Still ugh

I thought that things were improving over the weekend. I made it through most of Saturday with no problems and while Sunday wasn’t as good, it wasn’t as bad as it had been during the week. Right up until I was kept awake for two hours on Sunday night with cramping and, er, other issues.

I had physio yesterday and, as the physio’s office is round the corner from my office, I elected to go to work afterwards. My doctor’s office is just across the road from my building so it was a good plan. Apart from spending most of the day in the bathroom and not keeping any of my food in my stomach. Argh!

The physio was disappointed that I’d been ill and thus unable to work on my core much. As working on my core tends to set off cramping, I’ve not been getting very far with my exercises. He wants me to try harder this week. Yay?

My GP left the practice in March of last year. At the time, this didn’t seem like the end of the world because I was fine, nothing was going on and the practice staff assured me that she was being replaced ASAP. My new GP starts on 7th February. Argh. So I’ve been relying on duty doctors at the walk-in clinic at my practice, which isn’t good when you’ve got active issues.

Yesterday I managed to get lucky yet again, by seeing the doctor who was leaving the practice at the end of the day and thus was reluctant to do anything that would require paperwork. Like referring me to a rheumatologist. That will be my battle when the new GP starts. The duty doc said that it will take months, maybe years, to get me a rheumy so what is a few extra weeks in the grand scheme of things?

I think she may be missing the point, but there’s nothing that I can do about it apart from trying to get an appointment with my new GP the moment he arrives.

The big reasons that I was there was to discuss my meds and discuss my stomach issues. We got nowhere on the meds, her suggestions being counter-intuitive in light of what’s causing the pain and my other issues, and she was rather less than helpful on the stomach thing.

She did, reluctantly, fill out a requisition for some lovely invasive testing because I’ve been having issues on and off for years and it may be a good idea to rule out some form of colitis. She also signed the requisition for some bloodwork to check for anaemia. I’m getting tested for a whole bunch of things, in fact, so it’s fasting bloodwork. Somehow I have to get myself to the doctor’s office tomorrow morning having consumed nothing, including my painkillers, since tonight’s supper. This may be interesting.

For my current problems, she suggested peppermint tea and a trip to the emerg if things don’t resolve in a week or so. Argh.

This morning I’ve been having flashing lights, dizziness and extreme exhaustion which I’m reasonably sure are due to my inability to process food properly for a week. I’m giving it another couple of days before I think about the ER. Just not quite sure how to drive to get my bloodwork done tomorrow if I’m still like this…

On the up side, this is a great weight loss program. I didn’t need to lose weight, but I’m going to look so sleek and slim by the time this is over. That’s got to be a bonus, right?


Since Tuesday evening, my digestive tract has been in full-on rebellion. Argh. I made it to physio on Wednesday, went to work afterwards and then faced with the prospect of Eating Lunch made a tactical withdrawal and went home.

Yesterday I didn’t even bother with the work thing.

By the evening, I was feeling quite a lot better and rather hungry. Supper treated me well and I was feeling confident that I was better.

I decided to work from home today because I was feeling wobbly and light headed still, so being on the roads with a storm on its way in seemed like a silly idea. Breakfast seemed OK…until about an hour later when breakfast suddenly seemed like a stupid plan.


Problem is, there is a variety of possible causes:

1) Exhaustion from sustained back pain and lack of sleep making my digestive tract partially shut down
2) My meds finally upsetting my stomach enough to cause issues
3) Exhaustion from blah blah causing an IBS flare (although I don’t think it’s ‘true’ IBS that I have)
4) An actual stomach bug

I have to admit, 4 seems the least likely. Sleeping for most of Wednesday afternoon and a lot of Thursday has made my back even more painful than normal and having to eat in order to take my meds is not making me feel happy.

I’d be able to cope with either my stomach or my back, but both together is just making life suck. Also, the not feeling safe to drive thing means that today’s planned trip to the doctor to discuss meds and insist on investigations and referrals has been postponed to Monday.

The bright spot is that the girls think it’s lovely having Mummy home all day. I just have to get through their little fluffy brains that standing on Mummy’s tummy is not a good plan.

Random Tuesday stuff

Many random things:

– BossBoss has been feeling so guilty about watching me be in pain all day that he organised an ergonomic assessment for me. The occupational therapist came in today and confirmed that my workstation is pretty much perfect (I had one of these around eighteen months ago) so there isn’t much she can recommend. BossBoss will probably still feel guilty about being powerless to help me, but hopefully this will let him know that he’s doing everything he can.

– The OT told me that it’s totally appropriate to start insisting on investigations and referrals to a rheumatologist because I should not have to be in this much pain πŸ™‚ She also made me feel better about insisting on ruling out inflammatory arthritis because if that’s what is wrong, there are excellent drugs out there that will help me. Again, I’m far too young to just live like this. It was nice to get that validation.

– Yesterday I had monster Greek food cravings.

– I ate my healthy wholewheat pasta with lentil sauce anyway.

– I’m planning to drag some knitters to the Greek place for supper soon. I dream about the kolokithia (fried zucchini) and would mug someone for dolmades.

– In the midst of my terrible cravings, I got desperate and started Googling for some fried zucchini recipes. I found some oven baked ‘fried’ zucchini recipes and one of them is going to get tried this weekend. Before anyone asks why I can’t make them tonight, there is no zucchini in my kitchen. Argh!

– The pizza place just round the corner from my office sells fried zucchini sticks. It’s so tempting sometimes to just go over there and indulge. Canada is an evil place for introducing me to these delights.

– The water company sent me an overdue notice for a bill that I’d paid weeks ago. For once, I got mad rather than scared and immediately commenced with the telephone calls. Twenty-four hours later, they’ve found the payment and it’s all sorted out. I feel so productive! And brave! And proud of myself!

– It would be really bad to plan on experimenting with the fried zucchini and some baked shrimp toast (the closest I’ll get to prawn toast here) on Saturday, wouldn’t it? There must be a law somewhere about not eating an entire meal of appetizers. It just sounds so awesome and yummy…

– I’m trying to comfort myself with thoughts that at least I don’t crave sweet stuff. It’s savouries all the way. I suspect this is no healthier…

Not quite the snowpocalypse they were predicting

Yesterday we were supposed to get a snowpocalypse.

I left work at lunch to spend the afternoon working from home. It’s a good thing that I did because the snow and winds were just picking up as I left and by the time everyone was trying to come home, it was a nightmare out there.

Thing is, the worst of it died down much earlier than expected and it was rain-snow mix stuff at my place from around 5pm. It still made a mess, but nothing like as bad as expected.

I still lost power for the evening, though. Unfortunately before I’d cooked the pizza that was going to be my special treat last night and it was pretty late when the power came back. Damn you, NSP!

*shakes tiny fist*

This morning things are slippery and horrid outside. My driveway has been cleared a bit (not by my) but not well and the snow is coming down sufficiently to make me nervous.

I have also been banned from snow shovelling. As my back kept me awake most of the night, I’m not going to argue with that. Hopefully I can get my cousin out later today to do something about my drive. If he’s not around, I’ll see which friend can lend me their husband.

I’m very much hoping to be cleared out and have good roads tonight so that I can get to knit nigh, but if I’m not then an evening with pizza and DVDs wouldn’t be bad either.

This winter is going to involve a lot of me going nowhere if I’m banned from snow shovelling for long. Argh.

A Year in Review (knitting, fandom and RL edition)

This has been one of those years that wasn’t specifically awful and wasn’t specifically wonderful either. There were some good high points, some nasty low points and the end of the year hasn’t been what I wanted. Overall, I’m hoping that the memories of the high points will overwhelm the memories of the low points.


EDS and asthma

I really need to register at PubMed so that I can read some of the articles and journal entries because there is a fair bit of interesting research being done on the various forms of EDS. This one had me particularly interested:

Asthma and airways collapse in two heritable disorders of connective tissue.

From the abstract, it appears that people with EDS III and HMS have a much higher incidence of respiratory disorders such as asthma. No big surprise to me – I think that even the NHS leaflet now says something along those lines.

The interesting bit (and the reason that I want to read the full article) is the hint that EDS-ers also have a higher than normal lung volume despite the resipiratory issues. And reduced exercise tolerance.

My peak flow results (when my asthma is OK) always boggles my doctors because it’s so high. Nearly double my mother’s, in fact. This also makes it hard for them to grasp the severity of an attack because I’ll be choking and struggling to breathe with peak flow results that aren’t as low as many asthma patients at that stage. The ER doc who saw me in my big, scary attack a few years ago only started to get concerned and reach for the steroids and nebuliser when mum told him (I couldn’t talk anymore) what my ‘normal’ results are. Two nebulisers and a big dose of prednisone later…

I was only just starting to get back to what my mother’s ‘normal’ peak flow is. Heh.

More than half my attacks have been triggered by exercise. The rest happened when I had viral illnesses and when my breathing gets bad, I know that I’m probably coming down with something. Unless there has been a trastic weather change, which is my other trigger.

It’s always been difficult to track some of this because my asthma (and my mum’s) behaves quite differently from my sister’s and my paternal cousins’. They had asthma as children, grew out of it in their teens and had environmental triggers in addition to the traditional viral stuff. I grew into mine as a teenager, have no environmental triggers (apart from barometric pressure) and used to need to take my inhalers before I did any exercise. Now I just try to avoid the forms of exercise that my lungs dislike πŸ™‚ My mum’s history is similar.

If my high lung volume is related to the EDS then my asthma and its odd behaviour would finally make sense – I really want to read that article. And also the one on hand and wrist involvement with EDS. And the one discussing whether EDS-ers must always have X-rays to disagnose dislocations (hello radiation poisoning). And maybe the one discusing obstetric complications for Hypermobile EDS.Β  But mostly this asthma one so that if I have another hospitalising attackΒ  I can explain to the ER doc why my peak flow is so high and they can be aware of it the next time they see another patient like me. Or at least, I’ll explain when I can breathe enough to actually talk to someone.

Sometimes I wonder whether EDS-ers should have medic-alert bracelets, then I decide that we have so many potential oddities that it would take the ER docs longer to read the info than to treat us.

So, about that shoulder

Saw my GP today about my stupid shoulder. She thinks that I dislocated the scapula both times (I was right!) and is sending me for an X-ray to see whether there is anything going on there. We’ll see where we go from there – she wanted to investigate properly before referring me anywhere to get a clear picture of what’s happening first. The X-ray will get sent on to Dr. O the rheumy as well to keep her in the loop.

I’m starting to feel better about Dr. M.

The pain on breathing had her concerned due so she listened to my chest and then needed reassurance that my heart is fine and the last echo proved it despite my murmur. She concurs with me that the pain is coming from muscle damage due to the dislocations.

The nice part was that she remembered that I have EDS and felt that investigations were still definitely needed. Also she respected that I know what I’m talking about when I say the pain was pretty darned bad. Er, I forgot to get anything for the pain but then I do feel weird about about asking for ‘just in case’ meds. She even asked me what I normally do for dislocations and trusted me that this was not a regular shoulder dislocation. Hooray!

So, overall it was a positive visit and I’ll be going over to the hospital shortly to queue for my X-ray. Then we’ll see what we want to do. It’s possible that I’ll be getting an early appointment with Dr. O although Dr. M was also discussing getting me an assessment with sports medicine to see whether there’s anything they can do to strengthen that shoulder. Bridges to cross later and all that.

Hey, ho, it’s off to the hospital for me. My first X-ray of the year – I made it all the way to April this time!

Sleep now?

I picked up a copy of the season opener for Lewis and watched it last night. It’s really quite good, isn’t it? Why did no one tell me that it’s quite good?

Also, House was rather awesome πŸ™‚

Note to self: substituting a fair bit of the cheddar for stilton in cauliflower cheese is a very good idea. Nom. However, about half the quantity of cauliflower cheese would have been better. How did it multiply? I’m sure I used the same quantities of everything that I normally do, and yet I had about double the normal amount. It was quite excellent but, er, rather more filling than it should have been and I’m not sure how good re-heated cauliflower cheese would have been.

Also, please to be remembering that preparing food with sore shoulder is not easy.

Tonight’s veggie curry has been replaced with beef stroganoff because I had some in the freezer and thus it simply requires reheating, a spoonful of sour cream added and some noodles cooked. Yes, lazy, but I’m not feeling like spending time cooking today πŸ™‚

And now I’m going to whine for a while…


OK, I admit defeat (Robin Hood spoilers included)

Whatever has gone wrong with my shoulder obviously needs looking at by a doctor, I admit it. The dratted thing went out again yesterday morning at around 10.45am (I know because that’s when I left for church and it went from fine to ouch in the space of ten seconds) and it’s still very painful today. I’m managing it better this time – mobilisation and heat packs – so it’s not yet reached crippling stage, but it’s bloody painful and I definitely cannot drive now.


I’m also tired because there was no comfortable position to sleep in last night and therefore I haven’t had much sleep. As soon as the office opens, I’m calling to get an appointment with my doctor. I’ll work out how to get there when I have an appointment. She’ll probably tell me to see my specialist, but at least I’ll know whether it’s worth bothering the specialist then and she might be able to give me something to take the edge off and get some sleep when it goes out.

Hey, ho, live is always interesting with hypermobility!

The weekend was productive and fun, despite not getting to see my aunt on Saturday. The stuffed mushrooms need some experimentation to get them right, but I have a mushroom left over so I think that will be Wednesday’s supper πŸ™‚ I think a bit less cooking time and a bit more stilton might be the way to go. Adding a bit of sour cream to the juices that cook out an drizzling that over the mushrooms is definitely a fine plan. Recipe will be posted when I’ve got it right πŸ™‚

I got 2,000 words done on my current project, which makes me very happy, and there was also some rather excellent weekend TV.

Update on shoulder/back situation

I believe that I have identified the source of all that pain I had Thursday evening/Friday.

Sometime during Wednesday night I dislocated my left shoulder blade, trapping a nerve and straining the muscles and tendons in the area.

How did I know this? Well, on Friday afternoon I was trying to stretch and mobilise the shoulder so that I didn’t have cramped, spasming muscles to add to the problem and there was this moment where the shoulder blade made a nasty klunk-crunch sound and some of the pain started to ease off.

Yeah, I was walking around with a dislocation for thirty-six hours. No wonder it was so painful! And, um, it isn’t the first time that I’ve dislocated things in my sleep.

Anyway, there is still some pain under and around the shoulder blade when move in certain ways or when I don’t move and things stiffen up (I suspect the nerve is bruised and things were strained by being out of place for so long), but I’m much more comfortable than I was and I even managed to get out and about a bit yesterday, although I couldn’t get my winter tires changed because I couldn’t lift my all-seasons into the car. That has been re-scheduled for two weeks time.

I gave in and signed off about half an hour after making my LJ post on Friday because it had got too painful. In retrospect, it was probably stupid to try to work that day. I am comforting myself with the knowledge that even if I’d gone to the doctor there wasn’t much should could have done other than send me to a physio for manipulation or possibly tell me to see my specialist. And as I reset everything Friday afternoon, it would have been a wasted trip πŸ™‚

Today has been a beautiful day. I actually went out without my big winter coat and took a walk on the boardwalk after church, because it was so beautiful and I love the smell of the sea. It makes up for a sucky Friday and almost makes up for missing my knitting group on Thursday. It’s going to rain for the next couple of days, but it’s not snow and that continues to make me happy πŸ™‚

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