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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.

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.

Ponies, meltdowns, zombies and meh

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Gecko’s birthday went well. Our friends came and made me relax a bit and everyone got along and also left at reasonable times so it was quite the success. It has taken me all friggin’ week to recover. This is the first evening that I’ve felt able to type a post and I’ll probably pay for it tomorrow. Whatever, it’s to be expected given that my body doesn’t know the meaning of the word co-operative.

But what, I hear you ask, of the pony cake? I’m sure everyone’s just been dying to see how it went. I have to say, it can be a tricky thing to explain to someone else that those two mixing bowls and one loaf tin will make an awesome pony. Beefy couldn’t picture it (or more to the point had a waaaay better way of doing it) but as I am the cake person in these here parts it really didn’t matter that he lacked any vision whatsoever. Naturally, I was right.

So, ta da!

Ah yes, these shots were taken on my phone and are a wee bit blurry. Trust me though, Pinky Pie looks best with a bit of soft focus. If you cover the eyes, which Beefy may have had to physically prevent me from retouching as guests were arriving, I think her overall body shape bears a reasonable resemblance to a pony toy.

I was quite pleased with myself. It’s taken fifteen years and four children but I am getting to the point where I wouldn’t be too ashamed to invite those other than close friends and family to one of my cake’s kids’ birthday parties. Which is a good thing because Skunky is turning 6 really soon and he wants a few friends at his party.

Oh, yeah, can I just have a bit of a moan please? Skunky and I were discussing cake ideas and we were talking things like whale sharks and narwhals (his favourite things) and I was happy. Then he decided maybe he should have a zombie cake (let’s not even discuss where he got that idea from). I just about had him convinced that the fish and whales would be a more suitable theme if he’s having school friends when in comes Beefy and tells him that a zombie cake would be awesome, thereby undoing all of my good work.

The man has no clue, seriously. Firstly, I don’t want to make a zombie cake*, and secondly, I stand by my statement that it might not be appropriate for school friends. I know that it’s likely that most of his friends would love it but I also know that some parents might not think it’s right for a 6-year-old’s birthday. Also thirdly, just grrraaaahh.

Beefy’s not one for caring what people think but I’m just not willing to host a zombie themed party for a six-year-old. It’s going to be so much fun convincing him that whale sharks are way cooler than zombies. The likely outcome is that he’ll choose the zombie cake over the school friends, which will leave me feeling guilty. Again, grrrrrraaaahh.

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I know that everyone talks about the terrible twos and, well, Gecko has always had a knack for combining unbearable sweetness and cute with tantrums that are terrible to behold but what about three? I’m trying to cut her some slack because she was so ill with the flu recently but our days this week have just been one long meltdown after the other.

She gets all caught up about tiny things like, for example, flushing the toilet herself and if you make an error she has to reenact the whole sequence of events. Today she had to sit on the toilet again and became hysterical when she couldn’t manage another poo. If you have helped her into her jumper she might become enraged at the last second and undress herself completely, screaming and crying all the while, and then redo her whole outfit. She is definitely the most pernickety and volatile of all our children and three doesn’t seem to agree with her. Poor Beefy did something wrong while putting her in her car seat yesterday and had to endure screaming throughout the entire school pickup. He thinks it’s funny and didn’t mind the stares but she completely exhausts me. I keep chanting, “it’s a phase, it’s a phase” under my breath as  I step over her writhing body to get to the fridge.

If it isn’t enough that I have to deal with a full-blown meltdown machine, there’s the teenager. He’s really lucky that I try to respect his privacy here because there are some things that would make for killer blog posts. Honestly, he’s fifteen and a half, I’m sure you can imagine.

Rhubarb’s getting to the pointy end of his schooling now and the school are making a huge effort to impress upon all of the kids that study is not to be taken lightly any more. He’s lucky to be the kind of kid who can put in very little effort and pull reasonable grades but his relaxed attitude has got him into some trouble recently. His home group teacher tolerates no lateness at all. I agree with her but I also think it’s a bit excessive to be on the phone with me fifteen minutes after school starts to find out where he is. Anyway, he’s getting there with the punctuality thing but it’s taking a lot of discussion to get through to him that he has to take things really seriously now.

It’s only a few weeks until he’ll be choosing his subjects for next year and they in turn dictate which uni courses he’ll be able to choose. He’s had to talk his math’s teacher into recommending him for “good maths”, she was going to decline on the basis that he’s not serious enough until she reviewed his test scores and saw that he does really well despite his apparent lack of dedication. He had to promise her that he’ll take it seriously.  It’s heavy. Cue Moronic Ex-Husband’s interference.

MEH wants to take both kids on a skiing trip two weeks into term three. Poss has declined but Rhubarb loves to ski and is really excited. We had a nasty row about it last week. I just think it’s not a great idea for him to miss a week of school. MEH wouldn’t have a clue what’s happening at school, he’s pretty much as uninvolved in the kids’ lives as they come so it hasn’t even occurred to him that it might be an issue. So, I’ve got Rhu with his heart set on going, MEH with no clue and Beefy who thinks it’s probably okay and it’ll be Rhu’s last chance to go before school’s finished. I understand that school holidays will be too expensive but I’m just sure that they’ll be piling on the work at that stage. I’m the one who’ll have to arrange it with the school and make sure he keeps up to date. Am I just being a difficult old lady here?

Please tell me it’s not just me that thinks this is a crazy idea?

I am trying to be reasonable. It’s possible that I find it slightly annoying that Mr “my income is way less than $20,000 a year so that I don’t have to pay proper child support” is having trouble choosing which new car to take on his annual ski trip. I really am trying to not let that colour my judgement but I guess I’m struggling. We could take what he’s spending on this trip and use it to buy things the kids actually need. It makes me grumpy. Before anyone mentions making him pay more. I just want to add that a) it would be very difficult as he is self-employed and works in an industry that sees him paid mostly in cash  and b) there are several other reasons why this isn’t the best option for us. Doesn’t stop me from being grumpy about it though.

So, please give me some perspective. All of my friends and family will agree with me because they have a lot of experience with MEH that colours their judgement so unbiased opinions would be most welcome.

I need to find a way to post more often because every time I post now it ends up being uber, mammoth, mega ramble post. Sorry about that.

*Actually, that’s not true, I’d love to try making a zombie cake but not for the 6-year-old’s school friends, I think I’ll have to try it for Beefy now.

What to do, what to do

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Bizarre happenings today my bloggy friends.

Had a good appointment with my GP who was suitably disgusted with the way I was treated at the PMU. I think we both regret having any involvement with them now but hindsight is a wonderful thing. Who knew that a hospital unit that is apparently dedicated to helping people manage chronic pain is actually much more interested in labelling them as drug addicts and declaring them mentally ill.

My GP agrees that we will NOT go forward with their recommendation that I be referred to the hospital psychiatric unit so that I can start anti-depressants and come under the ongoing care of a psychiatrist. She agrees that this is a crock of shit and potentially leaves me open to future discrimination and bad treatment by unscrupulous medicos.  She agreess that I am suffering from reactive depression CAUSED BY MY CHRONIC PAIN and not an ongoing mental illness, which makes me imagine I am having pain.

We agreed that it would be ideal for me to see a psychologist again to help me with coping strategies for my pain but she feels very nervous about creating a mental health plan for me (this means Medicare pays) because she says that once it’s out there in the system it could be used to support a claim of my having an ongoing mental illness, when of course I do not.

She informed me that the PMU have asked her to wean me off of opiate pain relievers (because of course I’m a drug addict) despite the fact that I have now been taking them again for the astounding period of two weeks after nearly 3 months of nothing. She views this as a total crock of shit also.

She was horrified by their implication that my Rheum had been negligent or misguided in her treatment of me. She knows R and has other patients who see her. My GP reaffirmed that R has an excellent reputation and the notion that she would prescribe unnecessary medication to a patient (who might not have arthritis at all) is ludicrous.

They advised her that they will be seeking to review my progress in three-four months. She advised me that I should not submit myself for review. She is basically hoping that if we ignore them they will go away. I think she feels a bit to blame for referring me to a service that she thought might help me but instead has put me at risk of being very badly mistreated.

I feel very relieved that I have a GP that is totally on my side in this issue. I feel reassured that she does in fact trust and know me to some extent now and will do all that she can to prevent me from being mistreated.

THEN

This afternoon an envelope arrived in the mail from the hospital. I have been booked in for a whole body nuclear bone scan on FRIDAY. Now, anyone who knows anything about public hospitals knows that the waiting lists for these things can be months, if not years long.

I have no idea who has booked me in for this test. It could be R but she hasn’t called to say that she did it and when I spoke to her about it last week she said she’d be happy to organise it but gave me no indication that there was any urgency. The date that the scan was booked WAS the same day that I spoke with her so I am hoping it was her.

If the PMU has booked this scan and they do not find results supporting my diagnosis of arthritis (which is entirely possible because the whole point of treating the arthritis is to avoid bone damage/change such as would be detected with this scan) then it could be used as further justification for denying me pain medication or to support the idea that I have nothing physiologically wrong with me and my pain is all in my mind.

I don’t mind telling you people that I am a little apprehensive. If R has ordered it then all well and good but if the PMU has ordered it what do I do?

I think I am going to call R’s rooms tomorrow and ask for confirmation that she is the one who has ordered the scan. I am seeing GP again tomorrow for a steroid injection in my arse (another attempt to force my body to stop attacking itself in the frantic way it appears to be at the moment). Maybe GP will have some thoughts.

For the moment I am nervous.

It shouldn’t be this way. I shouldn’t have to play strategy games so that I receive appropriate care. It’s just all so crazy.

Oddly though, my state of mind has improved dramatically, at least for now. I think all of the support I have had from you, dear readers, coupled with the reassurances from R and GP have helped immensely.

I can’t help feeling though that this is just not how it should be. Doctors making patients jump through endless hoops.

This is not how it should be at all.

Suck on this bitches

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First of all, I would like to thank everyone who commented and emailed me after my last post.

When I wrote the first of the two posts I was so emotionally distressed that I really wasn’t able to think clearly. The next morning, when I published the second post (which was really pretty much the same) I at least knew that I was happy to stand by my words in the light of day. Does that make sense?

It made such a difference to hear from you all. I felt so supported and cared for. The validation you all gave me meant more to me than you can imagine. I am so grateful to be a part of such a caring community.

I have had a much, much better day today.

First thing this morning my Rheum (I’m calling her R from here on in) called me to check how I was going. We had a bit of a discussion about how serious this flare has been and she gave me some great insights.

During this flare my back/pelvis has become dramatically inflamed and much more painful than it has been in recent months. I had interpreted this to mean that my back/pelvis is indeed arthritic despite the fact that we had previously ruled this out. Today she explained that the muscles surrounding my bulging lumbar discs become even more inflamed when my arthritis is active because my body is in a kind of inflammatory overdrive. I am really relieved to finally have a clear explanation about this. This is the first time that anyone has ever explained what’s going on down there in a way that fits with my experiences. I think in the past she just assumed that I was able to join the dots, which clearly I wasn’t.

I also thought it was really important that I discuss the Pain Management Unit (PMU) findings with her as they had made some implications about her treatment of me that were inappropriate, confusing and worrying.

She explained that when I first went to see her it was difficult to make a definitive diagnosis as I had both the back/pelvis issue causing me a lot of pain and some initially quite mild arthritis, mainly in my hands. These two things, had they both been rheumatic conditions, would have meant two very different diagnoses and therefore pinpointing a single diagnosis was a tricky business. She let me know that over the time she has seen me, my arthritis has been quite aggressive and worsened dramatically to encompass many more joints. She said that my arthritis could no longer be considered mild at all and that since we have ruled out spinal involvement she would quite happily label my disease Rheumatoid Arthritis. It might sound strange to be so happy over such a diagnosis but it feels really empowering to know that I can trot those words out whenever I am questioned by a doubting doctor.

R’s clarification of her position on my arthritis also puts to bed the doubts that the PMU had about my treatment regime. I am taking some very serious and strong arthritis medication because I have some very serious and aggressive arthritis. Simple as that.

Suck on that bitches.

R was also able to clarify that, while there has been a change in my white cell count as a result of my medication, it is in no way to a level that could be dangerous to me.

Finally, in addressing the PMU’s suggestion that I undergo some new testing, R clarified that some of the testing was impossible to do when we first met because I was still breastfeeding (massive doses of radiation from nuclear bone scan anyone?) and that the other tests they were asking for were specific to a different type of arthritis (of the spine) that we have already proven I don’t have.

Again, suck on that bitches.

It’s amazing how what has probably been a slight miscommunication between R and I could lead to me being piled with that gigantic load of horse shit from the PMU. I have always known that my arthritis is real but perhaps, if I had been armed with some of the knowledge I now have, things could have gone differently.

R was quite perturbed at their questioning of my treatment regime. She pointed out that she is not a pain management specialist and as such would not presume to criticise their recommendations in that area directly to a patient. For them to criticise the treatment and diagnosis of arthritis when they appear to know very little about either was perhaps a touch unprofessional. She may also have mentioned something about some “interesting” personalities within the PMU (the PMU is located in a hospital that she also works in some days each week).

She was being very polite.

So again, thank you my friends, the confidence boost that you’ve given me has helped me get some really important answers today and I’m not going to let it stop here.

I will keep trying.

I will keep hoping.

I think this means I’m blogging again

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Well, where to start. It was a hard thing, to take down my other blog, but then again, I had dropped out of blogging completely so there was not a lot to be gained by throwing money at hosting fees every month.

At the time I didn’t know if I would start a new blog or just let it die. I’m not ready for a big commitment. I need to take it slow but I miss all of my friends very much and I figured I might as well give it a burl.

In the interest of some sort of continuity, here are some things that have happened since I was last blogging:

Arthritis bad, bad, bad. It took a very long time to find the correct combination of toxic chemicals to stop my immune system from attacking me constantly. That little struggle just sucked the life out of me for a time. I literally could not muster up the energy to make a blog post. I didn’t even read other people’s blogs really. I just…. stopped. It didn’t help that I also pretty much stopped speaking to everyone in real life. I was caught in a loop of isolation and anxiety that just kept dragging at me. It felt as though communicating with others (outside of my immediate family) might make me shatter into little pieces.

 

I had a pretty scary health scare. Former readers will know that I have struggled with my bastard of a pelvis for some time. In the course of investigations as to what the flipping hell is wrong with it we discovered two things.

1- There appears to be nothing wrong with the pelvis, it has recovered from the problems it did have. There are some bulgey discs in my lower spine that are likely causing the continuing pain.

2- There was a largish cyst on my right ovary. Not unusual for me as I have PCOS, however the MRI report did me the delightful favour of labelling the cyst “suspicious”. Mmmm, stressful.

Cue months of trying to get in to see a gynae. Seeing one and having him be an utter misogynist – I mean the man actually said “So you’ve got a cyst, what do you want me to do about it?” before telling me that I needed a hysterectomy and if I agreed to one he would operate within 3 months instead of having me wait 12 months to have my cyst dealt with.

He’s lucky he made it out of the appointment alive.

I finally ended up in so much pain from it that I ended up in the ER at the women’s hospital.

They admitted me immediately and operated the next day. Funny that.

I found out today (7wks post surgery) that the cyst was about twice the size that an ultrasound the day of surgery had indicated. I was also told today that I was very lucky that it was dealt with at that time. It could have been very bad. It was very large.

It was also benign!  Although I was pretty sure that it was, I couldn’t help worrying about it just a tiny smidge. Phew.

About  a week and a half ago I began my very first major arthritis flare. I am in the midst of a pretty awful time. The rheum has put me on a short course of steroids to try and bring my unruly body back into line but that only began yesterday so I am still a bit of a mess unfortunately. I had been so well that I had completely forgotten how horrible this thing can be, although to be honest I don’t think it’s ever been this bad before. Bastard.

My darling boy Skunky (formerly Pudding) started school. Just the one lonely kidlet at home now. How sad. He loves school very much and it makes me both swell with pride and have to stifle a tear to think of how grown up he is.

There are many more things that have happened of course, but if I am going to keep on with this thing I think I need to reserve some material.

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.