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Posts Tagged ‘Feeling Good’

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.

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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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I thought I’d post a¬†more thorough¬†update on how things have been since my first Infliximab infusion last week, especially since most of it is positive.¬†I noticed almost straight away, the very next day,¬†that I had less pain and was able to move better: things that I had been finding hard, such as sitting up in bed or standing from a chair, just felt that little bit easier and have remained so. I’ve also noticed a slight decrease in swelling around certain joints, my left elbow is straighter and my knees are less restricted. This improvement has been maintained each day and, rather than the rollercoaster of good days and bad that¬†I had previously¬†been stuck on, I seem to have reached an even keel, which is brilliant.

This stability has enabled me to stick to¬†a better¬†daily¬†routine, including with my Physiotherapy exercises. I now have¬†set times for my sessions and¬†have even been able to increase the number of repetitions of some of the easier exercises, without suffering for it. I try and push myself a little bit harder each day, but know to stop when I feel the strain not after it, and this seems to be working. My arms in particular are moving much better than they were and the spasms that I was experiencing in my neck / shoulder / collarbone area have definitely lessened, although it still feels like something is ‘catching’.¬† I also have a better range of movement in my neck, something that has been restricted for months and months!

I’m defintely getting stronger in my legs¬†and am able to bear more weight through my hips now too; I even managed to raise my leg off the bed when lying flat for the first time the other day – an exercise that I’d had particular trouble with – and I’m gradually increasing how long I can hold it there for. Not being able to do this had been upsetting me, so¬†to me this is¬†a big¬†sign of improvement. I still have the muscle wastage at the tops of my legs and around my hips, but I know this is something that will take time to recover and at least it isn’t any worse. I’ve just started to add some resistance exercises to my lower body pyhsio, using therabands, so this should help build up some strength and muscle too. I’m really pleased now¬†that I pushed through the pain and made myself exercise¬†and I’m even more determined to keep it up and not slip back into bad habits. Who knows, maybe I’ll be lifting weights next?! ūüėõ

Walking-wise, I am still mainly using the zimmer frame to get about and managing quite well with it,¬†but I am at least using the crutches every now and again: I chanced a short walk around a shop on them the other day, which was an achievement in itself, although I felt a bit wobbly and it wore me out more than I expected.¬†I’ve been able to manage the stairs a few times (with help), on the crutches¬†too¬†and so have¬†had a few evenings downstairs, which is great. Not only does it mean a change of scenery and better zimmering space, but I’m able to pop in to say hello to my ‘furbaby’ Jasper the rabbit, who I miss like mad. I’m hoping that things are going to get better and better from here, that I’ll be able to use the crutches a little bit more every day and to go downstairs once a day too. I have three weeks until our Dublin trip and it would be great if I could manage with crutches alone.

I still can’t say if all this is thanks to the Infliximab / Remicade or the IV steroids, but any relief, any improvement is a welcome thing.¬† Despite not wanting to get my hopes up too much, I at least feel pretty optimistic about the new medication and I think that’s allowed. The only bad day I have had since starting¬†it has been¬†today actually. I woke up this morning with a very sore mouth and swollen tongue, (which has¬†become increasingly worse), and when I looked in the mirror I had several ulcers/sores on my gums and a strange raised rash-type thing covering my tongue. I’ve also been feeling really weak and shaky, my pulse is racing and I’m exhausted, so for the first time since being in hospital I have slept during the day and am currently curled up on our sofa with a blanket.¬† From the information I was given, it looks like it could be a side effect of the Infliximab or of¬†my immune system being wiped out by it; but hopefully, like so many of these things, it will just be a minor blip and disappear as fast as it came.

At least I can finally say there have been more good days than bad ūüôā

L

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This weekend has been wonderful for lifting the spirits.¬†Yesterday, I went for a short drive to town, which happens to be on the coast. I only stayed in the car, while the boyfriend nipped in and out of shops on the retail parks, but it was nice to get some fresh air and see the world flying by, instead of being stuck inside.¬†Saturday was also both my Mum’s and my Niece’s birthdays and I was looking forward to spending some time with them today; making plans for the afternoon ahead, wrapping presents, buying balloons and special treats.

My brother brought my niece to visit this afternoon and stayed for Sunday dinner. They don’t live locally and I don’t see as much of them as I’d like to, so this was even more of a treat.¬† It was her first birthday and even¬†I can’t believe how fast that first year has flown, she’s turning into a little individual and it’s lovely to see.¬† She opened her presents, had a play with her new toys and¬†the helium balloon we’d bought her,¬†then we all took turns in having a cuddle with the little wriggler; she will be walking soon and already speedy in getting about!¬†After dinner, we all drove to my Mum’s to wish her Happy Birthday with some cuddles from her grandaughter. I hadn’t seen my mum since being discharged from the hospital two weeks ago and I¬† admit I was in need of some cuddles too hehe (You’re never too old!).

It was a struggle getting to/from the car on the crutches but once I was inside I at least had a ‘proper’ chair to sit on – I’ve mentioned the carers that visit me at home keep complaining about our sofa being too low and wanting me to purchase a special armchair… well I had a brainwave last night.¬† My nan had one such chair and when she passed away, four years ago, we couldn’t bear to part with it and it has sat in my sister’s bedroom ever since. It is absolutely perfect for me right now, so we have brought it home for me to sit in during the day. My nan was always a huge support to me when she was alive, I talked to her a lot about my illness and she would try anything she could to bring me relief – from adding me to the prayer lists at Church and¬†bringing me Holy water from Lourdes, to looking into alternative therapies, treatments or foods¬†and buying me useful gadgets to take the pressure off my joints. I think she¬†would be really pleased to think that something of hers is helping me now;¬†and sitting here I feel like she is with me somehow.

So a lovely weekend in all, spent with most of my favourite people. It’s amazing how these times can have such a healing effect on the body and the soul, even considering how much it has taken out of me physically¬†(and believe me, I am exhausted now!)

I hope I don’t suffer for it too much tomorrow, but even so it will have been worth it ūüôā

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! ūüôā

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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As I mentioned in my last post, I have had more good days than bad this week and am feeling much better in myself, even if the joint pain and swelling is still there.

This could be down to the Orencia and Methotrexate combination¬†I started at the end of June; I have had three infusions so far and my next one is scheduled for August 25th.¬† I was sure that I felt a difference after the first, I had more energy and even managed to have a dance at my friend’s wedding a couple of days later. However, at my last infusion, my rheumy was concerned that my test results were actually getting worse, which of course doesn’t fit.¬† I was confused ¬†but decided to listen to my body and take every day for what it was; time would tell in the end.

I have read of other people who experienced an increase in wellbeing and energy levels, whilst being treated with Orencia, despite still¬†having active disease and joint involvement.¬†¬†Perhaps this is the case for me, or maybe it just takes¬†little longer to dampen down the inflammation?¬† But there is another factor that could explain my current ‘wellness’ and that is where the dilemma comes into play:

Both times I have been on the better side I have been taking 20mg of Prednisolone, which I initially tried to taper off.¬† The most recent increase to 20mg¬†was just under two weeks ago and I’m still currently taking it, grateful for some relief.¬† We all know how effective Prednisolone is at providing this short-term relief so it would seem that this is obviously to thank for my good days (in part at the very least).¬†

But my worry is, how are we supposed to know how well a new drug is working for us if we ‘mask’ our symptoms and disease activity by taking Prednisolone and even pain killers?¬† I know that the theory is to taper off the steroids after so long on the new treatment to see if it ‘holds’ things at bay, but how disappointing to go through months of treatment, convinced that it is working and find out that it was only the Prednisolone doing its stuff, not to mention the¬†frustration of having to do it all over again with another drug.

I’m not suggesting we shouldn’t use steroids and pain killers to tide us over the worst times; in fact, I don’t even¬†want to think how¬†bad¬†I’d feel without them!¬† I just wish there was an easier way.¬† It’s hard to explain to people that see me looking a little better and want to enthuse about my new treatment, that it might not be down to that after all – just a pred boost.¬† Speaking of which, I saw my manager while I was out yesterday and immediately felt guilt ridden.¬† There I am, out and about, yet unable to let them know even a general idea of when I’ll be fit to return to work.

This doesnt mean I have given up on the Orencia working for me. ¬†I’m probably being a bit impatient; after all, I was told it could take 3-6 months to really feel any benefits and I’m not even at the two month mark yet.¬† I just don’t want to have to depend on the Prednisolone for good days over the next few months and I want to be able to tell whether my new treatment is helping or not – even a general idea would be good.¬†If only scientists could produce a similar drug to Prednisolone, without all the horrible side effects, all of our problems would be solved.

It’s a battle of wills, but we must keep fighting.

L

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Just a mini post.

I’ve had a couple of good days this week; not sure what I owe them to but hey, I’m not complaining.¬† Today I went on a bus into town for the first time in… well a long time!¬† I went with my boyfriend’s grandma and she moves at my pace so that was reassuring.¬† We had a wander round the little shops and then stopped for some lunch and a warm drink before heading back, but I was out of the house for about three hours and it felt good!

I’m tired now, but worth it tired.¬† Although, I think I did have a mix up with my painkillers – we were out when I was due a dose and I missed it and couldn’t remember whether I took it when I got back (brain fog), so just taking my next one before bed.¬† This means I could have missed a dose, or maybe two…oops. I’ll have to try and take one during the night because the other day when I missed a dose it took it’s toll the next day.

I’ve now got my pyjamas on, my feet up,¬†with a lovely¬†cup of Horlicks, watching¬†a cute¬†kids’ film called Marmaduke (a must see for any dog lover!), then it’s an early night for me.

All in all a good day; maybe things are on the up ūüôā

L

Ps. I’m also blaming Mtx ‘Brain Fog’ for the fact that¬†I poured water from the kettle over my cereal this morning, instead of into my teacup… :\

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