Some Healing Family Time

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 🙂

L

Read Full Post »

Rollercoasters of a Different Kind

Usually, when I talk of rollercoasters, it’s in relation to the rollercoaster nature of this disease – the ups, downs, twists and turns of Still’s Disease… but today I’m talking about the real thing.

Yesterday, I fought fire with fire and went to Alton Towers.

Okay, so it probably isn’t the best thing to do when you’re flaring, BUT the thing is… I wanted to! I hate missing out on things because of the Still’s and I knew that I was coming to the end of the ‘steroid boost’, meaning the flare is probably going to get worse again from here unless the Tocilizumab is effective.

Plus, it was my friend’s 30th birthday and what better way to celebrate than fearing for your life (Being 30 doesn’t seem so bad after all that). I surprised myself by going on every ride apart from Nemesis; I didn’t think my wonky knee would appreciate the dangling and swinging about. At least on all of the other rides you are strapped in very securely and they are ‘steelies’, so very smooth coasters. My favourite was a ride called Air, a rollercoaster that you ride kind of lying on your front – actually very comfortable! – and which gives you the sensation of flying.

I must admit I am shattered today but it was worth it for all the laughing I did.

L

Read Full Post »

Laughter is the Best Medicine

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 😛

L

Read Full Post »

The Next Few Days…

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..

L

Read Full Post »

A Walk on the Wild Side

Things have been pretty stable since I increased the Prednisolone again a couple of weeks ago, I still have some pain and general wonkiness but it has been manageable.  So when my amazingly fantastic friend suggested an outing to the zoo yesterday, I didn’t even hesitate – I mean, Lions and Tigers and Bears…oh my!

We had a brilliant day, seeing all the animals (my favourites being the Lions and Red Panda  – the cute little fella in the picture ^), but the best thing was that I managed to keep up with all the walking, and we did quite a bit of that. In fact, I almost forgot about all the Still’s stuff and just felt like my ‘usual’ self.  Hopefully this is a good sign of things to come – it is only a month until we go to New York now after all 🙂

I have been a little extra tired and sore today, but that’s the price we have to pay sometimes and it’ll pass. The HS has been flaring up something rotten and I seem to be glued to hot compresses, but at least this time next week it should all be sorted out – if the surgery does go ahead.  It’s due to be another busy week actually, with my fourth infusion on the Thursday too. I’m hoping to see some improvement in the blood test results this time, to reflect how I feel, but once again  I wonder how will we know if it’s the Orencia or Prednisolone?

A conversation with my amazingly fantastic friend, at the zoo yesterday, got me wondering what animal I’d like to be / come back as in the ‘next life’ …it would have to be something fast and energetic, to make up for the lack of these qualities now – so maybe a little monkey that swings through the trees, or a sea lion, which look so carefree gliding through the water!

Any ideas?

L

Ps. Ketoprofen has now been added to the Treatment Section; next – Prednisolone!

Read Full Post »

Fun Friday

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 🙂

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…

Read Full Post »

Tuesday Check In

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:

1. 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.
2. 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!

L

Read Full Post »

Mini Update

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

Read Full Post »

GP Update and Weekend Wedding

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

Read Full Post »

It isn’t all doom and gloom…

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

Read Full Post »