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Archive for July, 2011

Today is the last day of July and Juvenile Arthritis Awareness Month; that doesn’t mean that I think we should relax our attempts to raise awareness but I still wanted to mark it by looking back at my own experiences. In a way it follows on from my post a few days ago, on children learning to cope with Juvenile Arthritis.

Sometimes, I look back at photographs of me as a small child smiling at the camera and feel sad, not for myself but for the person that little girl could have become; for all that I know she will have to face in her future.

I was too young to really understand the significance of what was going on throughout my first phase of illness; I just remember feeling unwell in exactly the same way I do now – with the fevers, fatigue and pain.  I must have known that I was different to other children in certain ways; after all, not every four year old needs a buggy because they can’t walk long distances, or wears a neck brace and leg splints, but I felt happy and secure in my infant world.

As a teenager and young adult it became more difficult; I mourned the loss of the life I’d had in my years of remission, the activities I had to give up and the new experiences I felt I was missing out on. I’d always had a head full of dreams and ambitions but I had to learn to adapt them to fit in with my limitations – instead of being active and sporty, I became academic; career plans and dreams of world travel and charity work fell on the back burner, but I found a job that I enjoyed and visited beautiful places closer to home. While other people sailed through life I plodded along slowly, a few steps behind, but always reaching my goals.

But it wasn’t the life I’d dreamed of and at times I was consumed by frustration at everything that this illness had taken away from me, before I’d even had chance to experience it.  I would find myself wondering where that little girl in the photograph, the younger me, would be if it wasn’t for Still’s Disease; what type of person would she be now if I’d never got sick? Surely, her life would be better without all this? Maybe she’d be prettier, more confident and successful – sailing through life with everyone else…

But then another part of me, (the part that’s like a slap in the face and tries to make me see sense when I’m feeling low), tells me that this isn’t neccessarily true and besides, if it wasn’t for everything that I’ve been through over the years I wouldn’t be the person I am today – and you know what, I actually quite like that person.  How different do I really want to be, truly?

Living with this disease has opened my eyes to so much that I may have failed to notice otherwise. Over the years, I’ve learnt to value the things that are really important to me in life, to try not to worry too much about the things that aren’t; to appreciate beauty and pleasure in the simplest things, to find the silver lining in every cloud and to treasure the most important thing of all – life itself.  I hope I’m right in saying that it’s made me a better, stronger person in many ways.

So I ask myself again, what would I really be like if I hadn’t gone through it all and would my life really be any better?  Of course, we’ll never know for sure, but there’s an equal chance that I may be worse off; that I wouldn’t be as content as I am right now, or as determined; that I wouldn’t be surrounded by so many wonderful people both in real life and online, know the value of real friendship and love. 

Perhaps things haven’t turned out too badly for that little girl after all.

After rethinking things in this way, I look at that photograph again and instead of feeling sadness I feel something closer to pride; I think of everything that little girl has had to face and yet she’s survived and come through it all, and most of the time she’s still smiling.

And I hope that others can learn to view things in this way too. Many people deal with chronic illness every day, we’ve all experienced that sense of loss and wondered what if? But we are who we are because of the things we go through. It may sound cliche, but every scar tells a story and whatever doesn’t kill us, really can make us stronger. Now if only we could transform that into physical strength, we’d all be superheroes.

L

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I’ve written about the rollercoaster nature of living with Still’s Disease before and it seems like I’ve taken a seat on the ‘Big One’ once again.  Last night I could barely move because I was in such pain; every joint was throbbing and painful, my muscles tender, chest sore with my heart racing and pounding in my ears, plus I was hot/clammy to touch.  I tried to just sleep but I just hurt too much and ended up getting upset. This had all come completely out of the blue at a time when I was trying to stay optmistic. In the end, I had to take a mild sleeping tablet – sleepless nights are even more unbearable when you’re in too much pain to even toss and turn.

I woke up this morning still in quite a bit of pain, but at least I was able to get out of bed and walk about on my own.  I hope this means that things will get a little bit better from here, or at least no worse; I was worried where they might be heading. My plan right now is to call my GP on Monday and explain to him the turn things have taken. He might take my next bloodtest a bit earlier to make sure things aren’t getting any worse and also to keep an eye on the folate levels, as I’m still convinced that the Methotrexate is playing a part in all this. Secondly, I think I need to reassess my pain killers because, as much as I despise relying on them, I need some relief right now.

We were supposed to be out celebrating a family birthday this evening but looks like I’ll have to give it a miss. *sigh*  But look on the bright side, I get to spend some extra time with Jack Bauer… oh and my boyfriend of course 😉

L

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Perhaps my bubble is about to burst...?

After everything that happened at the hospital yesterday, I was feeling pretty confused and disheartened, plus I was absolutely exhausted.  Hospital visits do this to me – so much energy is put into preparing myself for them: thinking of the things I need to discuss, prioritising a host of symptoms, making notes and then trying to make sure I express everything that I need to clearly… and then in the appointment itself, taking in what the consultant says, absorbing and digesting it, understanding what it means for me and thinking about the consequences of any decisions on the present and the future. 

When I’m flaring, I go to these appointments with a sense of anticipation, that maybe my doctor will have a new solution, a miracle up his sleeve that will make me feel better – something solid I can take away with me there and then.  Although, realistically, I know that this isn’t how the game of treating Still’s Disease goes – it’s more like snakes and ladders, just as you think you’re getting somewhere, you get sent sliding back down to the bottom – so perhaps I’m setting myself up for disappointment each time. We try to keep our discussions positive, but at the same time you can’t shake the feeling of uncertainty about it all and I always leave feeling like I’ve been through the wringer, with my mind whirling and body exhausted.

However, I woke up this morning feeling more like myself, determined not to let this latest setback get me down; yes, the things we discussed were worrying and confusing but at least I was feeling more able to do certain things and surely I need to make the most of that even if I can’t explain it. Maybe the bloodwork is just taking its time catching up, I don’t know, but I was happy just to carry on and know that my doctors were keeping an eye on things.

Morning and early afternoon passed by fine; I’d managed to get a few things done when I noticed I was getting quite a bit more pain in certain joints.  Half an hour later, I felt it was bad enough to require an additional dose of painkillers (I try and stick to 2 doses a day) and as my heart was racing too (156 is high even for me), I decided to have a bit of a nap.  I must have dozed off because it was teatime when I woke up, but I quickly realised that the pain had gone even worse, so much so I couldn’t lift my head from the pillow or move my arms from under the duvet, every inch of my body seemed to burn or throb with pain.

In the end, I needed help to even sit up in the bed and later to hobble about. My boyfriend’s parents were understanding, but I felt embarrassed and ashamed that they had to see me so helpless, especially when it came out of the blue. How can I explain it to them, if I don’t understand it myself? There are a number of thoughts floating round my head right now – could it just be that I’ve been building up for another Still’s flare these past few weeks, has the Methotrexate effected me in some way or maybe even the Orenia? Or has my mind been playing tricks on me all this time?

Do you think it’s possible to think yourself better, even if you’re not?  I was soo looking forward to starting Orencia that maybe I built my hopes up so much that I believed it was going to help and expected nothing less.  Perhaps I imagined the tipsiness, the tingling and the new strength and energy, getting through the wedding weekend on optimism and willpower alone. What if it has just been a case of mind over matter so far, and now that I’ve been faced with the reality of my bloodwork the illusion is shattered and it’s just not enough to keep the physical things away anymore..?

There are no easy answers. All I know is that I haven’t hurt like this for a while and I’m at a total loss what to do.

L

Ps. Most of this post was written the morning after, I was just too sore to even type last night.

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Well, what a day.

Arrived on the ward (just in time for lunch) and had my canula fitted, bloods and obs taken etc.  The nurses asked how I’d been since last time and I told them I had definitely noticed an improvement since starting the Orencia infusions.  I have a bit of a wait after that so settled down with my Kindle; an hour later one of the nurses came in looking quite worried and asked me if I was sure I was feeling okay, that my test results had come back and were so bad they were trying to contact my Rheumy.

They spoke to him on the phone and he said he’d pop up when he could. I was glad of the chance to talk things over with him, as I have been feeling confused and the blood test results only made me more so.  I told him how well I had felt after the first infusion and that I was noticing some improvement with my energy levels even if it hadn’t reached my joints yet, many of which are still stiff and painful.  I explained that the Methotrexate had given me some side effects, that these had lessened slightly to effect me mostly on just a few days (Friday, Saturday & Sunday) but left me feeling drained and sickly.

Today was supposed to be one of the good days – I thought I had a bit of colour – but my Rheumy said I was noticeably pale, so I told him about the bad days when I look like a zombie with purple rings round my eyes.  He told me my haemoglobin level is 8.0, so that at least explains it.  I am worried that it is the Methotrexate causing the Anaemia but my Rheumy says it’s more likely to do with the Still’s Disease being active and having lots of inflammation – Anaemia of Chronic Disease.  My GP on the other hand, thinks I have Megaloblastic Anaemia caused by low folate levels and since Mtx is a folate depleter it would make sense that it has become worse since starting it, even with taking a Folic Acid supplement.

They did check my Folate level yesterday but the result didn’t come back while I was there; Rheumy said he’d keep an eye on things and see me again at my next infusion in four weeks.  Hopefully by then things will have settled down and the methotrexate will be doing more than making me feel queasy – it takes 8-12 weeks for it to boost the mechanism of the Orencia.

I did at least get my infusion, but I was left completely befuddled by what had been discussed.  How can I feel so certain of an improvement when my bloodwork is getting progressively worse? Am I imagining that I can get out of bed in the morning, without assistance? That on most days I am showered and dressed by 10.00am instead of having to wait until my painkillers etc kick in, usually only getting myself ready after noon?  I know that I’m still in quite a bit of pain with my joints but I was happy that I at least had a bit more energy; but how can even this be when I am so anaemic?

There have been times when I’ve felt dreadful and my results haven’t been too bad, so just how reliable are they?  I guess all I can do is carry on the way I have recently, believing that I at least feel a little bit better, and hope that the results settle down and catch up with how I’m feeling. If I think about things too much, I’m just going to get more confused and disheartened with it all and I don’t want to give up on Orencia just yet.

L

Previous posts related to this one:

First Orencia / Abatacept Infusion

Second Orencia Infusion

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I know, two posts in one day must seem a bit obsessive but I was forwarded this article  and just had to comment about it, since I related to it in more than one way. Plus, it is coming up to the end of July, which has been Juvenile Arthritis awareness month in the US, so it seems a good time to look back on things.

First is the story of Brynn, who has a form of Juvenile Arthritis and talks about having to deal with the fact that she is unable to do a lot of the things she would like to – play volleyball and soccer etc – while she fights through some level of pain because she is determined to participate in other activities that she loves.  Of course I’m reminded how, as a child, I couldn’t continue my dance classes; and then, as teenager, how I had to stop all the things that I loved too – horse riding, athletics, cycling, netball, hockey… I went from being the talented, sporty one that was always on the go, to the one who could only sit on the sidelines and watch, in just a matter of months.

Coming to terms with these limitations is one of the hardest parts of living with this illness; it’s not just a one off occurrence but something you have to deal with every day.  I have never stopped wanting to do those things (and other things that crop up over time), but I have to be realistic without giving up hope that maybe one day it will be possible. In the meantime, I’ve realised how important it is to find things you enjoy and can do, even if only in small bursts.

I scroll down further and see the heading ‘Hurt to Be Touched’ embedded in the article and am drawn to it straight away.  That’s a phrase we used so often during the early days; in fact, the whole description of Ashley Matthews’ experience is identical to how my symptoms presented at 14 – the muscle weakness and tenderness, the pain that even a hug from my parents could cause, having to be carried up and down the stairs, not being able to stand or even roll myself over in bed. I remember the films and photographs that my paediatric rheumatologist took of me trying (and failing) to sit up and pull myself up off the floor…

Then I see the word Dermatomyositis  and it all makes sense because, as I have briefly touched upon in My Story, this was actually my previous diagnosis and it still resonates with me.  Like me, Ashley was first treated with a massive dose of Prednisolone and had to endure cruel taunts as a result of the effects.  I was lucky in that I had nothing but support from children at my own school, but not everyone was understanding – strangers, even adults could be insensitive. I remember my local shop keeper refusing to sell me a Mars Bar because ‘I looked like I’d had too many already’.

So I can really empathise with both girls in the article and know there are many others going through the same.  The main point I want to get to though, relfects back to the title of the article and is the statement that it finishes with – a quote from Ashley Matthews herself – which I think is extremely inspirational. On dealing with her illness, she says:

“Anything that’s thrown my way is a lesson and I learn from it.”
 
This has always been my philosophy too. It is horrible to deal with any illness as a child and to carry it with you into adulthood. I would never say it was easy to live with, quite the opposite… but we can and do learn to cope with what life throws at us and I think we are stronger for it, as both these girls and many others have shown.
 
L

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I know at times I am, and never more so than when I started to look into things more for writing the Still’s Disease section of this blog.   It seems that I’m not the only one either, as a brief exchange between tweeters proved earlier today, prompting me to write this.

The main issue seems to be a confusion around its relationship to other conditions. Questions that arose were:

  • Is Still’s disease the same as JIA?
  • If you are diagnosed with Still’s Disease as a child, does this diagnosis change to RA in adulthood?
  • Is there a difference between Still’s Disease in adults and children?

I can try and answer, but as always I am using only my own knowledge / resources and obviously, I’m not a doctor.

Still’s Disease seems to be interchangeable with the term Systemic Juvenile Idiopathic Arthritis and it’s true that it was first described in children.  However, it is not simply a juvenile form of RA, the systemic features can often be more apparent than the joint issues. I know this is often the case for me – Mainly, I have fevers that peak at various times of the day, a rash that thankfully comes and goes (I’ve posted a couple of pictures here), enlarged glands, enlarged spleen and liver, tachycardia, the dreaded sore throat and swallowing problems, episodes of Pericarditis and then the funky bloodwork. I’ve also experienced degrees of Liver and Kidney damage in the past, although thankfully it has all been reversible. 

These things usually appear first in each flare-up and then the joint issues follow alongside, often quite acutely, but not everyone is the same.  There have been times when I’ve had to be admitted into hospital purely for the systemic symptoms, without any obvious joint involvement; on the other hand, I had surgery on my right shoulder when I was otherwise well.

So if a child presents with such striking systemic symptoms alongside joint pain and swelling, they are likely to be given a diagnosis of Still’s Disease or Systemic Juvenile Idiopathic Arthritis.  If an adult were to present with these symptoms, they would receive a diagnosis of Adult-Onset Still’s Disease; this is where the term sJIA becomes redundant (Adult-Onset Systemic Juvenile Idiopathic Athritis anyone?) and why I think we should stick to the term Still’s Disease. 

Similarly, a child with Still’s Disease can grow into an adult with Still’s Disease, with the symptoms remaining the same.  Perhaps for some, the systemic symptoms subside and their diagnosis is changed to Rheumatoid Arthritis, but in my own experience the diagnosis has stuck.  My Rheumatologist also makes a distinction between Still’s Disease and Rheumatoid Arthritis and their similar, but separate, treatment. For example, Anakinra is a drug no longer prescribed for RA but has proven to be particularly successful in the treatment of Still’s Disease, and, when recently discussing the success rate of my current treatment Orencia (73% improvement for people with RA), I was reminded that this did not apply to me directly as a Still’s patient. 

Although part of the same family of disease and sharing many symptoms, the two are separate – the best way I can describe it is similar to the difference between Lupus and RA.  Unfortunately (for us at least), Still’s Disease is not widely known like Lupus and even people who recognise terms such as JIA, RA, sJRA and so forth, may not understand the distinction and/or similarities between those and Still’s Disease.  This makes it very hard to try and get information and support as someone who is newly diagnosed, and for the rest of us to try and raise a bit of awareness.

Perhaps we need to stop the interchangeable name and stick to one recognisable term to clarify things and reduce confusion?

L

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It’s about two months now since I started this blog and to be honest, I’m still trying to find my voice and post in a way that is useful to others, not just self-indulgent.  It’s taking a while to get used to talking about myself, but I guess sometimes another person’s experiences can be as informative as an article and I hope I get the balance right.

My main intention has always been to provide information for people with Still’s Disease, especially those in the UK, since there isn’t an awful lot of information/support out there and this can leave the newly diagnosed feeling isolated. Many people that I have talked with have commented that the Foundation just didn’t accommodate their needs and so my goal is to eventually get an actual UK site up and running. Of course, this is all a learning curve for techno-shy me so I have to take things one step at a time.

I did take a step in the right direction today though, when Arthritis Care added this blog to their Community index.

Thanks guys 🙂

L

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