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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.

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.

Ahem

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It would appear that the whole returning to blogging thing is  going to take a leeettle bit more conscious effort on my part. Who would’ve thought?

Weeks just seem to disappear on me and I don’t know where I put the time that I used to make for semi-regular blogging, I shall have to find it again.

So I promised good and happy things.

One especially happy (and bitey) thing that came into our lives recently is this:

She is both a delight and a menace. I am particularly unimpressed with the holes in Gecko’s new summer clothes but then she does dangle them in front of Berry and giggle hysterically when she bites.

There was much debating about breeds and things, I favoured another lab because I love our big black girl and I don’t particularly like small dogs and Beefy was adamant that we have a smaller dog that sheds less hair. Gladdy the black lab sheds a ridiculous amount and we find it EVERYWHERE. In the end we settled on a Spoodle and, despite some bickering over which pup would be ours, Beefy and I agreed in the end. It was quite pain-free (considering that we are two very stubborn individuals), actually. We both liked Berry as we walked into the yard and although we got distracted by all of the cute and the puppy (so much divine puppy) we really knew that she was destined to come home with us. She looked very different from all of her mottled and curly coated siblings, favouring the cocker side of the family.  I’m not so sure that bodes well for her low-shedding qualities but we love her nonetheless.

Gladdy reacted very badly to the presence of Berry. She refused to look at us (or the pup) or come when called for the first week. I never knew she was so accomplished when it came to pouting. We bought the puppy in the hopes of bringing a bit of life back to our aging (8yo) dog but she steadfastly refused to play or interact at all with Berry. Even showing very uncharacteristic aggression towards her. We paid Gladdy lots of attention and kept pup from annoying her as much as possible but it took four full weeks for Glad to begin playing with and accepting her. I don’t think that was helped by Glad’s unfortunate vulva abrasions (injury by puppy)or the fact that Berry kept nipping at her belly in an attempt to get milk. Now though, they play loudly and often, Berry is even mimicking Glad’s behaviours. It’s lovely to watch.

Now if only she’d learn to pee outside consistently. She’s figured out that pooping inside is a no-no but weeing is a bit hit and miss still. Glad was so easy to train, she was horrified at the thought of doing her business inside after a week or so at home with us but Berry believes the world is her toilet.

So, there you go, a puppy – doesn’t get much happier than that.

I have a lot more to offload. I’m sure the two people who read this will be dying to receive a comprehensive update on my ever-intruiging clusterfuck of a body. Ooh, ooh, I’ve also got delightful tales of idiocy concerning the father of my eldest two children.

Stay tuned.

back

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So, I did it again, dropped out of online life completely. I feel quite guilty, missing so many things in people’s lives because I care and I miss everyone and I genuinely want to be around but this time it’s just been absolutely vital that I have a break.

As I already mentioned, our friend B passed away. Now, both of her daughters are just about my closest friends in the world and there were aspects of that loss that were very hard to cope with (aren’t there always).

Whether through stress or just my body deciding to fuck with me, I’ve developed new strange symptoms and been pretty consistently crap, nothing new.

Then to cap it off, just over a fortnight ago, we lost Beefy’s uncle, someone who was quite special in our lives. We saw him just the day before and although he didn’t really know that we were there he knew that people were there laughing and telling stories about him and being a family. I’m so glad we decided to go that day.

The real clincher on the horror that has been the last few months is that Beefy’s uncle also happens to be the father-in-law of one of my dear friends who lost her mum B – her partner is Beefy’s cousin.

They just had their second baby, between B’s passing and Beefy’s uncle’s passing. Joy and pain intermingled. How do you make sense of that much life change in such a short space of time?

So you see, I would have been coming here and sharing all of the sad and horrible and the crap, and I didn’t really feel inclined to do that.

I’ll try to get around to everyone’s blogs, I need to catch up on evryone’s news.

I have lots of news to share too.

Nice stuff, I promise.

RIP

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You were a generous and loving mother & grandmother. To me you were a very caring friend.

I will always think of the kind things that you did for me and admire the devotion that you showed to your family.

I promise to try and look after your girls, as best I can.

Rest in peace, B.

It was a privilege to know you.

We love you.

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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