IMSK appt

iMSK appt was….mainly good.

Didn’t get the MRI referral, which is why the GP fricking referred me there & what I need urgently, so that is absolutely NOT good. But she said she was too worried she’d order the wrong ones, even when I told her what the CCI specialist in the US had asked for.

So she’s having to refer me to a spinal specialist to get the MRIs they think I need, which has a really long waiting list & involves a lot of traveling 🙄
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Consultant also hadn’t been told I was autistic/the adjustments I needed, which Lyle had phoned about last week & was told they’d pass them along.

The biggest issue with this was it meant I didn’t get detailed explanations of what she was going to be doing in tests, or asking for consent several times (as when I’m making I’ll just say yes automatically). So one test involved stroking all along my face, which I wasn’t told about & which pushed me WAY over threshold. It caused hours of struggle afterwards 🙄 She also misgendered me, despite my cap covered in pronoun pins. This also made me autie struggle a lot more, & feel lost/overwhelmed.
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But the good:

  • we’re getting referral to a spine specialist so they can decide which MRIs I need (this will be a wait of months 🙄)
  • she agreed that I almost definitely have hEDS & has said in our next appt we’ll go through criteria.
  • she’s booked me an appt to see her again in 6 weeks
  • she’s gonna talk to the rheumatologist, regarding EDS diagnosis (see below as to why)
  • she’s also getting in touch with pain management & has suggested amitriptyline for me

Apparently in this area there’s no way to diagnose EDS – they have to apply for an out of area grant & send me to a specialist in Sheffield. The grant is exceedingly hard to get, so yet another diagnosis might be unobtainable due to lack of services in my area. Welcome to healthcare in the UK 🙄

iMSK consultant also pulled up my recent bloodwork, & said my inflammation markers were high. I wasn’t told this by my GP surgery, I just got told my iron was low. So she’s ordered a repeat bloodtest before I next see her 🙂

The last 1/4 of the appt was lost to me as seizures were triggered. She asked me to stand up (turned out so she could do Romberg test); I told her I’d have a seizure, she got iffy, but I pushed for it as I wanted her to do all the tests she needed. Unfortunately after the seizure due to all the bright lights I crashed & could barely formulate thoughts due to fog…so I was pretty ‘blank’ for the rest of the appt 🙃
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Overall…kind of a positive appt.

Didn’t get what I need most, but we got some positives.

It did trigger a huge shutdown/meltdown episode, which left me feeling unable to handle going through the city/getting a train home.

As a result Lyle ended up pushing me 8 miles along the canal (constantly reassuring me he loves hiking & the weather was gorgeous 😂) so I’d be able to recover/wouldn’t have to deal with loud noises/lights/crowds 😭

Hugely grateful to him, as I wouldn’t have been okay otherwise. As it was I could rest, recover, & talk through my confusion 💙

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9th August 2019

I’m falling apart, I swear idk if my joints have ever been this bad.

Wrists = agony, shoulders = agony, one hip is being a twat & my fingers are awful too. All my joints ache & pain is immense.

Can’t cope with my phone or Xbox controller, can’t eat with cutlery, can’t hold a drink. Ugh. Trying wrist bands to lower pain.

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Went on a small dog walk today but had an autistic meltdown, Lyle realised it was ongoing fallout from him being ill last night…I always struggle with him being poorly & knowing what I should be doing. That sucked, although Bandit was awesome…peep him alerting post meltdown.

Got a letter asking me to answer a survey on the ambulance service that helped us avoid A&E last month…the only thing I could positively rate the NHS on currently 😂 May be quiet today as Lyle has had to type this for me!

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Check out this storm!! 😱

Discrimination from local council & Cumbria Design Scaffold

We’ve been fighting the council & the scaffolding company (Cumbria Design Scaffold) for several months.

All we wanted was that they put ramps down where scaffolding has made the pavement inaccessible.

My main manual wheelchair is now broken thanks to their inaccessible design, & since then I’ve been unable to get to the shops, transport links, GP surgery, vets etc in the town centre 10mins from my house.

Finally, after waiting months, we were told they were putting ramps down.

Only they haven’t put ramps down, what they’ve actually done is closed the entire fucking pavement & told pedestrians to use the other side.

THE OTHER PAVEMENT IS TOO NARROW FOR A WHEELCHAIR YOU ABSOLUTE ARSEHOLES!!!

Hence why we need bloody ramps. Aaaagh the ableism is fucking breaking me 😭

Without ramps it takes 45-60mins to get into town the accessible way – 45min to the supermarket, 60min to the train station.

Next week I have a super important medical appt, it’s at 10am in the city…we’re gonna have to take the 60min route to get to the train station because the council are disgusting ableist pricks who don’t give a shit about disabled people. Time out the house needs to be kept minimal, that day will have HUGE repercussions on my health, & now it’s got an extra 2hrs added to it…UUUUGH.

Good news from the NHS?!?

(Copied from instagram, 22.7.19)

A REALLY GOOD MEDICAL UPDATE 😭 I’m so overwhelmed rn!
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Quick recap – we had an appt booked with Dr Z this Thursday (blood result & hEDS referral), & Lyle was waiting for a call back from reception to let him know when Dr H (head doc who repeatedly didn’t call us for appts) was in to talk with. He’s the only one who will diagnose ME, which is why we’re still bothering with him. Dr W is my assigned Dr & the 💩 who, months ago, wrote that I was “housebound due to anxiety”, strung us along for ME stuff, then left us with a CBT referral 😡
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Today Dr Z phoned unexpectedly. She’d been researching CCI to try find places to help or info on how to stop it getting worse whilst I wait for neurology next March. She found nothing. She tried to speak with Dr H, but couldn’t contact him (same, same 😂😅). She spoke with Dr W (me & Lyle both looking at each other like ugh)& he mentioned the iMSK clinics – a local integrated musculo-skeletal service. Because it’s a fairly new service in our area wait times are extremely short in comparison. They have PTs, can refer for MRIs, & also have contact with neurologist, neurosurgeons etc 😱😱😱
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So where previously I was having to wait until March 2020 to see the neurologist (who wouldn’t know about CCI), just to simply get the referral for the 2 specific MRIs I need…now I should get a much sooner appt with a specialist in musculo-skeletal issues! They can refer me for the MRIs, & should also be able to appoint a hEDS-competent PT! 😱😭 THIS IS SUCH GOOD NEWS!!! It also meant I was able to cancel the appt this week (less stress yay!), although we had a pre-scheduled appt with Dr W on the 30th, unbeknownst to us. Not sure whether to keep that & give him a second chance, as iMSK was his idea 🤔
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Wow it feels like EVERYTHING is coming together! And I’m so exhausted from crying but so happy!!!

Today we beat the NHS!!!

So, since January we’ve had constant care failings from the NHS.

This has been in the form of ignoring symptoms, recommending damaging and inappropriate treatment, lying, & drs REPEATEDLY not calling for phone appts. Oh, and of course not being able to get a physical appt as the average weight is 2-4+ weeks.

SO!

Lyle phoned up to get an emergency (same day) appt & was told they had loads free, but they’re not letting us book one until this afternoon.
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IF THEY HAVE LOADS OF FREE APPTS, THEN WHY THE FUCK DOES THIS SURGERY AVERAGE 2-4 WEEKS WAIT FOR A STANDARD ONE?!? 😅

The receptionist told us to call back “after lunch” to talk with the practice manager. We have no idea why, given she holds no power & had already told us over the last week that the head GP would call us twice (Monday & Wednesday), & he didn’t.

But once we’ve done that, THEN we can phone the receptionist & book an appt for later today. Because “we’ll definitely have several emergency appts still available then” 😑

Okay, whatever, we can do that.

We called the GP surgery back after lunch, as instructed, to talk with the practice manager – & she’d left!! WHAT THE FUCK?? 😅

So Lyle asked for an emergency appt today, seeing as we’d already been told there were so many available, & had been told we could get one.

The receptionist in all her wisdom decided we didn’t need/qualify for one, as it was an ‘ongoing issue’ – nevermind that it was an ongoing issue that could kill me & which a dr has not even SPOKEN to me about yet!!
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Lyle was furious, but he dealt with her perfectly – he remained very polite but said “as we’ve received no care here, we’ll be phoning 111 after this”.

So we phoned 111, who did the usual of saying an ambulance would take us to A&E (which we do not want, but we NEED help!). We waited for the ambulance service to ring so we could explain the situation better to them.
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The paramedic calls, listens to our whole situation & is *really* lovely. Like, I actually started talking on the phone to him because he was so nice 💙 (I’m autistic & hate talking on the phone, this is a big deal 😂)

After listening to everything, having researched about CCI (& already knowing about EDS!!), he gave us the option of going into A&E or him trying to expedite a GP appt by phoning our surgery himself (😭). We opted for the latter.

The GP phoned within 15 minutes, listened as we explained everything, & guess what?

We have a double appt this evening with a GP 😂😂😂

Well this isn’t accessible…

This is our route from our tiny village into town:

Does anyone know the law that means roadworks/diversions legally have to be wheelchair accessible? Would it just be The Equality Act? 🤔

There’s been scaffolding on the main road into town for MONTHS now, entirely blocking the pavement, & the curbs of the diversion are *huge*, one being about 6″.

I’m lucky I have Lyle, so I can manage, but often we opt to go on the road (which is busy) as we’re scared about the drop damaging my neck or chair 😕 .
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Lyle phoned the scaffolding company early last week (would’ve done it sooner but y’know, a lots been going on 😅).

At first the woman was dead arsey, saying the site had been inspected & declared it passed laws, but eventually she said they’d put ramps down. Still nothing though.

There’s no way to avoid this getting into town (where ALL shops, transport links etc are) as the opposite pavement is inaccessible due to width. Not sure where to report this to (?), but I’d love to be able to quote a law to the company…

Update…

We’ve been super productive this evening. We wrote out the Dummies “new GPs guide to problematic brain measurements & what they mean” (😂), printed that & my measured MRI images out, & sent an email to a CCI specialist in the US.

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If he agrees to take me on as a patient & can use the scan I have (brain MRI from January 2018), it would be a £300 consult fee. We’d have a few months I think to try gather that. If he found something wrong, he’d do a video consultation to explain/diagnose it, & what he recommends. Then we could use his diagnosis & notes to try extricate any help from the NHS (like getting blood from a stone 😂).
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I’m hoping he can use that scan, & not need the £1700 upright MRI…we have no funds, & I don’t want to delay anything! As ever, the process is stressful & very scary for us both. We’re plodding through it together! It doesn’t help when symptoms are so concerning, but I just have to try not to think of them & keep on plodding.