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Posts Tagged ‘AS’

And, here we are again – I’m desperately needing to get my knee drained.

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As you can see, my left knee is a tad “bigger” than the right one. Been like that since Friday morning, when I stumbled out of bed, quickly realizing I couldn’t walk.

I’ve been here just over three hours now, and I finally talked to a doctor… But at least today I have company!:

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I hope they’ll see to my knee real soon, because I want to make it home and make waffles as soon as possible! (It’s the waffle day in Sweden today 🙂 ).

Update: We’ve now been home from the hospital for seven hours, and I’m so much better. It still hurts to walk, and I’m still very swollen (not to mention tired), but I’m better! They drained the knee of 70 mls of joint fluid. That might not sound like much, but trust me – it is. A was by my side through the whole procedure, very brave of him 😉 I also lucked out in a different way – the doctor that assisted the doctor draining my knee is the very one who’ll be performing arthroscopy on my knee sometime in the next couple of months. I’m so glad he got to see me at my worst, so he clearly understands why I need the surgery. I still feel that the weekend in a way was sort of lost due to my not being able to walk, and I sure could use another day at home, resting. Oh well – it’s “just” five more days till the next weekend, eh?!

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Emptied

I’m in the waiting room at my rheumy’s office. It’s been, what, 3-4 weeks since I was last here.

Last weekend, 10 days ago, it turned a bit cold, and perhaps that was why my knee started swelling and aching, not sure.

I phoned to make an appointment last Monday, but found out she was away all of that week. So I called again yesterday morning, and got the appointment tonight. Sunday was bad, but today I can barely walk.

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I don’t know how visible it is in the pic, but my left knee is swollen and I can neither bend it nor straighten it out. It’s “locked” in position.

It brings me down, makes me tired and moody. I seriously don’t know how much longer I can keep doing this. Something’s got to change 😦

My appt was 30 mins ago, and the people who’ve gone in before me have had problems with fingers and toes, but I CAN’T FUCKING WALK, OK?!

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Three weeks ago I was packing for Finland.
Two weeks ago I was packing for Gran Canaria where I’ve now spent 14 days.
It’s crazy – it’s been so fast, and yet I long for A like I don’t know what. Except for the 2,5 days between my trips I haven’t seen him in three weeks. And that’s simply too long to be separated from the one you love. I’m gonna try my hardest not to let it happen again!

I was back in the pool water jogging first thing today, followed by Qi Gong, and after that we had a session of theory around AS before relax and lunch.

This morning I received a text message from mom stating: “Lunch is cancelled”. Hehe, fair enough! I luckily had a beautiful avocado, some tomatoes and yoghurt at home. A healthy lunch in other words.

A yummy and healthy lunch!

The afternoon was the usual with the one change that I was – cold. Yep, I’ve been here long enough to feel cold in 25 C degrees. Ridiculous really. Add to that the few sprinkles of rain we felt as we walked over to restaurant Adio Mare in San Agustin shopping centre (ha!), and something’s radically changed weather wise.

I removed the tape this afternoon as my knee is really swollen, and my physiotherapist (who I really like, if I haven’t mentioned that earlier) wanted to see what it looked like without it. It was a bitch getting it off – especially the bit at the back of the knee. It hurt peeling that off 😦 However, the tan lines are very apparent know. Very. Just see for yourselves!

My very obvious tan lines, and equally obviously swollen knee.

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This morning at 8:30 am we set off for our morning walk down to, and along, the beach. The pace was a bit too slow for my liking, but it seems one can go off on one’s own, so maybe that’s what I’ll do.

Once we came back we had maybe 20 mins of “down time” to read a book, lie in the sun or whatever, before the next session – one hour of workout on the lawn. We had ten different stations with different exercises that we did twice each. It was good, and I was sweating like crazy after. Then a 30 mins coffee break before we had an introduction to water jogging. The physiotherapist told me yesterday that “water jogging will be your friend”, so I was keen to learn how it’s done. You get this thick and wide belt that you put on real tight, and it keeps you upright when in the water. And then you literally just jog or walk. It feels ridiculous, but also real good! I reckon I’ll be doing a bit of that quite frequently.

After 45 mins of being in the swimming pool it was time for relaxation – we all lie down on the floor and an instructor helps us reach a state of total relaxation (I’ve been very close to falling asleep both times) – awesome. Then we had 15 mins with a [psykolog] shrink (?) who wanted us to reflect on our stay so far. It was made apparent that there are two groups: the 15 that came from Gothenburg the day before me, and the five of us. A bit lame. Mr. Shrink told them they have to “let us in”, and some are very welcoming, and others maybe a bit less. I went to watch the footy game with them tonight though, and that was nice.

After lunch we had another session on the lawn – this time in scorching sun – with one of them yoga balls and a stick each. Sounds odd, I’m sure, but most people with AS have back issues and need to work their mobility in back, neck and shoulders. We only lasted 30 mins in the sun, so another 30 mins of “downtime” before we dove back into the pool – this time for 45 mins of water gymnastics. All in all a really good first “real” day! I’m gonna be sore tomorrow though…

View of the beach in San Agustin, looking towards Playa del Ingles and Mas Palomas

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After spending an introductory day at Svenska Re, the Swedish rehab centre I’m at, I must say that I’m impressed. The facilities are great, the staff too, and the program is very much up to each individual. My first impression of my “peers” is: they all look so healthy! And that’s probably one of the worst things about AS – you can’t really see that someone has it and is suffering from it.

The first person I met was my physiotherapist who told me to chill out and just relax. “It’s important to just relax too, you know” she said matter-of-factly. She might as well have been speaking in Greek. In my books one has to earn the right to relax! The actual exercise I got in today was 600 m swimming, 10 different “stations” in the gym, and water gymnastics. Fun J Tomorrow will be my first “real” day of exercise, starting at 8:30 am with a beach power walk. I hope I get to continue with that, even though the physiotherapist said it might be too strenuous for my knee.

Today it hasn’t been too hot, not as bad as yesterday, and there’s a lovely breeze too. I’m soon to head down to the town of San Agustin with three other participants in the program. Should be good!

Looking up towards the bungalows in Rocas Rojas from Svenska Re

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I’m sure by now, no one’s missed out on the fact that I have arthritis. I suffer from AS, previously known as Bectherew’s. With this type of arthritis comes the added prevalence and risk of iritis, an inflammation of the iris (in the eye). This is a most painful condition, and one which I presently suffer from. This is the third time I have it, I had it twice in the end of 2004 and beginning of 2005, when I lived in London. And this is why I can compare the healthcare in Sweden and England, or Stockholm and London to be precise, for this very condition. What’s the service like? How much does it cost? What’s the waiting time like? How are the doctors? Stay tuned and find out…

 

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On December 21st, 2004, I wrote in my diary: “My left eye hurts, and it’s really red”. The following day, my notes say: “Got quite a bit done at work, but my eye kept getting worse, so I eventually went to see an optometrist who immediately said I had iritis and told me to go straight to the Western Eye Hospital. After waiting only a brief moment, the doctor there confirmed the diagnosis, and gave me steroid drops. He also noticed that I had a couple of holes on my retina that he fixed with laser. Bloody scary”.

After that I have no notes on the eye until January 24th, 2005, when I wrote: “My eye sight has become blurred again. I think I might have to go back to the eye hospital tomorrow”. And the following day: “Sweet, so we’re back on square one again. I saw nothing this morning. Cancelled my meetings and went straight to the eye hospital. The inflammation is back, but now much worse. Got an injection in the eye ball, a much stricter drop regime, and twice as strong drops”.

Ok, I immediately admit that I’d completely repressed the memory of that injection – sweet Jesus, that sounds horrible! I shudder at the thought of it…

I had to get a new prescription for drops on Jan 31st, 2005, as I’d run out, and on the 3rd of Feb I was back at the Western Eye Hospital for a check up during which I was told that it looked much better, and that I should give one of the drops up, and jump 10 days forward in the drop regime. And that’s the last note I have on my first bout of irits.

Back home with a diluted pupil after my first hospital visit. Still somewhat cheerful.

Pretty stylish eye-patch, eh?!

This time around I wrote on Jan 30th that my left eye (same as in 2004-5) hurt, and on the 31st that it kept getting worse, so I headed to the emergency room at St Erik’s Eye Hospital. Where I waited for quite some time before I was first shown to a nurse who checked my sight, measured the pressure of the eye, etc. After waiting some more I got to see a doctor who told me he couldn’t confirm that it was iritis, it might just be a virus in which case nothing could be done about it. So, after a total of three hours at the emergeny room I was sent home with the information that it was either a virus, in which case nothing could be done, or possibly the start of iritis in which case it’d get a lot more painful, and if so I could come back then. Gee, thanks.

I have a high threshold for pain, one must when dealing with arthritis, and so being told that I was wrong, that I didn’t have iritis was just about the same as him telling me I was a malingerer, and that’s a terrible insult. So, I strode on, with increasing pain, for another week. Stupid, I know. But I was away with work, cross country skiing over the weekend, so I couldn’t go to the hospital, now could I? Instead I made an eye-patch out of bandaid and covered the bright red eye, and worked hard at keeping my balance, only seeing on one eye.

But yesterday morning I was back at the emergency room – after a night of waking up several times from an eye hurting that bad – a mere three minutes after opening. I told them I’d been there one week ago, and that it’d gotten a lot worse since. Luckily this meant that I got to skip the step with the nurse, and got to meet with a doctor straight away. She immediately said “You have a substantial iritis”, and what’s worse, she also said “unfortunately the iris has grown into/onto the lense”. Well, isn’t that swell? Because it’d been left untreated for a week, it had now gotten a lot worse, and more serious. The iris and pupil attaching itself to the eye’s lense is not good, as it restricts the movement of the pupil.

The doctor said that the “problem” was that we who have had iritis before recognize the symptoms and know that we should seek help immediately, only that we do it so quick that the doctors can’t actually see the iritis yet. Catch 22, no? She gave me a concoction of drops that would hopefully “blow” the pupil free from the iris, and had me sit down and wait for an hour. Unfortunately it didn’t help. Perhaps my crying from anger, helplessness and despair didn’t help, I don’t know. I just felt (and still feel) that life’s a bit unfair. I’ve had a shit start to the year, healthwise, that’s for sure.

Yesterday I did not just look unhappy when I came home, but plain evil too, no?

Before leaving the hospital I had six Interns/students come look at my eye since it was such a beautiful case of iritis and a pupil grown onto the lense, nice. They actually were quite nice though, they laughed at my jokes (why do I always crack jokes when I’m at the doctor’s? Defense mechanism?), patted me on the shoulder and said thank you when they left. I also got an incredibly sticky creme put into my eye; Atropin-kokain. Yes, that second word is cocaine. As close to proper cocaine as I’ll ever come, that’s for sure. I picked up some cortisone drops and a proper eye-patch on my way home, and here I am. Banning the first doctor I saw, with blurred vision and having trouble remembering to take the drops every hour.

So, how do the two healthcare systems compare then? Well, to begin with – I was given help immediately in London, and they threw in some extra laser treatment while I was there, and at what charge? Zero. None. It was free. And the prescriptions cost £6.80, regardless of what they were for. Here at home I was told there was nothing wrong with my eye, after three hours, which led to a more serious condition. And each visit cost 320 SEK, and the prescriptions 45 SEK x 2 + 65 SEK. Soooo…I remain way impressed with the NHS and disappointed with the Swedish healthcare system that’s supposed to be so good. Well, it’s not, and we pay far too much for what we get. High taxes and high fees? What’s up with that?

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Of Humira, that is. After almost 3,5 years of taking Humira shots every fortnight, I’m about to shift over to Enbrel. It’s exciting, yet frightening. My reason for changing my meds is that which I described in “This is a happy day” – I could conceive while on Enbrel, but not on Humira. And even though I don’t have any plans on doing that anytime soon, I want to know that the option is there, once the time comes.

Enbrel vs. Humira - syringes vs. click-pens...

However, there are no guarantees that Enbrel will work as well for me as Humira has done, and somehow I totally forgot about that aspect. It didn’t occur to me that they’d have different effects. They are both so called biologics, i.e. genetically engineered proteins derived from human genes. Ha! And to think I’m against GMOs…

They both work by blocking a chemical activator of inflammation called tumor necrosis factor; so called TNF-alfa blockers. And they’re expensive as heck. I just picked up four Enbrel shots, and they were SEK 11 000. That’s 1 500 USD, 1 600 AUD/CAD, 2 100 NZD, or 1 200 EUR. Crazy. Again I thank the lord for living in Sweden and our system of protection against too high costs. Mind you, we have a new health care plan at work, so I’d have my costs covered anyway, but still – geez. That was medicine for one month!

Drawback 1: I’m back to dealing with syringes again 😦 The Humira came in a “click-pen”, but these puppies are syringes. Boo. Hopefully next month I’ll get Enbrel click-pens instead. It’s not that it’s difficult to take the shot, but it’s hard to force oneself to continue the injection when it really hurts. That’s where the click-pens come in handy. You just maintain pressure – there’s no precision action needed.

Drawback 2: Enbrel shots are taken every week. That means bringing one shot for each week when travelling, and they have to be kept cold – they should be stored in a refrigerator. Hm. Will be a bit tricky on my five week trip over the holidays when the first stop is Bali…

I sure hope Enbrel works, because Humira has worked wonders for me these last few years. However, my knee’s troubling me – again. It’s been slowly swelling the last 10 days or so, and I realize it’s going to need emptying; it ain’t gonna go back to normal on its own. Unfortunately I couldn’t get an appointment to have it done until Sept 8th, so that’s another 10 days of semi-limping and no jogging. Not good. Even biking’s difficult – I have no strength in the left leg with which to push the pedal, I feel ridiculous. Oh well – that won’t bring this trooper down! The thought of Bali keeps me going 😉

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I’ve just been to see my doctor, and I’m so happy! My doctor’s great, she’s easy to talk to, and she really listens. Today was my “3 year check-up” after starting treatment with Humira for my AS. Before I started with that treatment though, we had tried adding Methotrexate – a form of cytotoxin – to my treatment with Salazopyrin, but it had little to no effect. So in April 2007, crazily enough already three years ago, I started giving myself shots in my stomach every fortnight, along with taking the cytotoxins weekly. Well – there’ll be no more of that! The cytotoxins that is. And this makes me deliriously happy! It’s such a relief, you have no idea…

This was me being crazy happy in 2003 - and the very way I feel today!

What difference it makes? Well, for one, I’m no longer killing any of my own cells. Also, I’m now allowed to drink alcohol like a normal person, i.e. no two glass limit like I’ve had in the years past. I mean, this has by no means been a big issue, but now I don’t even have to think and count and plan for it. And, of course, the real kicker is that once the cytotoxins are out of my system completely – in 3-5 months – I can consider pregnancy. And this has me in tears. Happy tears.

For someone who’s biggest dream in life is to become a mother, being on medication that forbids you to take that step is disheartening, to say the least. Don’t get me wrong, I’m not in a panic to have kids (yet), but knowing that it’ll now be “easier” once it’s time sure feels great. There’s not enough research on what Humira does to a foetus, so the recommendation is to stop taking shots some five months prior to conceiving, however the alternative shot one can take, Enbrel, is apparently better. According to my Doc, I’d be able to take Enbrel up until conception, and then stop. So, as you can understand, I’m very happy with this change in medication – it feels like victory (and I’m having bubbles tonight to celebrate it!)!

Besides that, we decided my tonsils are staying (doh!), at least for now, and my left knee was once again emptied (52 ml this time) and given a cortisone shot. Feels better already! I’m happy, happy, happy!

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Yeah, so you all know I have arthritis, right? I have a form called AS (Bechterew’s), and though it’s “supposed” to give me problems in my lower back, I’ve mainly had problems with my knees over the years. For this I medicate with Humira and Methotrexate, and take Naproxen for pain relief whenever necessary. Which, luckily, is extremely rare these days.

However, the wonderful tonsillitis I so cherished and enjoyed ten days ago (and which decided to make a comeback on Sunday night – yay!), is apparently just the type to set off the bacteria (was that what she said!?) that then causes inflammations in joints. So wow – a double whammy! Oh well, it’s not like I haven’t been through it before. Countless times. “Been through what?” I hear you ask. Having the knee drained and given a cortisone shot. The pics of it aren’t for the faint-hearted…you have been warned.

Before - very swollen and hard to bend, after - great relief after draining 30 ml!

So, starting sometime last week I could sense my knee swelling, a feeling I know all too well. Sometimes it goes away by itself, but by Sunday night I knew I’d have to call my Doctor and get some help with relieving the pressure. I was lucky enough to get an appointment today, and was there right after lunch.  We (ok, I didn’t do much) drained it of 30 ml of “joint fluid” which, as you can tell, was a bit yellow and gooey. I’ve had more than 100 ml emptied in one go before and then it was much more clear and runny. Apparently it looks like it did today when it’s in the beginning of an inflammation. I’ve also had pea green fluid drained from my knee, but that’s a whole other story…

But yeah, so one shot goes in to first numb the knee a bit, then we drain it, and then we inject cortisone. My doctor, Anna, is brilliant, but it was the first time she’d ever had anyone take pictures of the procedure, so she laughed and admitted that she was a bit nervous! Now the doctor’s orders are to rest and not let the band-aid get wet for 24 hrs. Luckily for me there’s Champions League football on tonight, so couch – here I come!

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In pain!

In pain!

Does anyone have any ideas of how to accomplish this? Seems a bit like mission impossible to me 😦 Just had a shot in my left wrist and was told by the doctor not to use it for  24 hrs…hm. I’m at the office (typing), then I have to use a monkey wrench to adjust my bike saddle (using only one hand?) before biking home (holding on for dear life with only the right hand? I think not) where I have painting to do – using only my right hand. This sucks! I mean, it dooesn’t suck as bad as it would if the left hand developed the same inability as my right hand already struggles with, but it still sucks. Arthritis sucks. Becterew’s/AS sucks. 😦 Can’t help but wonder if it has something to do with our lowering my dose of the Methotrexate as I wrote about?

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