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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.

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Ponying Up – also, as an aside, winter sucks and can go away now

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I had a Rheum appointment today. Went well, for the most part. She went through with me exactly why she KNOWS I do have arthritis, no matter what my blood tests might say. She gave me some ammunition to fire at any health professionals who seem to think my arthritis is in my mind. I may not have mentioned but I am seeing the physio who I originally met through the PMU and she holds to their assessment that there is no physiological cause for my pain. My first session with her was mostly a stressful update interview where she implied (heavily) that I should be seeing a psychiatrist and commented that it was good that I now had a proper diagnosis (FMS). Cue conversation that consisted of me almost shouting at her that I DO in fact have arthritis (I may have been getting a bit tetchy by that point) and her offering the condescending query as to whether my “arthritis” is showing up in blood tests now? I have decided that free physio is worth me steeling myself to her annoying attitude. I don’t really mind that she believes I am just in pain because I haven’t been exercising enough but it will proceed more smoothly if I feel strong enough to tell her to shove it (politely of course).

Anyway back to the Rheum, god, have I mentioned I love her? She’s just a darling. Beefy was there to add his two cents. I am a crappy patient, I tend to get all meek and not say any of the things I planned, he has no qualms about saying what he thinks and that can be a big help. She’s going to research some meds he suggested for muscle spasm and forward her suggestions to the GP.

It was also quite an enlightening examination. She pointed out that she can press much harder on my joints. Not something I’d ever thought about but she’s right. There are still parts of me that react to a feather-light touch as though I’ve copped a punch from a heavyweight boxer but overall, I’d say that my stupid overactive nerves seem to be chilling out a bit. I reluctantly have to concur with the FMS diagnosis now.

We’re gearing up for a certain 2-year-old’s birthday on Saturday, I am in complete denial about her turning 3. I still call her “the baby” by default. I have a feeling she’ll still be “the baby” when she’s 21. Actually I once knew some parents who couldn’t agree on their daughter’s name. They chose the Dad’s favourite for her first name and the Mum’s for her middle name. The thing was, because they both hated each other’s naming choices they called her “Bubba”. Fine when she’s a baby, even a toddler. Unfortunately she stayed “Bubba” a lot longer, I think they chose a name to call her when she was about 7. That’s just crazy, I’m totally not like that.

So, birthday. I’m really too tired for a birthday celebration at the moment. We’ve had the flu one after the other for the last fortnight. The two little ones went down hardest with nearly a week of 40 degree temps each. I was literally wading through snot and vomit. Beefy and I are on the mend but both big kids are home from school sick now. Ordinarily we throw a party but I just couldn’t face a proper one so we decided on just the grandparents and my sister, her husband and kids for cake. Now, recently my mother has been moving on with her life. This is a fabulous and happy development and I am thrilled but she’s kind of physically moving on without addressing any of the psychological baggage. Again, this is fine because it’s her life and all but she’s sometimes a leeeetle bit stressful to spend time with. My sister and I spend our time consoling each other and trying to find ways to gently suggest (not all that viable with my natural flair for sledgehammer subtlety) that she needs to think through her behaviour. So, she’s bringing the new man, he’s lovely, he’s straightforward and together and responsible and gentle. All of the things that my father wasn’t (isn’t). I am really happy for her to bring him but I know it’s going to be one of those occasions where I’ll be longing for wine. I called a friend today and she reorganised her life so that she and her hubby and kids could join us and she could act as a buffer. She’s a good buffer, she’s played the role for me before and knows just how to keep me from rocking in the corner with a bottle of vodka.

Beefy and I raced around today getting all of the birthday essentials. I was even able to grab a cheap pair of jeans for myself. I have been rapidly shrinking out of my clothes. Ill is the best diet. It’s been about ten years since I was this small. To be honest I was a little bit shocked with the size I ended up with. I think the weight loss can stop now. I feature a naturally pancake flat bum and I fear any more and I will end up with concave buttocks. Not pretty.

We managed to get everything we needed – presents, cake makings (My little Pony- Pinkie Pie cake, stay tuned for how well I mangle that one!) but by the end I was struggling to put one foot in front of the other. When we got home I managed to get myself inside and into bed but after that I was gone. I couldn’t sleep because of the pain and I was struggling to so much as lift an arm. I HATE that my body does this. If I do too much I have no choice. I can’t push through it like I used to, I have to rest. I am unable to even get myself to the toilet. I am not handling it that well, I just want to be me again. The new meds have helped, honestly they’ve helped enormously but I am at the maximum dose and I am not magically me again. Beefcake had to go and fill a script for the opiate pain meds that I had been off for six days. I was doing so well but there was just no choice. Bugger.

Anyhoo, exhausted now. Have to save my strength for tomorrow is cake baking, construction and crumb coat. I can’t flake out on that because there is no way for beefy to manage it alone, we are ambitious with our birthday cakes in these parts. Wish me luck.

Just ticking along, hopefully, I think

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What is it with me and the temptation to just pull away from everything that makes me happy when I’m having trouble?

I stop blogging first. Fair enough, when you’re going through “stuff” sometimes you just need to keep yourself to yourself*. The next thing to go is reading other people’s posts – I don’t want to comment because that would be like talking to people and we all know that’s the last thing that will help when things are going wrong in your life. So, no commenting means no reading because if I read I will want to comment and I can’t even wrap my head around what other people are doing right now so really it’s best if I just leave my feedreader right alone. Now, because I can’t read blogs, it’s better not open my laptop because if I do I will read blogs. I mean, that’s what the internet’s for, right? I can’t imagine what else people might use the internet for (with the exception of obsessive googling of course, but I can do that from my phone or Beefy’s my ipad. Also, I can’t email bloggy people, even those who have specifically offered their shoulder to cry on. Not because I’d have to open the laptop but because that falls into the category of INTERACTION.

Before you know it I’m just collapsing in on myself from all sides, making myself small so that nobody can see me. If they can’t see me they won’t try to interact with me. It all works really well. Awesomely, in fact, if you want to lose your mind.

I’m not sure why I need to learn this lesson over and over again. I need to blog and I need to interact.

I’m pretty pleased with myself though, I actually talked to my very dearest soul-mate friend about “things” and before you think that’s easy, it’s not. When I dropped out of my career 6 years ago to have Skunky she kept working. She now has a million and five things (including Ph.D- can you tell I’m proud of her?) happening and lives far, far away and between my four kids and her two and everything else, we have to schedule getting together (or even a long phone call) with military precision. When you add in my strong tendency to keep things to myself it’s really something to be proud of.

Then I got forced, literally forced, to be on the laptop. Beefy put a new operating system on for me and after a couple of false starts I LOVE IT. It’s all bright and shiny and new and he didn’t set anything up for me so that I could play and put things the way I want them and, and I can make it pretty. And it’s cool. And pretty. So I have to blog now because I can only play with it for so long. I have a short attention span.

Anyway, things are ever so slowly getting a bit better. It’s still not wonderful but I can go whole days without crying (much) and I can now believe that we might eventually return to the normal state of things at some point.

I’m not sure how things are going with my badly behaved and ornery body. The new pain med seems to be helping a bit but we will have to up the dose if I am ever going to function. I bent down for five minutes or so to pull a couple of weeds out of the vege patch on Friday and something in my back (pelvis) went “clunk”, which spelled three days of not being able to walk (really, Beefy had to carry me to the toilet, not fun). I keep saying to my Rheum and GP that things will click in and out and cause surrounding muscles to spasm. Everyone acknowledges that my body does things it shouldn’t but they don’t seem to be able to process how much the muscles spasming all over the place contribute to pain. You just can’t mask that sort of pain, you have to stop the muscles from spasming.

I feel like I’m at a dead-end. I know we’re not quite there with understanding what’s going on with the bod but I can’t seem to push them to see that too.

We went back and checked my diary to see of there’s any pattern to things. Every month just before my period I put my back out, that can’t be a coincidence, can it? I read something the other day that said that the increased relaxin levels in women at that time of the month can cause problems for those that have had pelvic instability during pregnancy. I’m wondering how much difference it might have made if I had seen that orthopaedic surgeon at a different time.

Maybe I just overanalyse anything. I can’t help it, I’m just looking for something that will make everything make sense.

Somebody needs to put me in a google-free environment so I don’t keep searching for answers. It’s an obsession.

Finally, thank you to everyone who contacted me, either privately or through comments. I’m sorry I didn’t get back to people, I just couldn’t, I’m sure you understand.

* Yes, I’m aware that I did blog about it. That particular post is gone now, for the time being, maybe. That’s probably wrong or not sharing things warts and all, not being truthful, whatever. I can’t bear to have it looking me in the eye when I come here.

Agitated in the bedroom

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Being in pain all the time is hard.

It does make me feel overwhelmed at times, and anxious and yes, even a bit depressed.

Depression was one of the key things that the PMU were focused on. They recommended that I begin taking an antidepressant. I suspected at the time and am now even more certain that they thought I was suffering from Fibromyalgia (FM), which is fine but if they suspected it, why did they not say that. Apart from being completely disrespectful, attempting to medicate someone for a condition without telling them you think they may have it? That’s just irresponsible and wrong. Were they planning to burst out of a cake bearing the slogan “Congratulations, you have Fibromyalgia!” at my review appointment and say “We knew you had it but we wanted it to be a surprise!”?

When I went to see them, I can see how they must’ve thought I was in a pit of deepest, blackest SAD. It was a combination of factors that made me so emotional when I saw them:

  1. It was very intimidating and confronting going through that whole process, it was just horrible, frankly.
  2. I had some of the worst PMS I’ve had in my life. The things that made me cry that week are laughable. Really, I was ridiculous.
  3. I was taking prednisone which makes me crazy (letsgetupat3amandcleanoutthekitchencupboards style) and also makes me cry at the mere thought of something emotionally stirring like oh, let’s say, bagpipe music. NOT joking.
  4. I actually was feeling quite depressed and anxious at that point BECAUSE OF THE PAIN!

Those things probably combined to make me seem like a complete loon and it’s no wonder they wanted me referred to a psychiatrist. I don’t blame them because they can only base their assessment on a brief snapshot of who I am.

It’s less easy to excuse the complete disrespect and disregard for the fact that I have never been depressed before (excluding a very bad teenage period). They questioned me about depression, over and over and over and….. you get the picture.

The other thing that I take issue with is the fact that they decided that my feeling depressed must be causing my pain. I tried to say that it was the other way around but they weren’t into that.

Lots of FM research suggests that sufferers commonly experience depression, I accept that, however there are also those who experience no depression or only experience it after the onset of pain.  It may be that antidepressants would help me but I would have to be a LOT further down the road of depressive illness to want to test that theory.

As it is, just the prospect that this medication might give me a bit of life back has changed my outlook completely. It’s amazing what relief it provides to have someone look you in the eye and say “I know you are in pain and we are going to fix it”. Just like that, a great weight lifted. I believe in R and she believes in me, that’s a doctor-patient relationship as it should be.  Trust and respect.

I belong to an RA forum and naturally, many of the RA sufferers there also suffer from FM. It is STAGGERING to hear how many of them have been told by doctors that FM is a fictitious condition created by bored housewives (really). I wonder, if it were a condition that was mostly diagnosed in men instead of women, how would it be treated? I wouldn’t mind betting that men wouldn’t be accused of having a “hysterical” condition and imagining their pain. It’s very frustrating that it’s such a long road for researchers to establish exactly what’s happening in FM but there are plenty of studies to show that there are differences in the central and peripheral nervous systems of FM sufferers. Actual brain differences. I wonder how the housewives managed to imagine that into existence? It surely can’t be a coincidence either, that 20-30% of people who suffer from another chronic pain condition (RA) also end up with FM. Sometimes the FM diagnosis comes first but there must be something going on there that connects the two.

At least I have something to research and get agitated about about whilst I lie here waiting for the medication to start working for the next couple of weeks.

Moving forward

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So, today was the long awaited Rheum appointment.

I finally got to see my bone scan report. I would have liked to see the actual images but they don’t include those with the report.

Basically, it showed nothing. I have no (or very minimal) arthritis activity. Very minimal inflammation. It did show some joint degradation, particularly in my shoulders and the joints between my collarbone/shoulder and collarbone/sternum. That’s a bit annoying as I had hoped that we had hit on the right arthritis drugs quickly enough that I would be without joint damage. It’s brought home just how quickly this disease can damage my joints and I’m now just really grateful that my arthritis is actually under control.

So, you may ask, why have I been in so much crippling pain?

After we discussed the bone scan I was a bit crestfallen, I was predicting that the next words out of R’s mouth would be to say that I am fine and I am imagining it all. I think that would have been the last straw for me. Fortunately, she was quick to reassure me that she knows I am in pain, the pain is just not inflammatory.

She feels that I am experiencing neuropathic pain.

In particular she feels that I have fibromyalgia.

I’ve always sort of thought that fibromyalgia was a bit of a weird mystery condition. It seemed so enigmatic. It didn’t make sense to me and I have encountered so much information that seems to suggest a strong association with depression and anxiety. I just never thought that I fit in to those categories. I’ve also read that there are still doctors that don’t believe in it.

I didn’t want to have fibromyalgia because it’s something that can’t be measured. There are no blood tests, you can’t have a diagnostic scan. It’s just a cluster of symptoms (many of which I have) most notably for me though, fibromyalgia causes serious pain.

I didn’t want to have fibromyalgia because I didn’t want to add another illness to my repertoire. I’d like to stick to just the arthritis, please.

I don’t want to be the person with a hundred different medical complaints. Do you know how that sounds when you see a new health professional? I have this, and this, and this. Sound like a hypochondriac much? I hate being unwell and I hate being in pain and being labelled a hypochondriac, that people might think that I want to be ill? I’m not really up for that.

R doesn’t seem to think it’s an imaginary condition though. Apparently Rheumatologists believe in it and treat it. We talked about how well it fit with many of my symptoms. Apparently many people who suffer from RA also suffer from fibromyalgia. Apparently arthritis patients who develop fibromyalgia tend to experience pain in the joints that are affected by their arthritis, who knew? This diagnosis would also explain the fact that my pelvis has continued to case me pain despite the fact that it is now structurally sound.

The more I read about it now the more boxes I can tick. I have soooooo many of these symptoms, predisposing factors, possible causal factors. It’s mind blowing.

She has prescribed a new medication that is supposed to change the electrical activity in my nerves and in my brain. If it works I will be able to stop having my other pain medication, which would be fantastic. Not just fantastic, it would be monumental.

It may or may not help to reduce my ongoing muscle spasms (also a symptom of fibromyalgia) but if it doesn’t there are some medications we can try for that too.

I don’t want to have fibromyalgia. I don’t know why my body has decided I could do with a bit of extra pain but I am feeling pretty optimistic tonight. If this medication works it could change everything. I might just be able to start living my life again. I am having fantasies about being able to exercise*. Something I used to do but haven’t been able to do properly for years. I am feeling that there might just be a light at the end of the tunnel and THAT would be amazing.

I might always cringe internally at the label of fibromyalgia but then again, if this works and I get my life back, I might not care at all.

* I can’t quite believe that I wrote that sentence**.

** I also can’t believe that it’s true. Surely it’s not normal to long for exercise. That’s just wrong.