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Blah and wah and aarrgghh

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I am having the blah. I have PMS that has pretty much turned me into shouty, cryie grumpgrump. That’s my new official name. Also, really shit non-bloggable stuff that makes me teary and grumpy in turns. Or maybe that’s the PMS. Either way, there’s a fair bit of crying and grumpyness. Also shouting. Pretty much just at Beefy and the odd inanimate object or two. So, just to wrap up, so that we’re clear. I’m in a shit mood and I keep crying and I feel sad. And the world sucks.

I’ve just today gotten around to putting the WP app on the iPad I’ve stolen from Beefy (was a gift from his Dad). He’s surprisingly pleased to have me claim it. I have always used it but if I’m going to use it for blogging and things I don’t really want the whole family taking it to play with all the time. Gecko would probably make some interesting blog posts, she might even improve the quality but it’s more the thought of them inadvertantly showing other people my private internet world that makes me squeamish.

Not having to press so hard on the keys to type makes a big difference to my being able to blog when I am not so good. Although, it is not correcting funny spelling or even underlining it in a wobbly red line so that should make for interesting reading as I don’t always hit the key I mean to. I rely on spellcheck, people! Heavily.

As I mentioned in the last post, it looks like that Rheumatoid bastard that rules my life is rearing it’s swollen feverish head anew. I am going to wait a while to call Rheum, I’m not supposed to see her until December. We’d hoped that I would be doing well for at least the next few months but my body, it has other ideas. Fingers and toes are almost constantly stiff and sore now. Just what I wanted.

I put my pelvis out yesterday. You know, the pelvis that the specialist said was totally healthy and not unstable at all. It seems that small changes in hormones just tip my already hyperemobile joints over the edge. My rheum commented that maybe I have endometriosis when I made that observation to her. She doesn’t know how close she came to getting punched in the face. If one more doctor suggests that I might be confusing intense spasmy musculo-skeletal pain that centres around my saco-iliac joints with gynaecological pain, I will stab them. I am intimately familiar with both and there is no mistaking one for the other. Are we clear? Good. I have given myself a day to regroup, I couldn’t face the GP today. Tomorrow I will go to address the fact that:
-The latest reduction in pain meds has left me in too much pain
-My boob is still really fucking sore
-I forgot to tell Rheum and GP that I ran out of NSAIDS and I need them
-We still haven’t gotten to the bottom of the fact that my back/pelvis hurts all the time, which is the original problem that started me seeing doctors in the first place (after it had already been going on for more than 3 years).

Beefy and I have discussed it. The rheum is content to hear stories of me semi-dislocating joints in the course of normal activity and tell me that It’s because my muscles have gotten lax from all my rest. I think she and annoying physio have been chatting in secret about ways to piss me off.
She and at least four other doctors have said things lke “Wow, you’re really hypermobile, aren’t you?” yet she thinks that it shouldn’t be causing me problems apart from faster joint erosion leading to osteoarthritis. Beefy tried to broach the subject with Rheum on last visit but she misunderstood and said “Oh, don’t worry, joint popping isn’t a problem, it’s nothing”. We gave up trying to explain that my joints pop OUT and cause me a lot of pain. GP knows and has encouraged me to discuss it with Rheum but after several aborted attempts (Usually because I don’t want to make a fuss. Go me, being all assertive and shit!) I really want to talk to GP about another way of addressing it. Ignoring it won’t make it go away. It irks me so much to be the problem patient who always has something wrong with them but here we are.

After all of these tests and doctors and medications, I am still in pain all the time. As we’ve reduced the good painkillers it’s become apparent that they’ve been masking a lot. I’m supposed to be but a step or two from not taking them at all. I can’t bring myself to do that. I won’t subject myself to more months of pain with no relief just because that’s what they would like. They’re happy to discuss the fact that the RA meds will not stamp out the disease but merely lessen it’s activity, they’re happy to discuss the fact that my pelvis/back is causing me a lot of pain but nobody’s happy to take charge of prescribing pain relief on an ongoing basis. I am booking in to see the private pain guy, an appointment which took months and months to get but I cancelled because I got the PMU appointment (smart moves, I am full of them). Someone’s going to have to agree to take charge in the mean time.

I read the result’s of a study recently that said that 8/10 RA patients either cope with much more pain than their Rheum thinks they’re in or see another doctor to obtain pain relief. Interactions that I’ve had with other RA sufferers online seem to support this. That’s fucked up.

My poor sister injured her foot a couple of months ago. At first she was told it was seisamoiditis (inflammation of the round – like a kneecap – bone that sits inside the pad where your toes meet your foot). Then she discovered that the GP failed to let on that her big toe seisamoid was actually broken. Now, after all this time, new x-rays show 3 seisamoids where there sould be 2. The broken one appears to be sliced in half. It might be dead. She has an orthopaedic surgeon appointment soon but they are also thinking possible RA because of my stuff.

I am terrified for her.

We were talking the other day and she told me how sorry she is that she hasn’t done more to help me. These new developments have had her googling RA and that, combined with the fact that she’s been forced to rest her foot for the last two months, has suddenly made her realise what I’ve been living through. I cried. I haven’t been upset with her, not a bit, because I don’t go into a lot of detail with family and friends, they mostly don’t know how bad things are. Actually, it’s this blog that cops all of the whinging. It was nice though, to have someone in my day to day life really get it.

There probably isn’t much she could have done, throughout all of my crapulence, to help but knowing that she understands, even a bit. That helps so, so much.

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5 responses

  1. I can’t access any good pain meds so all I can do is send hugs and virtual chocolate.
    I hope the pain disappears or that you find balance in the med regime. Good luck.

    • I had problems commenting on your blog yesterday, not at your end, at my end. I can’t believe your ankle. Jesus woman. I have built up to the good pain meds over time, I am also uber-resistant to the effects of opiods so I need quite strong ones to have an impact. I will either email you or comment on your blog tonight. Just know that as far as I’m concerned, you are a crazy person!

  2. You know you can bypass the Rheum and see a geneticist for the hypermobility, don’t you? And um, yeah, hypermobility causes ALL the symptoms you have been talking about – doctors just seem to disbelieve that it causes anything more than an ability to touch your toes.

    Love. xxx

    • I know, I know. I am going to organise to skype with you once you get back home from Tas. We’re askng for a geneticist referral. I’m not fucking around anymore. I wouldn’t even know about it if it weren’t for you. xxxx

  3. The endometriosis comment reminds me of when I was pregnant and hemorrhaging. I was examined by a doctor; had an ultrasound, etc; then was admitted to hospital overnight. I was asked twice by two different nurses if I was sure it wasn’t just hemorrhoids. Seriously? It’s hard to believe a patient wouldn’t know the difference, but apparently, they also believe their doctors wouldn’t pick it during an examination.

    It seems to me that if you have an illness that can’t be easily diagnosed, it’s your fault. You must either be a junkie, a malingerer, a hypochondriac or mentally ill, because it could not possibly be that they’re just not up to the task.

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