I’ve been home for nearly a week now but have been so caught up in the whirlwind of travelling (and recovering) that I haven’t been able to put my mind to writing much since, but I’m back now and will get into the swing of things again.
I’ll start by saying that the trip to New York was an amazing experience, I still can’t quite believe it happened! We managed to fit quite a lot of the usual sightseeing highlights into four days, which was pretty exhausting, even for the fit and healthy amongst us! All I can say is… THANK GOD for steroids! I’m so glad that I was able to have my worst joints injected with cortisone 4-5 days before the trip and took a short increase in my prednisolone to give me a boost; I’m not sure how I’d have managed without, but with them I was able to keep up with everyone else for the most part.
We did do quite a bit of walking but mainly we travelled by the subway, which I found to be fine despite several warnings from others. I even managed to get a seat most of the time. I did take my portable stool (although it was temporarily confiscated by security at the Empire State Building!) but only used it a few times; knowing I had it if needed was reassuring though. We also tried to plan things so that a ‘walking activity’ such as a museum or shop, was followed by a seated one – like the bus tour and cruise, giving time to recuperate. Taking my painkillers regularly also helped of course – I could tell when I needed a top up as I would start to flag a bit, but soon perked up again.
My highlights of the trip have to be:
The Yankees baseball match – a sport we don’t have here and brilliant, fun atmosphere.
The Planetarium show at the Museum of Natural History – amazing!
The Harbour lights night cruise around the islands (despite getting drenched!).
Seeing Times Square on the first night, when all the lights and the hustle and bustle made a big impression.
The view from the top of the Empire State Building.
Something that I learnt whilst in New York is that people there do not seem to pee! Or if they do, I’m not sure where, because it is very difficult to find a toilet anywhere, even in eateries! This is no good for those of us on steroids, retaining water – which from our photographs I obviously was. I literally look like I have a swimming ring on beneath my clothes… BUT I’m not going to complain because it allowed me to have such a fantastic time.
I think I’ll be buzzing with excitement for a while to come yet, plus we already want to start organising our second trip to America for some time next year. However, we need to get my health stable before we do, as that will be a longer trip and no amount of steroids will cover me.
It’s been a tough week joints-wise. Joints are flaring that haven’t flared for years – my knee for example hasn’t been swollen like this since I was 19, almost ten years ago, so that just shows that things aren’t improving on the Orencia. If anything, I feel worse.
Fat Right Knee
Tomorrow I am at the hospital for my fifth infusion and will see my consultant. I’m not sure how long we have to persevere with the Orencia before we give up on it, but I’m thinking that tomorrow might start the ball rolling towards looking at some alternatives.
I’m looking forward to some short-term relief too, even if it does involve steroids in their various forms. I’m not going to let all this get in the way of enjoying my time in New York, but it would be nice not to even have to think about it.
For the past week or so, the weather here has been mainly wet, windy and much colder; around this time I noticed that my joints were more painful and increasingly stiff. I know I was already flaring but there is a longstanding belief that climate has an effect on arthritis; that cool, damp weather leads to painful joints and I’ve always wondered if there was any truth to it.
It can’t be coincidence then, that for me, the worst of my flares have always seemed to occur in the Autumn months. I used to dread September and October coming round – the start of new terms at college, university and then work were always a struggle – and now it looks like it’s happening again. Nothing has changed in my treatment schedule, yet joints are tighter and I start every morning feeling like the Tin Man from The Wizard of Oz.
I have my fifth Orencia infusion on Thursday and should be seeing my Rheumy for a short-term boost that will (hopefully) help improve things enough that I can enjoy our trip to New York without having to think too much about the Still’s. When I saw him three weeks ago, we discussed having the elbow and shoulder injected, but now I’m thinking I might need the right knee injecting. It’s not mega painful but it is puffy and tight, which restricts the movement and bendability of the joint, meaning steps are awkward (I hope the Empire State Building has a lift, because climbing those stairs one step at a time could take a while!).
However, the weather in New York should also still be quite warm at this time of year, somewhere in the 20s at least. So maybe that will help a little bit too? Keep your fingers crossed that the storms stay away and the sun comes out for us!
The past couple of days have been quite bad Still’s-wise; today is slightly better but I think that’s down to me switching back to my regular Tramadol rather than the Prolonged Release form I had been trying out. That didn’t seem to keep the pain away enough at all.
Since waking up on Wednesday, there has been a lot of joint involvement – my left arm joints suddenly felt a lot worse, with the elbow even more restricted than usual, both knees felt painful, tight and stiff as if there was fluid in the joint (there may be, just not as severe as when I was a teenager and they swelled up like footballs), plus my right hip is extremely wince-worthy painful, meaning I can’t lift that leg on its own and have to take stairs etc. one step at a time.
It really isn’t looking promising for the Orencia / Methotrexate combination. I’ve now had two doses of the 15mg Mtx and that is the only thing to have changed – funny then, that I feel worse. Still extremely tired and so I’m giving myself rests in the afternoon and going to bed earlier again; I figured that my body was working over time to heal this open wound after all, so I will listen to it. Hopefully, after my infusion and Rheumy visit on Thursday (expecting to need some joint injections), I’ll have much more energy for New York. Besides, I’m so excited that I’m sure I will run on adrenaline alone.
I’m no longer too concerned about my wound and travelling. The nurse was very pleased with the progress it had made and reduced my clinic appointments to twice a week. The rest of the time I am to change the dressings myself and she has given me everything I need to do so. I’m getting used to it now and can even remove and replace the packing myself, it’s not too bad now I know what I’m facing. Plus the wound itself has improved so much that it is no longer the bottomless pit that it seemed at first; it’s amazing how the body works to heal itself.
I’m surprised that it hasn’t ever really been painful – of all the things that are going on with me at the moment, that is the least of my pains. The Hidradenitis itself is more painful, especially this second site in my left groin. It is nothing to look at really, just two pin-prick sized holes where it has channelled to the surface, but I nearly jumped through the roof when they swabbed it the other day, whereas I haven’t flinched at all with them poking and prodding the open wound. Obviously I’d love for it to clear up itself, but at the moment I’m okay with the possibility of needing the surgery again, but I would like to get an idea of the scarring first.
Anyway, that’s everything for now. There isn’t much I can do until I see my Rheumy really, except maybe ask the GP about some different painkillers again. Looks like I’m back to waiting around for things to improve; it just can’t happen fast enough.
I thought I’d post this article, as it sounds like promising research to me. Scientists claim to have found a protein that stops immune cells from going on a ‘rampage’ and destroying healthy joint & cartilage tissue. Apparently, it is a lack of this protein that may cause the symptoms of Rheumatoid Arthritis.
When the scientist injected a form of this protein into an animal with RA presentation, its symptoms disappeared, so it looks like another type of treatment could be on the way in years to come.
Who knows, maybe one day they will finally find a universal treatment that helps every single case, rather than relying on the trial and error method of gaining control over the disease.
Edit: A similar article on the same subject can be found here.
My line manager phoned me earlier. She said that it had been overlooked that the headteacher had requested an appointment with me for tomorrow – for my Stage 2 Capability hearing. Since I hadn’t been informed, I wasn’t prepared; plus the HR representative said that I would need another assessment by occupational health beforehand, (just to make sure I’m not pulling a fast one). The end result being that there is no meeting tomorrow but it is in the pipeline.
She also asked how I was doing and so I told her that things still aren’t great and that the new medication hasn’t been effective as yet. I’ve no idea what she makes of it all, but I feel so frustrated to be saying the same things over and over to them, guilty almost, as if I should be giving them better news. It must be difficult for them to get their heads around an illness that the doctors can’t immediately treat successfully, to understand that it is a process of trial and error that can take a huge amount of time.
Sometimes, I wish I could tell them how frustrating it is for me to have to go through it, that I’m not just sat at home enjoying the break, but am in pain every day and so very limited in the things that I can do. I know there will be people questioning it; in over six months, nobody other than my line manager and the headteacher has been in touch; my supposed work ‘mates’ have all but forgotten me, annoyed at the fact that I haven’t returned sooner.
At the last hearing, things had seemed promising and I was looking forward to starting the Orencia with the hope of returning to work in mid-September / October. All those weeks have past and still no improvement; instead, it’s likely that I’m facing another wait to decide on a new approach, apply for treatment funding, and further uncertainty surrounding the effectiveness of whatever approach we choose.
I didn’t ask for any of this, nor can I change it. I approached Orencia with an open mind, feeling positive; I have followed every instruction from my consultant, even those that I wasn’t keen on. Yet I feel I am in the wrong, that I am being judged negatively – these are disciplinary hearings after all.
I’m almost hoping that they do give up on me and end my contract, just so that I don’t have this niggling guilt in the back of my mind. I know that I’ll bounce back and find something else once we do get it right.
Of all the mornings to wake up with the joints flaring, it had to be today, when I had an appointment to see the surgeon for my post-op follow up. It was such a struggle to get out of bed and ready but I told myself that it would be a quick appointment and that I’d be home resting before long.
Sod’s Law says that I had to be wrong. We sat in the hospital waiting room for almost an hour and a half, with me so uncomfortable that I couldn’t sit still but struggled to move at the same time. It took all my effort to stay and not go home; the only reason I did was because I knew that my wound needed redressing and I was hoping to get some feedback.
Again, I was wrong. When I was called in to see the doctor, the nurse said – ‘so you’ve had a little bit of skin removed have you?’ I was a bit confused, since it was more than a ‘bit of skin’ that I’d had removed, but I didn’t want to make too much of it in case they thought I was dramatic. Then the surgeon (not the one that did the actual surgery mind..) asked to see the wound; I made my way over to the bed but he stopped me and signalled for me to just er drop them and show him from where I was sitting.
I tried to explain it had a dressing over the top and he seemed surprised; ‘why are you still using dressings? It should be fine without dressings now’ he said, as the nurse removed them for me, revealing my blood-soaked, packed wound. Needless to say, I was a lot confused!
‘Oh’ he says. ‘That wasn’t what I was expecting’.
Turns out that whatever was written up in my notes, doesn’t quite do justice to my lovely wound and that there was nothing he could tell me for the time being, since it would take a few more weeks to heal properly. Talk about lack of communication! The whole thing would have been a waste of time if I hadn’t had the second Hidradenitis site to show him, which formed the week prior to my surgery. He took a swab because there was some crepitus (crackling), suggesting an anaerobic infection, and told me that I would probably need the same surgery on that side too. Wonderful.
I have another appointment for a ‘proper’ post-op assessment in six weeks time.
One good thing did come of it though – I was given permission to shower again, woo hoo. I can finally throw the flannels away and have a nice long, hot soak, which I missed greatly!
My name is Laura and I was diagnosed with Still's Disease at the age of 19, with previous diagnoses of Dermatomyositis at 14 and Post-Viral Reactive Arthritis at the age of 3. Life is a bit of a rollercoaster to say the least, but I'm happy to say that I have had my fair share of highs with the lows. I have currently been off work for over 18 months due to a severe flareup and was getting bored, so I thought that I would try and put my mind to something constructive.
I have tried numerous drugs to treat my Still's over the years, including:
Unfortunately, having one autoimmune disease can lead to other health problems and I have also developed Hidradenitis Suppurativa, Gastritis, Anaemia of Chronic Disease, MVP, PCOS and Migraine, which I post about from time to time.
Happy reading :)
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Food For Thought
Toughness is in the soul and spirit, not in muscles.
The block of granite which was an obstacle in the pathway of the weak, became a stepping-stone in the pathway of the strong
~ Thomas Carlyle
Strength does not come from physical capacity. It comes from an indomitable will.
~ Mahatma Gandhi
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'