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It’s a shitty club but welcome nonetheless

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Everyone who’s ever read this blog knows that I have struggled with joint pain. When I got the diagnosis of Rheumatoid Arthritis I was so relieved. I felt that things might start to get better, I was very optimistic.

I have this friend who also has suffered with a lot of joint problems and assorted body crap. She had a long journey but she finally got a diagnosis of Ehlers-Danlos Syndrome.

As time went on I became much less sure about how well the diagnosis of RA fit me. I was still optimistic that the Rheum would be able to give me a magic pill and make a lot of things better but I also struggled because her ideas about what I should be experiencing and my experience of living in my body were not all together in agreement.

Now, as we compared notes, my friend subtly (read – like a sledgehammer) began to suggest that I showed a lot of symptoms of EDS. She felt that maybe I didn’t have RA at all and kept on ever so gently prodding me to investigate the possibility of EDS. It’s true, I was resistant to her message at first. I had a diagnosis and I was sticking with it. What was her deal wanting to spread her diagnosis around?

Eventually though, after more consultation with her and a fair bit of my own research I went to my GP and asked for a referral to see a geneticist. I managed to convince GP that it was worth a shot, although she was quite skeptical.

It’s been a year since that referral was sent and I have to admit that I’ve doubted the need for it at times. My Rheum outright laughed at the suggestion that I might have EDS. My pain specialist assured me it was irrelevant as it’s not associated with pain anyway.

This morning I finally had the long-awaited appointment.

I’ll admit that I was nervous, I have had some really hit and miss experiences with specialists but I calmed my nerves with the thought that if I didn’t have EDS, that wasn’t so bad and if I DID have it, well, I could give a pretty big fuck you to some of my doctors. So worth it. As it happens, it was really, really worth it.

The Geneticist (Mr Genetics Man) was one of the loveliest specialists I’ve ever seen. He conducted a very thorough examination and (surprise, surprise) informed me that he thinks I DO have Ehlers-Danlos Syndrome. I actually thought I misheard him at first, I was so sure that this would likely be another dead end.

I think Mr Genetics Man  had read my hospital file (complete with details from the ever-charming pain management team) because he was very quick to re-assure me that it’s really common for EDS patients to be misdiagnosed, to be told that they’re just depressed, imagining it, faking.  He wanted me to be clear that the type of EDS that I have (hypermobility type) is extremely painful. That he sees patients who have suffered a great deal, having consulted with doctor after doctor who can’t understand how there can be so much pain when they can’t see anything wrong. He said he sees patients who have been angry and depressed, but it’s because of the level of pain and the lack of understanding from doctors.

Now, there is no treatment for EDS but such a weight has been lifted knowing that I am now dealing with the correct diagnosis. It’s the first time that all the pieces have fit. We still have to pick apart what’s going on, whether there is RA too or whether it’s just been EDS all along (I suspect the latter).

I should probably be a little bit less jubilant over the diagnosis of an incurable genetic syndrome that I have likely passed on to at least some of my kids. I’m sure that it would be worrying for some people and I do worry for my kids, I hate that they might face some of the challenges that I have faced with my unruly body.

The thing is, this diagnosis gives me a sense of having all the power again. I may not have control of much but I now get to tell my doctors what I am experiencing and I have the diagnosis to back it up. My Rheum can no longer say “that can’t be happening – you must mean this” (really, she really has), she has to listen and open her mind a bit to the possibility that I am best-placed to describe the experience of being me.

It’s true, I have a genetic disorder that can’t really be treated but today I am much more at ease within myself than I have been in a long time.

So, I’d like to thank my subtle as a sledgehammer, ever so persistent friend. Without you Veronica, I wouldn’t be in this place. I might have gone my whole life without knowing what was really wrong with me.

As you pointed out to me, it might be a shitty club, but we have black humour.

We have the power that comes with knowing, too.

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A bit of this, a bit of that

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I’m struggling a bit at the moment. My body is deteriorating ever so slightly all of the time. There are many nights that I think about blogging but seeing as I usually can’t move my hands by that point, or sit up etc, etc, it never seems to happen. I promise myself that I’ll manage it during the day but I’m only just successful at dragging myself about, doing the things that my family needs, there is never the time or the energy for even opening my laptop.

All of that must sound pretty grim and in some ways it is, I’m worse than I have ever been and I am trying to manage that with almost no pain relief. I am happy not to add pain relievers to the chemical cocktail that I must take every day but I also sometimes just wish for a break. The funny thing is that I am probably happier than I have been since my disease began. I can accept it (which doesn’t mean it’s any less draining!) and I am just getting on with life instead of fighting against being ill all of the time.

My big girl started highschool this year, I was so stressed about it, she’s such a naive and I suppose sheltered girl. I don’t really know how that happened! As is usually the case though, she has surprised us. Poss has taken to her new school, new friends and new responsibilities with ease. As long as we don’t focus on the lost USB and house keys – aaaarrgghhh! Who puts those things in a non-zip pocket? They were on a lanyard for a reason! She’s off to her Year 8 camp tomorrow  (ooh crap – remind me to go and get small tube of sunscreen, won’t you?). She seems happy and she seems more mature every day.

Rhubarb (he’s 16 now, the horror!) has started Year 11. Despite serious finger wagging talks before school resumed he came to me last week with a look that said “I am weighed down by the weight of a thousand weighty things” and asked for some guidance with an assignment. There followed three hours of sitting with him while he worked and gently nudging along the process. In fairness to him, he’s doing a lot of pretty heavy-duty subjects and even if he asks for help, it’s for small things rather than “could you just write it for me, Mum?”. Mainly because he knows I would laugh. He told me that maths (which is usually a strength of his) has started moving ahead of him just a bit too fast and he feels like he’s not keeping up. It’s just hit him that this is quite a serious business and it’s not getting any easier from here on in. He’s finally accepted the wisdom of our approach to homework scheduling but he has accepted it in that resentful, I’m not acknowledging that I have accepted it way that only teenagers can muster. I know he’s 16 and it’s to be expected but could he be any more moody? And there are girls hovering around. Do you realise that I am not yet 35 and could end up a Nana by the time I am if he’s not careful. It’s terrifying.

The little two are just as time-consuming but more cute so it evens out.  Okay, here is where I am really concerned about how little I have been blogging. I can’t remember what I bloody call the 6yo here. That’s troubling. I’ll have to remember that or think of something else by the time I come back to update about them. That’s the thing about infrequent blogging, there is so much to say that the posts become epic and completely without focus.

I shall return soon.

Filling you in

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See, I’m doing better already, I knew I could do it! But then, there’s something quite addictive about writing some ungrammatical shite on the internet and having people come and say actual things to you. That is, if you check your email and actually read those actual things, which is obviously something I also have to work on. Baby steps.

I have photos of people (Poss) graduating from PS and being all grown up and gossip about Rhubarb  (almost 16! It’s getting interesting!) that I shouldn’t share but will (a bit – in the most respectful and discrete way possible*). Those updates will have to wait though because they require the uploading of pictures and I am knackered. Despite plenty of warning that Christmas was approaching I have still managed to overload my body doing last-minute things that need doing in order to have Christmas. I’ve had to resort to the good painkillers tonight, which hasn’t happened in some time.

Here though is a health update in bullet points:

  • The pain doctor who was okay but not great has been downgraded to a status of just barely tolerable if there are no alternatives, which there aren’t. He’s promised great mediocre things but not really delivered. Round one of drug recommendations were almost all unhelpful. The exception being a different med for neuropathic pain, which makes a noticeable difference. I’ve gradually stopped taking all but some pretty mild pain relief, it was a significant reduction. I seem to need elephantine doses of all manner of things so it’s a pretty big deal to be on almost no pain meds.  Round two of drug suggestions was slightly better, I acquired one more med aimed at reducing muscle spasms but it’s not fabulous, just okay. Also, if you were to shake me now, I’d rattle.
  • The MRI results showed a few disc problems and a few things that Dr Passable said were obviously a source of pain. Naturally he then failed to move forward with a plan for treating said things or give any clues as to what might have caused them. It wasn’t until after that appointment that I realised that he had not actually ordered the correct type of MRI to properly investigate MS. Not that I am really worried about it but you’d think that (it being a stated goal of the MRI and all) he would’ve done that part correctly.
  • I’ve now organised through my GP the appropriate referrals for my discy problems. I didn’t bother pressing too hard on the “thingies” on the MRI, I have doctor exhaustion, I’ll think about it next year. Maybe.
  • Over the last several months my usual intermittent numbness, tingling, buzzing, burning etc in extremities (and other places) has increased in intensity and frequency quite a bit, to the point where I’d almost class them as a new thing. I mentioned it to my GP and she said not to worry. I told her that I wasn’t worried, however I feel that it’s prudent to mention these things just in case it comes up in two years and she asks me why I never mentioned it. She was also pleased to note that it couldn’t be to do with, say, MS because we checked already. I couldn’t bring myself to argue. I mentioned them to my Rheum the other day and she barely skipped a beat before ordering a nerve conduction study, which is tomorrow. The one thing that has come about really quickly and I hear it’s painful, or at least that’s what Rheum said. Bastards. She’s optimistic that I don’t need a proper referral to a neuro just yet (only a temporary one for this test) so that’s some sort of upside I think.
  • I’m coping a lot better with my pain levels. I am in a bit less pain thanks to some of my new meds but have also come to a good place of acceptance about things. I think it’s just about coming to the end of grieving for the loss of function and the being all pissed off about it and getting on with trying to manage with life the way it is. I still hope to get a bit better if we can work on pinpointing some other things but I am not counting on it any longer.
  • There are other things I won’t bore you – just niggly weird things my body has decided to throw into the mix. I think they constitute a whole post though so yeah, actually, I suppose I will bore you with them at some point. Lucky you.

I shall return with some sort of Christmas post in the next day or so. I am determined to find the time somewhere. It will likely be simply a photo of me wrapping presents but it will be something.

It’s a big day tomorrow though, I’m having a haircut. I last shaved my head in January and it’s now made it halfway down my neck. I am a hair-growing wizard. It will be interesting to see if the hairdresser (who is a friend and had better not give me a bad haircut as that’s what led to the head shaving in the first place) can make anything good out of it. We shall see.

 

* I obviously respect Rhubarb’s privacy (especially here) but there are some things that I am bursting to share. On the other hand, I am banned from discussing him in any way with friends and relatives. For instance, if I were to mention to my friend that he needed new jeans, that would be in breach of his rules. Really. Bless him.

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.

 

 

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

I’ve got the FEVER!!!!!

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You know how it is.

You blog, play on the internet for a little while, then leave your laptop open, sitting down the end of the bed. Beefy closes it when he comes to bed.

The RA fevers, which are new to me (I thought I’d craftily got myself drugged up early in my disease and wouldn’t get them, wishful thinking much?) are bad and you can’t manage everything, getting out and opening the laptop seems so hard, and you wouldn’t be able to concentrate anyway. It’s best not to be too out of it when you’re going for a jaunt around the internet, anything could happen.

You check your phone for emails that need replying to and there are none.

It doesn’t occur to you that the laptop stole them while it was open.

The house is running out of food, you can’t put off the online shopping any longer.

You open your laptop and whoosh, it fills up with emails. Comments that you haven’t replied to, emails that you haven’t responded to.

You feel guilty.

Everybody else seems to manage to blog constantly and be all over twitter and, and, and.

I’m sorry that I’m a bit crap. My body makes demands that I can never seem to meet. I feel like I’m always falling a bit short, sometimes a lot short. I find it so hard to keep up in all aspects of my life. My kids get less, my husband gets less, my friends, my housework, my hobbies. Sometimes I feel like I’ve come to terms with my limits. Other times I am still longing for who I used to be, longing for everything to be easy. still put on the good front for almost everyone. Why do I do that? I think it’s because I’m embarrassed, I’m prideful. I don’t want anyone to see me as less. But it’s true, I am less. Less everything. Even though I know that this is life now, I don’t want to change how I see myself. Letting go of that other self. That self who was more. Who could do more.

Wow, I think I’m feeling a touch melancholy today, moving along.

As promised, a photo of the very green bathroom:

Now, when I bought my sarape, I promised that I would provide a photo to demonstrate the awesomeness that is the blanket. Today, whilst still in my pyjamas, with bed hair, I tried to take a photo of myself with my blanket. I couldn’t get a good one so I asked Poss to help me. She LOVED helping me take photos and we might have gotten a bit carried away with the posing and the giggling. In the end she took A FUCKING LOT. So, I thought I would share with you a selection of the photos we took, including the one where I hurt my back, see if you can spot it. I don’t know why I said that, it’s not hard to spot. Anyway, enjoy!

P.S. I don’t even let photos of me be on the wall, there are three small wedding photos and that’s it. I can’t believe I just did that. Blame the fever.