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Posts Tagged ‘arthritis’

Today I was told my arthritis would probably get better if I just believed in God.

Supposedly it’s just “ein prüfung”, en prövning, a test, according to the, of course, German who said this. COME ON!

I’ve thought he’s a bit of a sleeze for years, and now I’ll add idiot to that.

So, genes have nothing to do with it, huh? Likely. His reasoning was that he had a friend/colleague who was “freed” from his alcoholism when he found God. As if alcoholism and arthritis were comparable! GAAH!

And if it’s only a “test”, a test of what exactly? And how many tests/prüfungs do I need? Severe arthritis and unability to bear children isn’t enough?

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Not gunshots, but the medical kind. Filled with cortisone. Today I had three of them.  

Two shots in my hand…

 

Two in my hand, and one in my left hip, where the tendons are attached. 

Now I hurt, and I have no pain killers in the house. I ate them all. I do have morphine, but don’t know if I dare take it…

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56. The pain!

I’m in pain. My whole body hurts. I must see a doctor tomorrow.

It’s so bad I actually texted my doctor on her private number today. First time ever. She’s agreed to see me during her lunch break tomorrow. She’s awesome.

Because my hand hurts so much I’m using the Dictaphone again, but I’m going to stop now. I’m tired. Wô lèi.

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Today my hand has hurt like hell and it’s even worse tonight. It’s so bad I can’t write on my computer. “Well you wrote this”, I hear you say. But actually, I didn’t.

This blog post was done by Dictaphone. Before this I’d actually never tried it, but it’s such a smart function on my phone!

What’s even better, is that you can change the language that it listens to and records. This means that I can record things in both English and Swedish. Canadian English, no less! I think I’m done taking notes by hand! 😉

My hand hurts because of my arthritis, what else? There’s an inflammation in my ligaments or tendons or whatever. Nothing new under the sun there. It still hurts though. 

How was your weekend?

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Check out the front page of the magazine from the Swedish Rheumatism Association that I got in the mail today: In capitals it says “Tired of being tired”. So there! I’m not alone 🙂 

It says the degree of inflammation doesn’t affect how tired you feel, which surprised me. It could however be (an obvious) symptom of fatigue, or hypothyroidism. 

But I reckon maybe I’m just tired. No?

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So, Monday May 25th wasn’t a good day. I was diagnosed with vasculitis, and immediately hospitalised. In a state of shock, as I’ve never had to stay in hospital before. I absolutely freaked out. Had no idea of what vasculitis was or what it’d, or could, do to me. On day three I worked up the courage to ask the doctor if it could kill me, which she said it wouldn’t. Phew.

Vasculitis or chicken pox?

Vasculitis or chicken pox?

I was in hospital for three days, and then sent home on sick leave the rest of the week. The vasculitis was looking better. On the Saturday, six days later, I took my weekly shot of Humira. I shouldn’t have 😦 It said BOOM, and I had a much worse case of vasculitis from then on. I couldn’t wear shoes for six weeks because of external bleedings on my feet, heels and lower legs. It hurt like hell. It was the worst thing I’ve ever experienced.

It turned out I’d developed an allergy to Humira. After 8 years. Fascinating. So what I had was an allergic vasculitis, which I’ve come to understand is one of the “better” forms to get. Lucky me.

Naturally, that was the last shot of Humira in my life, and I couldn’t start any new medication until the vasculitis was entirely gone. This, it would turn out, would not be anytime soon.

Owie.

Owie. I couldn’t wear shoes for 6 wks.

And in turn, this meant that my arthritis, which I’ve medicated for the last 20 years, was now for the first time going untreated. And apparently it responded by hollering “field trip!” and going nuts. It’s been rough. My knees have needed to be drained/tapped almost every 2-3 weeks, on average!, sometimes even more often. I’ve had 100 ml tapped on several occasions.

I’ve had my knees tapped by seven doctors, in two different countries and at three different clinics since June.

And after tapping the knee of joint fluids comes the cortisone injection. Or injections, I should say, beacause on several occasions I’ve had to have both knees tapped at the same time. There’s been a lot of cortisone. Both as injections and pills. I love one and hate one.

I’ve been on Prednisolone, cortisone pills, somewhere between 10 and 30 mg up until last week when I finally came back down to 5 mg. I’ve gained 10 kgs (20 lbs) since early June, and don’t recognize myself in the mirror. I hate it.

On August 10th my ordinary doc deemed the vasculitis finally gone, and I started treatment with Enbrel. It lasted all of three weeks before the vasculitis was back. Dammit.

So, back off meds, and upitty-up with the cortisone level. Again. Six weeks later I started taking Roactemra. We had to try something. It’s estimated to take 2-3 months for it to “kick in” and work its magic, and I’m only six weeks into it yet, so still waiting to see. And hoping of course.

Things din’t go so smoothly though, I was hospitalised again in early October when I realized, and admitted to myself, that I couldn’t manage on my own at home. When hubby was at work I couldn’t, for example, get up from the loo on my own. That’s defeat, let me tell you. The knees just didn’t work. I couldn’t bend them, and I couldn’t stretch them out. They were “locked” in a position that made me unable to walk, sleep or do anything. Like getting up from the loo. I took a lot of morphine to cope.

The doc I had at the hospital the second time around was great, though stern. He also put me back on cytotoxins that I haven’t taken for five years, as we’ve been trying to get pregnant. But now that hope is permanently gone. 😦 Boo. Still waiting for them to kick in too.

So, here’s hoping for a great Christmas, winter and 2016! It could only get better, health wise, and 2016 is really going to OUR year!

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On Monday I spent the day at the hospital. I had an appointment for arthroscopic surgery of my knee, a “minimally invasive surgical procedure in which an examination and sometimes treatment of damage of the interior of a joint is performed using an arthroscope, a type of endoscope that is inserted into the joint through a small incision” (thank you Wikipedia). Mine was the treatment kind. You may remember I met the Doc who was performing it at the ER in March.

The morning “after” – before taking off the bandage. The Doc’s notes are still on my leg.

I arrived at the hospital at 7:10 am, and already by 8 am I was brought upstairs in my hospital bed to be prepped for surgery. I was definitely not expecting to be put under a general anaesthetic, I wasn’t last time – in 1995, but this time I was. It scared me a little, but it wasn’t like I had any choice in the matter, or even time to react. I realize I’m a bit paranoid, but the fact remains that there’s always a slight chance you might never wake up again. Seriously! However, I did. Some two hours later. Or at least so I think, because I was so groggy and out of it when I came out of the surgery and was “woken up”. I was also in a lot of pain, so they gave me a new shot which knocked me out a bit again.

I’m a bit of a control freak and did not like being so completely dependent on everyone, so totally helpless. I was thirsty and desperately longing for my chapstick, but had no way of really communicating it. After another couple of hours I was back down at the ward (?) where I started to recover and stayed for 3,5 hrs. My chapstick was waiting for me 😉 and I was also given some breakfast – only to realize I was totally nauseous…

The swelling is pretty obvious.

At 4 pm the Doc finally was out of other surgeries and could come talk to me about the procedure. It turned out he’d found more pannus tissue/ pannusvävnad than he’d expected, and thus had plenty “to do” inside my knee. Pannus is a medical term for an abnormal layer of fibrovascular tissue or granulation tissue. In people suffering from rheumatoid arthritis (which I’m actually not, but apparently close enough), pannus tissue eventually forms in the joint affected by the disease, causing loss of bone and cartilage. So what he did was scrape this tissue off of all the surfaces inside my joint. We’re reckoning that it’s this tissue that’s made my knee react so rapidly to any inflammation in the last few years, and now I’m just hoping that with the removal of it, my knee will “calm down”.

I’m not allowed to remove the bandaids covering the cuts into my knee for five days. Sadly, as the left one is totally hard from crusted blood. Gross!

Before leaving the hospital I was given four exercises that I am to do three times a day. I was also told I’m allowed to use crutches if necessary, and that I’m allowed to put pressure on the knee until I reach my pain threshold. I’m not to surpass it though.

Fingers crossed I get better from this please! We won’t know for sure for about three months…

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