Oh, right, I’m supposed to update this thing sometimes…

I’ve been rather quiet on this blog lately. I’m not quite sure why, although I think it’s got a lot do with being tired and a bit overwhelmed and therefore not having things to post that aren’t medical and health related.

My trip to England was lovely and the convention was fantastic. It returned me refreshed, renewed and enthusastic for all the things that I’d been not doing or thinking about while I was sick. I read some excellent, amazing books (I’m on a good book roll right now) and was feeling thoroughly ready to tackle the world again.

Then I got the news from my specialist that my colitis was not in remission and seemed to be prednisone dependent. As my symptoms (the bleeding most noticably) had returned when we tried to taper down the pred, I had to concurr. This meant that our plan to taper off the pred and introduce a nice, cheap, easy-on-the body maintenance drug was not going to work. Yup, pretty devestating news. I’m now waiting to hear whether my insurance company will fund an insanely expensive biological immuno-suppressant called Humira, which has the advantage of kicking in fairly quickly, or whether I’ll have to use the cheaper, non-biological drug azathioprine, which takes several months to reach theraputic levels. In the meantime, we’ve bumped the prednisone back to high levels and I’m dealing with the side-effects (acne, gastric reflux, yay) while also dealing with the anemia from my heamoglobin dropping due to bleeding.

Mostly, this has involved insane levels of exhaustion and me turning into a crazy person obssessed with everything I eat in case that’s the thing that’s killing me and OMG what am I doing to myself?

My specialist keeps reassuring me that this is nothing I’ve done to myself, this is not my fault, and I could be not eating anything at all and I’d still have active colitis. My disease is severe and extensive, but it’s not something that I can fix by diet or by not eating or by turning into a crazy obssessed lunatic.

He may not have come out and said the bit about being a crazy obssessed lunatic. He’s far too nice for that. But it was certainly something he would have said if he wasn’t so lovely.

On Friday, I had a slight existential crisis in the middle of the grocery store. I was exhausted, to the state of being a burnt out zombie, and the exhaustion had been doing funny things to my brain all day. I was depressed, feeling rather desparing and defeated, and it all seemed to fall on me in the middle of the grocery store.

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A slightly dramatic few weeks

So, when I last wrote on this blog it was the day after seeing the duty doctor at my medical practice and I was feeling really rough. Her prescription of peppermint tea was not helping and I was starting to get very dizzy with flashing lights and sudden unexpected naps. I had been putting all of this down to my ‘stomach bug’ and was planning to get my fasting bloodwork done the next day. There is a reason that there has been no update since – and it’s a little dramatic.

On the day of my bloodwork (January 26th) I was feeling so tired, dizzy and breathless that I could barely stand long enough to dry my hair. It took me forty minutes to achieve that and I realised then that something might be wrong. My lovely cousin was a star and took me out to get my blood done, despite having only just finished a night shift, because I knew that I wasn’t safe to drive. Afterwards I went home and worked, reclining on the sofa a lot, because I am slightly crazy and still couldn’t quite believe that I was actually ill.

A few hours later I got a call from my doctor’s office. My haemoglobin was dangerously low and I needed to get myself to the ER immediately. I called Mum to cancel our Wednesday night Skype chat, called my cousin for a lift and checked myself into the ER.

The nurses who treated me that night told me they had never had a patient my age, with those results, able to walk into the ER. I should not have been conscious, never mind ambulatory, and if I had passed out at home my blood levels were so low that I would have been dead in a day or two. The tummy symptoms that the doctor had dismissed a couple of days before were actually symptoms of a large GI bleed and I was dying. The only reason that I hadn’t passed out was because I had lost a lot the blood gradually over several months (apart from the big loss in the final week) and so I had acclimated as my levels dropped. Thankfully the ER staff were able to pump me full of blood and saline (when they found viable veins!) and after twenty hours I was released on condition that I went straight to see a GI specialist that they had found for me.

He examined me, said that it was unlikely that I had IBS, and got me started on tests to figure out the real problem.

By the time I got home that day, my Mum had booked tickets and was due to fly in a couple of days later to look after me. I felt so much better thanks to all the transfusions that I couldn’t really understand why everyone was so worried, although when my tummy troubles returned at super-strength a day later it was lovely to have Mum around to look after me.

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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?

Ugh

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.

Argh.

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…

Some yoga ramblings

Week four of my intro to yoga course and I’m loving it more each week. It’s hard work (sweaty, needing to breathe a bit harder type of hard) but also very relaxing and I come out of the class feeling great. I’m already starting to notice that I’ve got a tiny bit more strength in some areas (particularly my arms and shoulders) and it seems that my core strength wasn’t as bad as I’ve always thought.

Seems like the exercises that the physios gave did some good, at least πŸ˜€

It helps that my teacher is really great, encouraging us all and making the class fun. I’m a bit sad that she doesn’t teach the next class level, although she’s the studio owner so I’m sure that everyone who works there will be up to her standards of being awesome.

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Flu shot thoughts

I’ve been thinking about the flu vaccine. Specifically, the priority group expanded a couple of weeks ago to include those with chronic lung disease such as asthma, meaning that I’m now allowed to go and get my dose.

Actually, I really should go and get a script for my inhalers because I’m not sure my Becotide has anything left in the canister and my Turbutaline expires next month. If I get sick, I’m really going to need those because this time there is nobody to get me to a hospital if I have a major attack and I know that I’ll feel daft for calling an ambulance.

Anyway, the important thing is that I’ve been thinking about the H1N1 vaccine. I know that I should get it. I know that it’s safe (enough people have been guinea pigs now to convince me that it’s as safe as the seasonal vaccine). I’m in the at risk group.

Problem is, I don’t feel like I deserve it yet. My asthma is relatively mild. I’ve only needed hospital treatment once with it. There are other people out there at far more risk than I am and they should get their shot ahead of me.

My immune system is crap, I know this, but it doesn’t actually make it any easier to put my head up and say “please, sir, can I have my shot?”. We’ve spent months being told we should get the shot but it’s important that the most vulnerable get it first. Maybe that’s why I now feel so conflicted.

During the course of writing this, I’ve actually taken the plunge and booked myself in to get the shot. It helps that I’m now hearing that clinics are empty and doses are being thrown away because people aren’t getting their shots. I still feel guilty for going, because my asthma is mild and there are people out there in much more need than me, but maybe I need to get over that feeling. After all, I know that I’ll get pretty sick if I get the flu and there are already two people in my department out sick with it.

Shouldn’t that be reason enough for me to feel OK about getting my shots? It may take a bit of persuading to get my emotional brain to meet up with my logical brain on this one.

There are good reasons why I nearly cried at work today

Today has been a Bad Day.

My back has been hurting a fair bit for the last couple of weeks and I’ve been waking up a lot through the night, finding myself lying flat on my back which only makes it worse. I’m suspecting that part of the reason for my back being so sore and stiff when I first get up is the sleep position issue. Last night I tried sleeping with a cushion to prop me a bit and another to cuddle-ish and it seemed to work. Or at least, I slept pretty well and wasn’t lying on my back or front when I woke up! And wasn’t *quite* as stiff as I’d been other mornings.

Unfortunately, shortly after work I started to get really bad stomach cramps and nausea, which didn’t make me feel amazing and my back then kicked in. Yay. Took several hours with herbal tea, heat pads and anti-spasmodics to get it under control and quell the urge to just double over and wish for death.

In the middle of this, we discovered a big issue with the project that I’m working on. That wouldn’t have normally got me massively upset, but the project is suppose to go for release on Thursday and the issue could mean that I miss my release. It’s that size of issue.

Plus, I haven’t got the first clue how to fix it because it was one of the few bits of the software that actually appeared to be working correctly. It’s all about which code gets assigned to data for which dates (yes, it’s a load for some huge, complicated database tables) and it’s wrong for some data. Gah.

We discovered this and my boss announced that it needed fixing just as I was feeling particularly ill. I didn’t take it well.

And that is why I nearly ended up in tears at work today.

Thankfully my stomach is settled and feeling fine now. So fine that I’ve got a huge craving for fish and chips or possibly sushi, but I’m playing it safe and having baked salmon with steamed veg instead. My back is…um…yes. And although I’m home, I’ll be spending the evening working because a whole bunch of data needs to be re-loaded for validation first thing tomorrow morning.

Really, this week can stop sucking. I’m serious. Why is food my first thought when things are going badly?

Yuck

Dear body,

I want a divorce.

No love,

AG

Good and bad day

The good: the code for the project that I’ve been working on for nearly two months finally worked properly today. The data still needs to be validated, but this is the first time that it’s run through (twice!) without issues and produced data that looks good on a cursory inspection.

The bad: OMG, indigestion. And bloating. And can we say gas? Plus, did I mention the indigestion? There might also have been a touch of acid reflux in with that.

Hello there, IBS. You’re trying to persuade me that I need to carry Tums with me at all times, aren’t you?

I was so glad to get home. And stuff myself with Tums. And at least be able be gassy, crampy and ick in the privacy of my own bathroom.

For extra fun and laughs, I’m going to be stuck in a minivan (people carrier for the UKers) for several hours tomorrow while I go to Moncton and back for a potentially pointless meeting. Yay? If my GI tract does a repeat of this, my co-workers will hate me by the end of the day.

Worst part? We’ve just had to do our ’employee engagement’ survey and one of the questions was about whether we get indigestion/gas/bloating/cramps/constipa

tion etc. In other words, have you got IBS? And, heh, are we to blame? Not said in those exact words, but the implication was clear.

Some days, my body sucks piggy wonks. Now I’m going to watch Holby City and try to forget about this entirely pointless exercise in management BS. Instead I shall focus all my good vibes on getting home in time tomorrow to join my knitters in the bar and eat yummy food.

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