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Posts Tagged ‘Fun Times’

Our friends’ campsite wedding and barbeque reception went really well yesterday. It was a fun idea and I was able to pace myself thankfully, although I have to admit that I spent the majority of the evening in a camping chair by the fire, wrapped up in a blanket that I sneaked out of the hotel – of course, I returned it later!  0:)

We had originally meant to stay on the campsite in a ‘pod’ (basically a wooden tent), but were double booked and so changed to a nearby hotel instead.  I think this was probably fate.  I was sooo glad to be able to go back to a nice warm bed and a cup of tea afterwards, especially as it was raining quite hard as well as being freezing cold.  Don’t think my poor bones would have appreciated waking up on a wooden floor this morning either; in fact, it doesn’t bear thinking about!

The full does of Tramadol helped the first day I took it, but for some reason it now doesn’t feel any different to taking half as I was before.  It takes the edge of some joint pain but my left arm is still extremely painful, especially during the night. I’ll keep up with it until I see my GP again though.

I’m absolutely shattered, so I shall leave it short and sweet.

Hope everyone had a good weekend,

L

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I didn’t want to waffle on too much about myself again, but since we made some progress at the GPs yesterday I thought I should give an update.  The GP wasn’t surprised about the way I’d been treated at the local hospital and even admitted that he had seen some horrendous treatment there himself. He fully supported my decision to discharge myself and said we needed a plan that would help me to feel better without going back. 

First off, he would arrange for an outpatient CT Scan just to make sure I have no blood clot, although he agreed with me that my symptoms were more flare related.  As for the anaemia, he feels certain that it is Anaemia of Chronic Disease and that we can afford just to keep an eye on it for now. If my haemoglobin does drop any lower than it’s current 8.0, I am to mention to it to my rheumatologist and get the transfusion with him.

Finally, since the main thing that is bothering me right now is pain, we discussed my painkillers.  I currently take Tramadol and have refused anything stronger in the past because I worry about masking my symptoms too much and also about becoming reliant on/resistant to pain medication.  I don’t even take the full dose that I am allowed, even with the amount of pain I’ve got at the moment.  Anyway, my GP made me agree to take the full dose every day this week to see if it did take the edge off and, if not, said he would prescribe something stronger when I see him in a week’s time.  He also prescribed Naproxen, which is something I took way back in the early days of my diagnoses and never bothered with since; but I’m willing to give anything a go right now, even if just for a little more relief and mobility.

So there we are, it felt like progress to me and I at least have an appointment with him again next week (without having to phone days in a row).  It should be enough to tide me over until my next infusion on the 25th August, when I will see my rheumy again – he’s currently on holiday.  I’ve put my Prednisolone up again, which takes me back to the worries I had previously, but I need relief.

My next ‘worry’ is that we are going to Oxford for the weekend later today, as our friends are getting married tomorrow.  It seems crazy in a way to even contemplate it, but I guess it’s just one of those things you have to try and get through as best you can; plus, I’m really looking forward to it! I’ve never been to Oxford before, so that in itself will be nice. The Ceremony is quite early in the morning and then they are having a campsite barbeque reception – which will be a new experience too! Hopefully, I’ll be able to fit in some rests back at the hotel and will just have to pace myself the rest of the time, but at least I know I will be looked after.

Of course I wish I didn’t have all this to worry about, but you have to make the most of what you’ve got and, besides, I hate having to put my life on hold.  So, here’s to the happy couple – and to enjoying our lives despite this horrible illness, just doing so at our own pace.

L

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That's Voldemort, not another photo of zombie-esque moi, although I can see how you would get confused. (I have more hair)

After yesterday’s long-winded rant on Methotrexate I thought I’d better balance things out a bit, to show it isn’t all doom and gloom!

Today was a slow starter but by the afternoon I was feeling pretty good, meaning that I didn’t have to cancel on the plans I had to go and watch the new Harry Potter film at the cinema with a couple of friends.  The film was amazing, I was so absorbed in it that I didn’t even notice my knees seizing up and by the end of the film I didn’t even care. Far more pressing things to worry about, like the characters’  “19 years later” transformation!

We headed off to a nice village pub for food afterwards, as always I ate far too much but you have to have some guilty pleasures… mine was the Baked Toffee Cheesecake, yum.

Very sleepy now.

L

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Well, after all that worrying about how I was going to physically manage my friend’s three day wedding event, things turned out pretty well and I had a fantastic time!  I practically bounced out of bed each morning and felt much like my old self; in fact, I didn’t struggle at all.  I had expected that, after such a long day with so much standing etc, I would have to excuse myself from the evening reception quite early… but no, I was still there at midnight and even managed a dance or two. Unbelievable!

I don’t want to be too hasty in claiming that the Orencia infusion has worked a miracle; friends have suggested I may be running on adrenaline or even some sort of placebo effect and they may be right.  BUT… I am feeling stronger in myself, as if some sort of energy / essence that had been lost, has returned.  The joints are still stiff, some are swollen but there is less pain and I’ve always said that the fatigue is the hardest thing to deal with, so to me there is a noticeable difference and I do believe that I felt it straight away.

First there was the warm, tipsy, glow I felt after the infusion and the sensation that I could clench my hands again and feel some strength in them, while we were driving home.  Then, when I was trying to drift off to sleep, I felt what I can only describe as lots of little fireworks in my bloodstream – as if I could feel the stuff circulating in my veins.  Perhaps I have an over active imagination but that’s exactly what I felt. 

When my alarm went off at 8.00am the next day, I felt ready to take on the world; there was no slow rolling over and unfolding myself painfully out of bed, testing out my wobbly legs and struggling to heave myself up. I didn’t need to wait for my painkillers to kick in before taking a shower, dressing and managing the stairs.  Instead, I did those things the way most people take for granted – without even thinking – and even decided that I would NOT increase my dose of Prednisolone to 40mg after all, I felt so good that I was sure I wouldn’t need it.

And I didn’t need it.  And even now, when it’s all over and everything should have hit me / caught up with me, I am still feeling pretty good!  I don’t really know what to think… is it too early to call this a miracle drug? Obviously, I don’t want to get my hopes up to much but – 😀

Whatever it’s down to, I hope it lasts!

L

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A week today my very good friend will be getting married and I will hopefully be her bridesmaid. 

I am, however, increasingly concerned as to how I am going to manage this three day event, despite my efforts to think positive and rest and blah blah that people keep advising me. 

I don’t want to turn the focus of this blog to my own symptoms, but they are sure hard to ignore right now.  Today has been one long power nap and I feel that after benefiting from the steroid injections for about ten days, things are starting to fall apart at the seams again – the left knee is swollen, fingers are stiff and the left elbow locked at 120 degrees and things just generally hurt.  Plus I have this pain in my chest again, although it is different from last time when I was admitted with Pericarditis.  I have a feeling that the awkward position of my elbow is putting extra strain on the muscles in my shoulder/chest and causing the pain, but yowser it hurts and is distracting me from the things I should be doing in preparation for next week.

I mean, I have my outfits sorted but my hair and nails could do with some attention and I need to go to the shops for cards etc, decide on a wedding gift, sort the dogsitter out with some food, book transport for myself and the photographer and ohmygodaboutamillionotherthings… but I am just about managing to sit up and type this.  I am usually so organised too, Still’s Disease robs me of that ability.

I really hope that on top of everything else, I don’t go and forget something.

At least I don’t have the rings.

L

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It’s a little later than I was hoping for: Thursday 30th June, which is just two days before the wedding(s) and the day before we leave for the venue.  In fact, my friend will be arriving from Cornwall to stay with us at some point that day (hopefully late afternoon!), so it is going to be mega hectic.  My appointment is quite early in the morning but I’m not sure how long I will be there for and how I am going to feel after the infusion – starting a new drug is always risky – but at the same time I don’t want to put it off when I have been looking forward to it for so long.

I guess my main disappointment is that there is virtually no chance of feeling any benefit from the Orencia before the wedding now, so I will have to hope that the cortisone shots will hold everything back until then.  I have been feeling much better this week so I just need it to last while I get through those fun-packed few days; even if I end up crashing afterwards. 

I hate the fact that I have to focus so much on how I might feel or what might happen, rather than just being able to look forward to it.  It is my good friend’s wedding; the first of  my friends to get married and it is so exciting that I want my heart to be in it one hundred percent.

But we can only do as much as we can.

L

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As expected, the joint injections are starting to kick  in and have given me some relief and better movement all round.  I made the most of this by spending time with some good friends this evening, one of whom is on a flying visit from Spain, where she teaches English.  It wasn’t a wild affair, we just sat around a bonfire in her back garden chatting and ordered some takeaway food; my first Chinese meal in a long time and only because the restaurant gave the option to prepare food without MSG – it was pretty tasty too.

So my feelings today are that sometimes we do need a little extra help from steroids to control our flares, especially if it gives us the opportunity to do simple things like enjoy good company, relax and forget about having an illness for a change.  Spending time with friends can be theraputic in its own way, as they say laughter is the best medicine and I think that  the same can be said for hugs too.

L

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