I did manage to get some rest yesterday and, after an early night, woke up feeling better than I have the past few days. For some reason, since Monday I have had this edgy feeling (a bit like restless legs but all over) and I’m not really sure what is causing it. The steroid injections I had before New York are also starting to wear off and so I can feel the familiar tightness returning to my joints; mainly my right knee and hip. I look a sight trying to get out of the car I can tell you.
But I needed to forget all that because I had a fun-filled day ahead; firstly, watching my local football team lose once again (booo!) and then an evening watching the comedian Peter Kay. They do say that laughter is the best medicine and I believe there is a lot of truth to that; I love having a good giggle at a funny film or comedy show and tonight was no exception.
I particularly liked his take on doctors’ receptionists and how they (many of them at least) stand between the patient and doctor like guard dogs, determining who does or doesn’t get to see them as if they are qualified in making medical decisions. He also joked about not being surprised so many people turn to the internet instead, googling their symptoms and self-diagnosing, when it takes a month to get an doctor’s appointment. He’s obviously been doing his research!
Best of all though, were his misheard lyrics: KD Lang singing about ‘arseholes’ and Michael Jackson claiming ‘your burgers are the best’. It reminded me how for months I thought Lady Ga Ga was singing about ‘my little bedroom man’. I’ll let you work that one out!
Great night, only problem is my sides are aching now 😛
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I’ve got a busy few days ahead so not sure when I’ll be able to post updates.
Firstly, tomorrow I’m going for my fourth Orencia / Abatacept infusion in Manchester, which means another blood test and hopefully a visit from my rheumy. I’m interested to see what the results will show. I’m not really sure what to expect from them, as I’ve been up and down on a physical rollercoaster since the last ones four weeks ago – just before I ended up in hospital. If they’re better, then great but are they better because of the Orencia or because of the Prednisolone? If worse, well where does that leave me?
Results aside, I do feel better in some ways – like I’ve said before, I have more energy most of the time and I am up and about, able to do chores and things nearly every day. But I am also in pain every day, in numerous joints, especially my left shoulder, elbow, wrist and fingers. Most days I can barely move this arm; the elbow has been locked since May and is showing no signs of improvement, even when I increase the Prednisolone. I guess I’ve just become accustomed to the fact that it hurts and doesn’t work properly, although I know that’s not right.
Hopefully, I’ll get more answers and a plan of action tomorrow.
On Friday I’m having minor surgery on my hidrandenitis abscess/gland/tracts/scar tissue – all of which is hopefully going to be removed and then stitched back up. I’m sure he said it would be stitched back up; sometimes they leave the wound open to heal from the inside but I want those stitches… I’m still feeling a bit nervous about it all, I guess it’s unknown territory for me. What I have to remind myself of is all the misery it’s caused, having to put up with the damn thing for over a year now, and how sore and uncomfortable I’ve been every day because of it. Hopefully, this will be a means to an end of all that.
I’ll be glad when it’s all over and I can spend the weekend relaxing. We should actually be celebrating, because Friday marks four years with my wonderful boyfriend, but I guess that will have to be put on hold unless he has something up his sleeve…
For now, I’m just making the most of time at home and looking forward to film night with my friend – who is bringing Zoo Keeper and Mr Popper’s Penguins round later.
You’re never too old for Penguins..
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Posted in Uncategorized, tagged Flare, Friends and Family, Fun Times, GP, Methotrexate, Orencia, Pain, Painkillers, Prednisolone, Update on August 9, 2011|
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This time last week I was preparing to make my great escape from the hospital. Thankfully, I haven’t been any worse since discharging myself, or for not actually receiving the Blood Transfusion I went in for; in fact, if anything, I’ve been on the better side.
I know this is because of two main things:
- I increased my Prednisolone back to 20mg after the hospital stay, so terrified was I of needing to go back! I should mention that my Rheumy gives me permission to do this. After many years dealing with Still’s I have learnt to judge when I need to increase my steroids and always tend to try and keep it as low as possible, due to my love/hate relationship with the stuff. I am very careful with my tapering too.
- The GP made me agree to take my full dose of Tramadol for pain relief, which has taken the worst of the pain away at least. I’ve also been taking the Naproxen he prescribed as a longshot.
These weren’t easy decisions for me to make. I really don’t like dosing myself up every day and so have been keeping it all to a minimum for too long, which hasn’t done me any favours. I realise this now; I was being stubborn and I wouldn’t advise it. I needed this relief and, hopefully, it will only be short term while we get the Still’s under control again.
The Prednisolone must be doing its thing because I am managing to get out of bed on my own in the morning and am getting about okay; the chest pain and breathlessness has eased too. My joints still aren’t happy though, with the odd grumble from my hips, stiffening of both knees and then of course, my left elbow and shoulder joints, which are terribly hot, stiff and swollen and seem to be unphased by any treatment – even the cortisone shots I had a while back. It’s all bearable though.
On an even more positive note, we had a couple of friends round last night to discuss our trip to New York next month. Five of us are going to celebrate a 30th Birthday, but one friend lives in Spain so she couldn’t make it round obviously! We spent the time talking about what we want to see while we’re there and, although I know it may not be easy physically, I am extremely excited about it all. I don’t care if I have to pump myself up with Prednisolone and painkillers, I don’t want to miss a thing!
Hopefully, I’ll be feeling some definite improvement from the Orencia and Methotrexate by then anyway. I am now on week 6 of Orencia plus will be taking my 5th dose of Mtx tomorrow evening and I was told it usually takes 8-12 weeks for the two to be fully effective together. Until then, I’ll just carry on being a good girl and take what I need to give me a better quality of life… I promise doc!
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