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Today I went to a new specialist and they didn’t totally suck

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Well, today was my appointment with the private pain specialist. I was pleasantly surprised. Kind of.

He got off to a slightly shaky start, making what I can only interpret as a quite sexist remark within the first two minutes. Things mostly went up hill from there though. He is nice, well, reasonably personable which is enough for me if he can help. Not horrible, let’s call him that.

Now this one is for you Veronica, when we mentioned that we were waiting for a geneticist appointment and explained why, this is what he had to say: “Well, EDS doesn’t cause pain, so the only point of getting a diagnosis would be for classification purposes” (ie to make sure that it’s not vascular). When I most emphatically disagreed with him, his response was, “Well, EDS itself does not cause pain, it’s the joint problems you get that cause pain.”. I’m not sure how he makes the distinction between the two. Obviously he feels that constant dislocations and subluxations are painless. Moron.

Anyway, even though there were those negative moments, he really, really seemed to get my situation. He actually asked me relevant things. His physical examination of me was thorough. The most thorough that I’ve ever been subjected to, actually, OUCH. Interestingly enough, throughout his examination of me, as my body did it’s pop, pop, clunk, he joined in saying “pop, pop, pop”, so he obviously noticed that there is a significant hypermobility issue. Which I feel is a plus.

He examined my abdomen, which I initially thought was odd but it turns out I have a massive, hard something or other muscle in my abdomen. He commented that it’s unusual for that muscle to be so hard/spasmy or so prominent. When I asked him what that meant he said that it indicates sacro-iliac instability. Which I’ve been told that, despite my pain in that area, I totally don’t have. I told him I might kiss him.

He did say that when he felt around that area, it didn’t seem that unstable to him but he also said that it still might be quite unstable. Either way, despite being unable to pinpoint what’s exactly wrong, he said there is definitely a back injury there somewhere. He said parts of my spine are very sore to touch (‘cos I didn’t know THAT!) and we need to do a full spine MRI to find out exactly what’s wrong there. Huzzah!* He did also comment that he thought I was less hypermobile in my lower limbs than my upper limbs, which he said wasn’t unusual. I only realised afterwards that I didn’t show him my pop my hip out trick!

He said that the diagnosis of fibromyalgia is crap. He thinks I have some neuropathic pain but I don’t actually fit the fibromyalgia criteria properly, actually, he said I don’t fit any diagnosis neatly. He hopes that the MRI will rule out a few things, scary things like MS, which despite my scoffing is still a possibility, apparently. He rattled off a few more things that he thinks it might be, some more scary than others, so we’ll just have to see.

He believes that I do have an inflammatory arthritis along with other things that are creating this strange and complex picture. To me he seemed like he had more knowledge than all the PMU doctors combined.

He just understood that opiates work really oddly for me, in fact he barely batted an eye at it. He’s sending a list of meds to my GP so that I can start trialing different things. First on the list is a tranquilizer so that I can sleep. That is a definite huzzah! The most I’ve received from other doctors, in relation to sleep problems, is a pat on the hand.

Finally a doctor who is not a complete tool. That could have been my entire blog, really.

 

*Not huzzah for the MRI, I fucking hate MRI’s, but because he KNOWS there is something wrong. He wants to help, not just decide I’m a drug-addict/seriously mentally ill and take away pain relief then send me to a psychiatrist like the PMU.

 

 

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Poor Time Management and Running, Running, Running

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I’m not keeping on top of things. I am trying to push myself as hard as I can during the day. I am still struggling with the concept that I can’t do things. Of course, I try to protect my body as much as I can but I just get so frustrated with the mess and the jobs left undone and, and. I think I’m trying to claw back just a bit of functionality, the amount of pain medication it takes for me to do that is immense but I suppose that’s just how it is. I am seeing the private pain sepcialist on September the 8th and I am just hoping, hoping, hoping that he will have some new ideas, my GP desperately wants someone to share the responsibility with, she’s a nervous wee thing.

Over the last couple of weeks I have written several part blog posts, I just never quite get the time, or  I suppose, the time and energy in combination to complete them. I have been missing my online life so much, I have to try harder to pull the time and energy from somewhere.

Skunky’s birthday was mostly good, the cake was really cool, if somewhat disturbing. What can you do though, when your six-year-old wants a zombie head on a plate for his birthday cake? He triumphantly chopped the head in half, shortly after this, to reveal the bright red contents.

I managed, with the aid of a bucket of painkillers, to keep myself going throughout. As a result of my charming mother I ended up in my room with a friend having a little weep. I always forget her capacity to be completely self-centred,  it’s wishful thinking that makes me believe she’ll be kind or helpful or supportive. Thanks to my lightning fast brain I had my retribution. I forgot her birthday yesterday until about six o’clock when I noticed that people had been sending their well-wishes via facebook. I had even been texting her throughout the day so it just shows how talented my brain is, I think perhaps Brain did it on purpose. Did you Brain? It never answers me, bastard.

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Finally the warm weather is making an appearance. Skunky had been agitating for a visit to the spooky trees (immense Moreton Bay Fig trees in Botanic Park) so we headed there for a picnic on Sunday with Poss, Skunky and Gecko (Rhubarb declined on the grounds that he would rather be alone at home and we suck, which was nice, 15’s a golden age). It was lovely and the kids had a ball climbing around on the tangle of roots.

And running. There’s something so beautiful about watching Gecko run, she’s very graceful, for a girl of 3, graceful and fearless. I adore this picture. I was watching her run with her hair trailing behind her and I had to capture it.

And now, I’ve done something terrible to my left shoulder (the bad shoulder) in the act of typing and if I don’t stop I fear it will fall off. Pain relief, here I come.

 

My body is a mofo part the millionth and how to get that pool of blood to look just right.

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It really sucks balls when I am too sick to blog or even spend time with the interwebs for more than a few minutes. I don’t have enough readers to float the notion of guest posters and such so my blog lies dormant. I have words, so many words, but I sit here muttering them to myself because the notion of getting out the laptop or iPad and sitting and concentrating so that I don’t prattle on and embarrass myself, well….

My body’s decided to issue a resounding fuck you, evidently it felt that all of the ongoing fuck yous were not sufficient. At my GP visit last week we were told that my most recent blood tests showed a further (significant) drop in my white cell count. Now my platelet is down too. I don’t know if that explains all of the shit my body is serving up but it might. Maybe not everything, the fact that I am getting virus after virus and that I seem to need to sleep and sleep and sleep, almost certainly.

Ordinarily I can do an hour or two of normal everyday activity before I have to rest, sometimes more on a really good day. Although that’s not ideal it means that I can kind of maintain the illusion of being functional, mostly for myself but also for my family. Do you know how it feels to have your kids watch you lie around and do nothing? To fail them in every little thing that you used to think made you a really good Mum. I tell myself now that all of the love is what matters, that they’ll know I tried and I wished for it to be different, that they’ll understand. There’s always that little bit of my brain that reminds me of my evil Nana (my Dad’s mum), Mum telling me how she took to her bed for a couple of years and did nothing. That tone of disapproval in her voice. Not that my Mum would win any awards for her mothering but that’s something else all together.

At the moment a walk to the bathroom leaves me exhausted and sore in more places than I can count. Regardless of how I feel I have to keep functioning to a certain extent, so my body and I are fighting. It tries to make me fall asleep at inopportune moments and makes sure I injure myself in carrying out the least demanding of tasks. Which is kind of normal but this is normal times a million.

This week, it’s Skunky’s birthday on Friday and we are having a party on Saturday. He decided not to have a school friends party so we just invited a couple of friends and grandparents, aunties and uncles along with a bit of my extended family. At the very least there will be 9 kids and 12 adults including our family. There may end up being more. I tried to keep it small. Clearly I failed. Have I mentioned that our house, especially the living space, is tiny. Ti. Ny.

When you mix together the fact that I have been sick & the house is a sty, the fact that I have promised Skunky a red velvet zombie head on a plate cake (no school friends to offend) and the fact that I can’t have a party unless everything is clean & pretty & the food is awesome, put in a bowl and then bake it for a half an hour in a moderate oven you end up with steaming shit pie.

My pain levels have been going up. I ran out of the super strong anti-inflammatories about a month ago and I keep forgetting to get another script from the GP (she hasn’t asked because Rheum usually prescribes it). I think that’s having a pretty big impact but it isn’t a relief to know that without them I am in as much pain as ever. Why am I taking these toxic drugs that are killing my immune system if I’m still just as bad? Beefy and I talked about it tonight, I’ve decided to tell the docs that I’m stopping. I’m not convinced that the drugs are helping at all, I’m not convinced I have a reliable diagnosis, even though Rheum swears by it. I don’t know what IS wrong with me but there are things that still aren’t covered by my current diagnosis. I am looking into it.

Anyway, enough of my whining, I must save my energy for making meringue brains and for figuring out what to use to get the jelly to set into a convincing pool of blood around the zombie head. I shall keep you abreast of developments.

In which I am not good at being a basket case

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I’ve been seeing a psychologist to try and “discuss” how my pain is making me feeeeeeel.

The thing is. I don’t think I’m very good at it.

I think – and this is just a guess here people, correct me if I am wrong- that I am supposed to tell her stuff and it will help me feel better and I will gain a deeper understanding of my inner workings. The thing is. I think I am just too private a person  (says she airing her innermost for strangers on the internet) to make it work.

First of all. I spend half of the session consciously forcing myself to make eye contact with her. I am really bad at eye contact in this sort of situation. I want to crawl into a hole. So I am there trying to make myself look at her and internally debating with myself that it’s probably okay not to make eye contact all of the time and then realising I’ve stared at the table leg too long.

Then I can’t decide what I am supposed to say to her. I mean she asks questions and things but they are so open ended and I could go in any one of a billion directions with it and half the time I find myself meandering off in some unrelated direction and having to somehow swing it back to something remotely related to what she was trying to get at. Then I am sure I have done it wrong and then I have to pretend that what we have been talking about has somehow deepened my self-understanding and given me things to think about. What I am actually thinking is, oh my god, how am I going to think of things to say for the next forty-five minutes?

It doesn’t help at all that I am actually emotionally fragile at the moment. Look at me the wrong way and I will either cry  or in the case of Beefcake cry and attack with the nearest sharp object. I probably do need to “talk” to someone about “things” but I just don’t think I am going to be able to really be open and honest with a complete stranger.

I mean, I say stuff. I have plenty of juicy and significant life history to share, all very meaning-laden and important BUT I’m pretty lazy* really. I can’t be bothered rehashing stuff, or maybe I don’t want to think too deeply on things, I don’t know.

Either way I think I am done with it. We have talked about some things which have helped in a way. We have talked about how I am, by nature, not kind to myself. We have talked about the fact that this is not good. I have cried a lot but as I previously noted, that’s not really a feat at the moment. I saw her today and left utterly exhausted. I feel so on my guard while I am there that it’s completely draining.

I am so self-defeating aren’t I? Go on, I know you were thinking it. I think I shall try and leave it for a while and see if I can come back to it later. That sounds good, yes? Considering I have to spend days mentally preparing for any appointment with doctors or anyone really (or you know, working up to making a phone call) I think this is just one more health professional I don’t need to have to deal with at the moment.

I will have to convince Beefcake that I should be allowed to crawl into my little doona cocoon and hide from it all for a while longer. That will be easier said than done as he is all about the making me do things that I don’t want to do.

Bastard.

*Dingdingdingdingding – a word I am not supposed to say or think in relation to myself. This stumped me for a good while as I was supposed to think of a word that I should say/think whenever I say/think that I am lazy. That was really HARD.

My immune system is an arsehole

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We’re on trial of drug number 3 now. The first two didn’t do a thing for my joint pain or inflammation. Meanwhile, my immune system is going into meltdown and one by one my joints become stiff and painful. This drug I am trying now will take 3 months to start working. I think we are into week seven or eight of taking it now. My rheum hoped that the cortisone injections would cover me until the new drug miraculously worked.

I was really, really awesome for a few weeks. I could drive a car, I had loooooads of energy and felt free to move about – well more free than I have in a long time. About two weeks ago the pain started to return. Everything seems to have escalated dramatically. It’s as though my body is punishing me for daring to try and be functional.

List of joints which now are inflamed and arthritic (in no particular order):

  • All fingers
  • Both wrists
  • Both ankles
  • Both big toes
  • Right elbow
  • Pelvis
  • Both Shoulders

My immune system is an arsehole.

I am mildly allergic to oranges, as in, I can eat them but if I eat too many or get any juice on the area around my mouth then I will get a rash or eczema. Yesterday, after I had sliced oranges for the kids, I made the mistake of eating a small piece. My lips are now so swollen it looks as though I have over indulged in the latest lip plumping chemical. Add to that the cold-soreish eczema on one side of my mouth and you’ve got yourself a really pretty look.

I’ll say it again. My immune system is an arsehole.

I’m trying to maintain some sort of optimism. I reeeaally want this new drug to work. Really, really. It’s just, it’s getting a little bit hard to be upbeat about it. To field questions from concerned or interested people without turning into a hysterical puddle of snot and throwing things at them. You would think a very tight-lipped “I’m fine” would give them enough of a clue to shut the hell up but apparently no.

My pain-killers don’t really do anything any more.  Beefcake  forced me to the GP today to discuss pain management. I would have preferred to hide my head under a pillow and moan. As it was we waited for nearly an hour to see the doctor but she really was lovely. It was the same one who referred me to the rheum and today she was all about getting things happening, a mental health plan (so that I can see a psychologist to talk through some of the strain that all this pain has been putting on my poor wee brain), a referral to a pain management specialist and some new pain relief meds so that we can get things under control while we wait for the arthritis drugs to work.

I cried. I didn’t mean to. Truth be told I am still pretty embarrassed about it but she was so very nice and so very sympathetic that I just lost it for a moment. Oh well. I am reluctant to go and see a psychologist but perhaps it will help. Maybe.

All of the children, to varying degrees, are becoming resentful and grouchy about my inability to do anything. Rhubarb, who at 14 should really be the most able to understand that it’s not really my fault, seems to take it as a personal affront to him.

Because he’s 14.

So, here’s to hoping that the new (very strong) pain meds will give me a break. Apparently I need it.

Documenting

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I think about blogging every day. I mean to but I just don’t have the energy to invest most days. I feel sorry for that. Most of all because I am not documenting stuff about the kids that I know I’ll forget.

I feel guilty about not commenting. I keep a ton of posts unread so that I can go back and comment later. Some people’s posts go completely unread so that I can save them for a time when I can really concentrate and give them the attention they deserve. None of it happens. I feel more guilty.

I have a couple of award/memes that I really intend to do but have still not gotten around to. There are one or two people who I really need to post about and link to because they’ve done something lovely for me. I haven’t done that either.

In short, as a blogger, I rock.

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Today I went to a local hospital and lay on my stomach in a cold room that smelled of alcohol swabs. I lay still, breathing only when a machine with an American accent told me that I could, as the techs took x-rays and made marks on my back. A doctor came in and introduced himself, he swabbed my back with betadine and injected a small amount of local anaesthetic into the skin around my sacrum (triangular shaped bone at the back of pelvis). He and a tech, dressed head to toe in protective gear, turned on the CT machine and I lay perfectly still as they slowly inserted a long needle into the joint between the sacrum and ilium. Once the doctor was sure that the needle was positioned just right he injected a mixture of coritsone and local anaesthetic into the SI joint. He said “there will be a bit of a sting” but what I felt was the most agonising and profoundly wrong sensation I have ever had to endure.

I am au fait with pain, I consider myself a  pretty tough cookie. This made me whimper and weep. To lie perfectly still while he inflicted this on me went against every instinct. And then he did it again, the second side was worse. They told me it was so bad because the area is extremely inflamed. The steroid injections sends all the inflamed muscles into spasm. They are still spasming merrily away.

So now I have to wait. It should be a week or so before we know if it will help. I really hope that it does. Also, I hope it doesn’t because if it makes me all better  for a while then it means I will have to do it again. I will need a serious dose of sedatives to tackle that.

Hopeless cloth nappy hunting addict

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I have been spending waaaaay too much time hunting for little  nappy icons. I can’t help myself, this is my fourth hunt and once you start it’s very easy to become hooked.

I am neglecting all of my other duties. My children are getting around unwashed and unfed (well, not quite but it’s just lucky I have Beefcake). I have sore swollen hands from click, click, clicking my mouse looking for that tiny nappy. It is not compatible with arthritis.

Speaking of arthritis, I had my Rheum appointment. As I suspected would be the case, my x-rays showed a normal pelvis. Okay, not normal exactly but there were no signs of arthritic change. You can see marked asymmetrical separation of the pelvic bones, which I suppose is a validation of sorts but it didn’t stop me from bursting into tears. If there is nothing concrete to treat then my problem remains untreatable, you see. I feel desperately low at the thought of having to go on like this indefinitely. I feel very lucky that my Rheum takes my pain very seriously.

The plan of action is as follows:

  • Stay on arthritis drug that hasn’t yet worked as it still may start to have an effect.
  • Have an MRI to have a better look at my pelvis.
  • Have steroid injections into the joints of my pelvis – this should (in theory) really help.
  • Start a new and very toxic (actually used for chemotherapy) drug to see if that also helps.

It feels good to have a plan in place but I am also a bit sad. The new drug is most definitely not compatible with breastfeeding. I have allocated two weeks to wean Grub before I start taking it. She is doing ok. She is at two feeds a day and so far I have been able to put her off when she asks for other feeds. I am trying to drop the first thing in the morning feed but I have to admit that I am struggling. I keep looking into her sweet face and thinking there are so very few feeds left. I don’t want to tell her no. I know it’s best to gradually wean over these two weeks but I actually feel like I want to fit in as many feeds as possible before it comes to an end. That must sound so silly but she is my last baby and…… I will miss it.

Well, because I am now bawling I think that’s all I have to say.

There are still nappies to find.