It’s Happening & We Need Your Help!

The last week has been a bit crazy, but it looks like we climbed the ladder of this app idea and instead of slinking back down like scaredy cats, we’ve thrown ourselves down the deathslide of startup business and friction burns are in the not to distant future!

But we need a bit of help from you lovely people….

I know surveys are boring, but if you have a few minutes could you answer a few questions to help us get our heads around the kinds of things you guys need, or share this, or tweet a link to the form for other chronic illness people out there?

https://docs.google.com/forms/d/1QMIsaZHbK6ysVtMAcCSy5sfjqAsNVLQ4lGVDqrFNBqQ/viewform

Or use some other kind of social media that I’m way too old and boring to understand? Xxx

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As always, Nice to have you here.

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The Zebra Stole My Spoons

There’s this lady I know who has inspired me to be a bit more kickass than the boys despite being in a male dominated industry. There aren’t many people who can keep a bunch of nerds in check and stop the regular as clockwork Creative Tantrums and not lose their mind.

Anyway, not only can she corral the nerds, but she’s also a fabulous illustrator and has created these bad boys for our Expect Zebras app. We’re so drawn to the second one and his cheeky face, but the first one has a simplicity that would be easy to work with and reminds me of a sock toy. Uuugh! What do you think?

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I can’t wait to see one of these guys on all our stuff. I never expected these Zebras – what a lovely surprise!

The Machine That Goes BING!

Today was ‘doctors day’ with three different appointments all booked throughout the day. This meant taking the day off from work, but they were very kind to put it all in on one day to minimise disruption.

We started off with some blood letting, for no other apparent reason than I haven’t had a random blood test since June and let’s cause some new bruising. Hey, at least this time I’ll know where the bruise came from…

The nurse was a bit confused as to why I was there and asked if this was a diabetic review. Err no? She mumbled something about it looking like it because of the types of tests that the doctor had asked for. I suggested that it was probably because of trying to rule things out from me being dizzy. “Are you ok with needles?”. “Yep, I’ll just wish you luck finding a vein in there”. And so it came to pass that another medical professional spent 10 minutes slapping my arm to try to get to a vein. Eventually, were were in and it dripped out into those tiny tubes for some lucky soul to gaze at.

Next came my mystery appointment with the Registrar after the physio had a panic at the GPs.

I have to give the guy his due – he was fantastic. He listened, he looked through my notes and he winced when I showed him the photos on my mindmap. He asked if they were all me. I said yes & bent my thumb behind my hand to show him. “urgh!… Oh god, sorry. That wasn’t very professional.”. I assured him that it was fine. And yes, it’s ok to use the word ‘abnormal’. I’m pretty sure my hands aren’t mean to do that.

After looking at my notes, he agreed that the weight loss was indeed down to me just being stressed and dragging myself about despite more pain and who wants to eat tonnes when you have reflux anyway? He also said that he wasn’t an expert on EDS – instant win. I’d way prefer you to accept your limits than try to be an omnipotent GP with me the lowly patient.

We discussed whether the gabapentin was a goer, and decided that it was messing with my head and stomach, so he added another pill to the daily doses for the reflux and upped the gabapentin. Apparently the idea is to hit a fine balance between being able to tolerate the pain and being incoherent. Just to add insult to injury, he also suggested a flu jab. Before I could smile and nod (and put it on the ‘to do’ list), it was there and I’d been stabbed.Yay, no flu for me 🙂

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I, on the other hand have added the TENS machine back into the mix to see if I can try something that isn’t mind bendingly narcotic. I bought some new pads and plugged myself in. It basically feels like a massage from bees, but is nicely distracting as long as I have it on the setting which switches around every 10 seconds. It’s a good way to get through the final few hours before the next set of drugs.

We looked at the timescales for the referral to musculoskeletal people at the hospital and he raised eyebrows about not hearing from them yet. We agreed that they’d probably been chased enough, but we’ll give it another 2 weeks and if I’m still waiting after half term, then he’ll light a fire under them. Apparently this will also apply if I do hear and the appointment is some point after I retire.  So, now we wait. I have painkillers. referrals have been made to everyone. And everyone is awaiting a message from the heavens from Rheumatology.

The final appointment of the day was an ECG. Again, because of the dizziness on standing. The Registrar contradicted the GP I saw earlier in the week when we talked about this saying that dizziness on standing would usually subside if it was blood pressure related. Whereas I am ok on standing, but it creeps up on me after a while and doesn’t fade. Instead we go all tunnel vision and dark until I sit down. Apparently, the ECG will rule out anything horrendous, and is a gateway to asking for a tilt table test. Boxes must be ticked.

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Later on, whilst sending back student work from home (I love Google Classroom – they can’t escape me even when I’m hooked up to machines!), the hospital physio rang back. It’s been agreed that I’m too complex for them and I need to go to the Pain Management Team. So… the physio has referred me to my GP who referred me to the Physio, to refer me to the Pain Management Team. I’m reasonably sure that wouldn’t make sense even off the painkillers!