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Posts Tagged ‘Dermatomyositis’

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Things on the gastric side were looking up. I got the results back from yesterday’s Endoscopy and they showed that I had Gastritis – significant inflammation of the Oesophageal tract (which also explains the widespread chest pain), Stomach lining and Duodenum; not nice, but better than the ulceration that I had been concerned about.  Fortunately, all the IV medications I had been taking since being admitted were helping already – a combination of  Anti-Emmetics, (which close the top of the stomach and encourage things to flow in the right direction, as well as helping with nausea), Proton Pump Inhibitors, Antacids and H2 Blockers.

I still had some pain, but was told that it would take time for this to settle down as the inflammation eased. A nutritionist advised me to alter my diet and cut out certain irritant foods for a while; mainly spice and acidic foods such as tomatoes, peppers, onions, cheese, fruits and juices – all of my favourite things basically. Instead I was to eat lots of potatoes, white meat and fish, pasta, rice and vegetables, also things I already eat a lot of so no problem there. Hopefully, these limitations won’t be forever though as I’m a big foodie and like variety! Their guidelines said a strict diet for 4 – 6 weeks, after which I can start trying myself out with things a little bit at a time to see how I go… well except for spicy food, that’s going to take a lot longer and I love my spicy food 😦

They also stopped my Naproxen and Cyclosporin as they felt that these two drugs in particular had contributed to the Gastritis. I should mention that they did liase with my Rheumatology team throughout my stay and that they felt it was more likely to be the Methotrexate that I stopped recently. But, I was under the care of Southport Hospital and respected their wishes for the time being.

Things didn’t stop here though and another problem soon arose. As time progressed, I started to notice that the dreaded temperatures and sweats were increasing, plus I was starting to develop a very visible Still’s rash all over my body. I tried to show it to the nurses and doctor, to explain the significance of it and what usually followed, but I had been admitted with gastric problems and they were their only concern. It turns out that the two were connected though and that I potentially hadn’t been absorbing my oral medication for a month or so, leading to the major flare that follows.

As today went on, I became less mobile and able. I felt the pain and stiffness sneak into my joints; first making it difficult to reach for and hold things; next I began to struggle to sit and stand without help and then even hobbling the short distance to the toilet became a huge effort. By evening I was in a pretty bad way. A nurse finally listened to me and gave me the IV morphine I’d been prescribed to cover all of my pain whilst off oral meds; I wasn’t expecting any visitors and so fell asleep for a few hours – big mistake!

I woke up from my nap with all joints a-throbbing and found it impossible to even lift my head up, never mind sit up fully. This happens to me quite often, especially if I lie flat on my back for a time – I don’t know if it is simply part of the Still’s Disease or some throwback from the Dermatomyositis (a form of muscular dystrophy) I was diagnosed with at 14, but it has always been a big issue for me.  I buzzed the nurses to explain and was told that myself and another lady were being moved to another ward shortly and that they would sort me out there. Ironically, we were going to the ‘upwardly mobile’ ward, just at a time when I felt anything but mobile.

The problem about switching wards is that you have to make the staff aware of your problems all over again. It was obvious that they weren’t expecting a patient that had to be transported on a bed and pat-slided (a word I came to dread over the next week); this was a ward you were sent to  recover and prepare to be discharged. The two female nurses were lovely to me as I explained my difficulties and promised to find me pain relief and assistance; however, it turned out that they weren’t fully responsible for my care. It would be a male nurse called Conrad that would make all the decisions.

The first decision he made was to keep me rolled onto my left side, with pillows propped along my back so that I couldn’t roll flat. This was because he’d read in my notes that I was feeling nauseous and didn’t want me to choke if I was sick while lying on my back. Yes, I can see the line of thinking here, but I was no longer vomiting or even feeling sickly. The next decision he made was that I looked ‘too young’ to need any form of pain relief stronger than Paracetamol; I heard him say so at the nurses’ desk, which was a stone’s throw from my bed. When I told him I’d been on longterm pain medication for 16 years and that I knew Paracetamol wouldn’t help, he told me that it was ‘stronger than everyone thought’ and to ‘trust me, it’ll do the trick’.

It didn’t.

An hour or so later, I was in tears with the pain but he would not budge on the matter, even though I had actually been prescribed IV morphine and Oramorph by a doctor. I remember thinking it strange that my main pain seemed to be coming from my ‘good’ hip, but then I had been lying on it for over twelve hours by this point. I had no idea then just how bad things would get.

The night went on and the pain grew worse, but I must have managed to fall asleep at some point because I woke at the start of a nightmare the next morning.

L

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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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Write about something you know, people were always telling me.  So, with ten years experience of living with Still’s Disease, what better subject to write about when jumping on the blogging bandwagon?

The only problem is where do I start?

I guess traditionally the best place to start is at the beginning and an introduction wouldn’t hurt either, so here we go.  My name is Laura, I am twenty-eight years old and live in the Northwest of England; Lancashire to be precise.  I was diagnosed with Adult Onset Still’s Disease at the age of nineteen during my first admittance to an ‘adult’ hospital, having previously been treated for a similar condition, called Dermatomyositis, at the local children’s hospital from the age of fourteen. 

Since then I have been through a lot thanks to this lovely disease, some of which I’ll share at a later date; but there have also been a lot of good times, ‘normal’ times and plain ol’boring times just like for everyone else.  I live my life as best I can – it’s the only one I’ve got – and although I do get frusrated at times, deep down I know that my experiences have become a part of me; without them I wouldn’t be the person I am today.  I hope that people who may be going through similar things, (either with Still’s or another chronic illness), will  be able to read this and see that despite the rough times, there is ‘Still life’.

L

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