has always been during times of full-blown flare. My only thought is that six months on crutches has put extra pressure on those particular joints, so hopefully it will only be temporary… especially now that I am off crutches altogether! Yep, I felt that they were holding me back on our recent trip to Paris and so threw them into the River Seine (not literally). I need a bit of support from people at times and have the odd spell of vertigo, where my brain seems to forget how to balance without sticks, but I am finally back on my feet and feel like I can only get stronger from here.

I have also managed to get down to 5mg of Prednisolone, the lowest I’ve been since about 2007 if I remember rightly. I would love to get off the stuff completely of course, but for now I am happy with this low maintenance dose and would prefer to get rid of the Morphine. I don’t want to be doing too much too soon, in case I put all this success into¬†jeopardy, plus I have to save some goals for the future right? ūüėČ

All in all, things seem to be on the up (touch wood), but don’t worry – I’ll still find plenty to post about!

Here’s to Infliximab and the future,

Cin cin

L

Ps I have updated the ‘My Story’ page and also added some new Articles to the Articles section.

Advertisements

Read Full Post »

{Backdated Post}

Not much to report for today. I had another session of Physiotherapy with the walker this morning, with a different Physio, who discovered that I had a physical reason for not being able to lift my foot from the floor. The swelling and inflammation in my hip was causing a slight impingement of the muscle, making it feel like the joint was loose; this should settle down once I have had the procedure to inject cortisone into the joint tomorrow, so nothing to be too concerned about for now. I still feel like I have made some progress with my walking though and was glad that I kept up with the exercises that they left me yesterday. I have been making a mental note to do a couple each hour or so and soon noticed a difference in how my knees/ankles were moving. I might not be able to lift that foot from the floor yet, but I was at least taking steps in a more natural way than before and following through with a good knee bend Рbaby steps, but all in the right direction.

My Rheumy visited later on in the afternoon and was pleased to see me on my feet, making the most of being able to stand again! He agreed with the Physio, that there was a physical reason for me not being able to lift the foot, and said it should benefit from the procedure tomorrow. I am due to have cortisone injected into both hip joints via ultrasound guidance, nothing too¬†major but because it is such a deep joint it has to be done using local anaesthetic, in a sterile environment and with a lot of preparation. I am a little concerned this time round; when I had something similar last week, I was in so much pain that I probably tolerated more than I would usually, so maybe this time will hurt? I’m not having it done by¬†the radiographer either, but my Rheumy’s Registrar, who doesn’t fill me with a lot of confidence (not that¬†I doubt his competency, I think it is just his manner). I just have to tell myself that the overall¬†benefits will be worth the pain, and remind myself that anything that can prevent that original pain coming through again has to be worthwhile.

I had a number of visitors today, which was lovely; my boyfriend’s mum and grandma came for a couple of hours in the afternoon and then my dad and boyfriend came in the evening. They found a wheelchair and took me for a ride round the (huge) hospital, which doesn’t sound like much but it was great to escape the confines of my room and get a breath of semi-fresh air from passing the front entrance, shame about the smokers! My boyfriend was allowed to stay past visiting hours so that he could help me wash and change for bed, he even shaved my legs for me bless him. Despite having to swallow my pride on numerous occasions during my stay, I¬†was not ready¬†to show off my hairy leggedness during the procedure tomorrow!

I got a bit emotional this evening too; I don’t know if it’s because of¬†the extra¬†morphine but I suddenly felt quite ‘loved up’ and started¬†telling everyone I loved them and¬†how¬†grateful I was for their support. I know I will probably cringe at this tomorrow, since¬†I find it hard to be open with my feelings a lot of the time. Even though they run deep and I want people to know just how much I love and appreciate them, it isn’t always easy to just say so, so maybe I should be thankful to the morphine for giving me the opportunity.

Because, I know I keep saying it, but if it wasn’t for the people I have around me, this would be so much harder; I’m not sure how I would cope.

L

Read Full Post »

{Backdated Post}

I woke up some time around 6.00am, Thursday morning, on a different ward – The Emergency Admissions Unit (H3). My boyfriend and his mum must have gone home, but there was a young¬†doctor sitting on the edge of my bed ready to ask the usual admission questions about what had led up to me being there. I was slipping in and out of sleep and I’m not sure how much sense I made, but I’m sure I had a good go at getting things across. The nurses from A&E had already filled everyone in on my level of pain and immobility; I relaxed believing I’d now get the right care.

I was woken again a little later on, by a nurse that¬†I’ll call ‘nurse M’, telling me she needed to change the bed and I would have to get up and sit in the chair. I was in a lot of pain again by this time and tried to explain this to her, simply expecting assistance or an alternative approach.¬†¬†Instead, nurse M gave me a very scathing look – “so you can’t get up at all?” she asked, “how did you get to the hospital, in an ambulance?” I tried to explain exactly how difficult it had been to get to the hospital and how¬†we did it out of sheer desperation,¬†but she interrupted – “So you’re saying to me that last night you managed to walk but this morning you can’t?” Nurse M raised her eyebrows and went on arguing with me, without letting me explain, until she finally said “fine, if you want to lie in your own filth all day in a dirty bed that’s entirely up to you!” She turned and walked away, holding her hand in the air to silence my answer.

I was shocked and upset by her attitude, especially since I had done nothing to provoke it – it’s not exactly my nature to be awkward or cause offense,¬†quite the opposite really.¬†The young doctor had witnessed it all and approached nurse M, explaining that I had a severe longterm¬†medical condition, was in a lot of pain and being kept immobile on the advice of the doctors and that she should learn to be more sensitive. Nurse M even had the nerve to shrug and walk away from her, mumbling ‘whatever’; she was obviously used to intimidating people and felt herself above the younger doctor.¬† I realised at this point that nurse M was going to be a problem, I just didn’t realise how much.

The next few hours were torture, literally. My pain returned to the level of the previous evening and I became quite distressed; yet my calls for help were ignored by both nurse M and the other staff. I was aware of her discussing me with them and felt that she was influencing their opinion of me, but have no idea why she took such an obvious dislike to me. I also overheard a lot of other things. For instance, once she discovered that I was due to have my Tocilizumab infusion that morning, she complained that she did not want me on her ward as it was an expensive drug; even when another nurse explained that it was paid for, prescribed and waiting for me on my regular ward she was adamant I leave.

Feeling desperate for the toilet, I asked for assistance and was offered a comode despite the fact the doctors had told them to keep me in bed. They were still due to investigate the hip, as well as some back pain, and until we had answers I was supposed to be kept immobile. I was too overwhelmed with everything to argue though and with assistance (and a helluva lot of screaming) I managed to go. Unfortunately, when I buzzed to be helped back to bed, it was nurse M that came and she wasn’t happy. She told me she couldn’t offer me any physical support as she ‘had her own problems’ having¬†been off work for four months with a bad back; I requested that she find someone else to assist me, as I wouldn’t manage without, but she just said “come on, let’s just get it over with”.

She offered me her hand and I put some of my weight through it but was hardly off the comode when she let me fall and shouted out, grabbing her back. The curtain was whipped back with me lying prone – half on the bed and with my pants halfway down – as she made a song and dance,¬†letting everyone know how ‘that girl’ had put her back out. The staff crowded round her, telling her to go and rest and offering her pain relief, but I was left to struggle and sort myself out; totally humiliated and in excruciating pain, not knowing if I’d done any further damage. Nobody cared. And nurse M made a point of complaining in front of me for the rest of my time there too.

There is more that I could say about nurse M’s mistreatment and bad attitude, but I think this is enough to give you an idea of how serious things were. I have already spoken with PALS – the Patient Advice and Liason Service – was visited by them during the rest of my stay and am in the process of putting together a formal complaint against her. Not only because I want an apology for myself, but I worry that if she treated me in this way, (when I can at least speak up for myself a little), how is she treating people who are more vulnerable and can’t communicate such treatment to others? She is working on a ward with a high intake of patients and¬†I wonder how many of them¬†are experiencing something similar to what I did, it’s frightening and totally inexcusable. No wonder both my grandmothers were terrified of being admitted to hospital and preferred to suffer in the comfort of their own home. The care you can receive in hospital is totally unpredictable, ranging from superb to abuse; I have been aware of this for a while, but this time I’m determined to do something about it. /rant over

The¬†hours passed slowly.¬†Throughout¬†most of this, I was in some of the worst pain I have ever experienced¬†and as a result was constantly crying, whimpering¬†and groaning (I don’t mean to sound dramatic but that’s how it was – pain does funny things to you). I was told that I wasn’t due any pain relief, although we found this not to be the case later on. Nobody paid any attention to me; I was totally alone, humiliated, confused, scared… especially as there seemed to be no sign of anything changing and the pain just got worse and worse. I became totally desperate and tried to text my boyfriend’s mum, asking her to ring my infusion ward to see if I could be transferred there as soon as possible. They knew me there, they knew I wouldn’t play on or exaggerate my pain/immobility, would be more understanding… anything to get me away from all this.

Then my phone rang and it was my mum; she had phoned the ward to see how I was and had been told I was fine but had had ‘a few tears’. Realising this didn’t sound like me at all she’d decided to speak to me herself… she was shocked by what she heard. I was so distraught with the whole situation by this point¬†that all I could do was sob down the phone. Like all good mums, she promised she would sort it out for me and I knew that she would. It turns out that she rang my Rheumy’s secretary (who we have a good rapport with), and explained what was going on, in tears herself by this point. My rheumy was at a conference that day, but the secretary sent his registrar Evin down almost immediately.

I have never been so happy to see a Rheumatologist! Things turned completely on their head from that point but I’m still a bit traumatised by what I went through. I was given pain relief immediately, after a seven hour gap, but the pain was that advanced that it took further doses to get to a bearable level. The registrar examined me, spoke to my rheumy over the phone¬†and came up with a plan of action straight away. My friend and my mum came to see me and although the pain was better by then, I think it still came as a shock to them. Strangely, I didn’t see nurse M again – I’m guessing she decided to keep her distance.

The rest of the day is a¬†massive blur, as I was drifting in and out of sleep.¬†I had multiple Xrays at one point, of my hips,¬†neck and spine and¬†heard them mumbling things about lines and shadows and necrosis… But the important thing was¬†that¬†my pain was starting to be more controlled; my mum and friend were there and my boyfriend would join me later… I¬†felt safe.

I went straight from Xray to Ward J6, the ward next door to my infusion ward and a ward I have spent time on before. Again, I don’t really remember much as I was so out of it, but I finally felt¬†I was going to get the care I needed.

L

Read Full Post »