Posted by Red in A sad health update on 2019-07-02 11:31:04

And this morning's total lack of progress: Here we go again. Tired of this shit doesn't even come close. Receptionist rang this morning to say our notes were on the system as of then - when they'd told us YESTERDAY MORNING they'd be on for the evening call!! So if the GP *had* bothered to call, he wouldn't have our notes. Receptionist was unaware GP hadn't called us. She called back saying the head dr had put a note on the system telling us to go through (get treatment from) dr Wrigley - that's the **** that wrote I was "housebound due to anxiety" about severe ME, & who said for 6 months he was looking for an ME specialist, then gave me a number for phone CBT. So...no. We'd already told the head GP allllll this, we *still* have a c...





Posted by Red in A sad health update on 2019-07-02 11:27:17

Copied from instagram, a post from last night - I've tried to edit out all curse words: I am SO ANGRY. We both are. The head GP didn't ring, did he? *rage screams* Lyle phoned the surgery this morning to check the call was happening & notes were on the system (they weren't, staff then promised they would be by 5.30pm). At 5.40pm Lyle rang the surgery, double checking we were still getting called (entirely because they're useless & we don't trust them). Receptionist assured us we were definitely getting called, between then & 7.30pm. . Since then we have done NOTHING but anxiously review our notes, goals, & wait for the phonecall...and he DIDN'T RING. Honestly, angry doesn't even come close - fuming, tearful, terrified... . It is ...





Posted by LynnW in watch this space on 2019-06-29 20:52:56

Kate, That Is Wonderful!!!!





Posted by Kateb in A sad health update on 2019-06-26 22:33:49

Sounds like you're getting there slowly - hopefully they'll take you seriously and investigate and not fob you off. Keep in contact with PALS and keep up the good fight!





Posted by Red in A sad health update on 2019-06-25 13:31:26

Hey all! I know Lyle has done a fantastic job of keeping this thread up to date, & thank you for the support. Here are some measurements we got today (CXA, Grabb-Oakes & Harrison) that are used to indicate CCI & spinal abnormalities. I hit 3/3. This is particularly awful knowing that this was in JANUARY 2018! That's...terrifying But this is more arsenal to fight drs, there's simply no way they can brush this off or continue to petulantly blame MH - they *must* listen & DO something now. We're going to print these out & drop them off at the surgery with an explanation of what they mean. Hopefully the seemingly good dr will look at them before the telephone appt next Monday. And hopefully this will give him incentive to rush a ref...





Posted by Edge in A sad health update on 2019-06-24 21:04:46

Thank you for your help Kate, it is really appreciated. Dally has found from the CCI group the names of the private hospitals that do upright MRIs, so we will most likely contact them, also. Makes sense to get the ball rolling and know what the price would be if needed. We had some really good news today. Firstly I called PALS and was given advice when calling the surgery back, which readily helped. We have a phone appointment with the good GP (who is away for several months) next Monday, so will at least be able to speak to a doctor who we know will listen and seems to actually want to help. Secondly today I phoned up the hospital that did Dally's brain MRI, January 2018. We were never given the results just assured by a GP they wer...





Posted by Kateb in A sad health update on 2019-06-23 18:56:54

Hi Lyle/Dally, that is such good news about Finlay - you couldn't have wished for better and I hope it works out and they are able to take him. You've put so much effort into training him and he in return has worked so hard with you he deserves this new family. I did think that Kasper was probably too nervous for walk my doggy or whatever it's called, but it was just a thought if you get to desperation point. I spoke to my friend at work whose husband is a Consultant Radiologist. I explained about the upright CT and she's going to ask him if he knows of anywhere that has one. She's pretty sure the NHS don't - unfortunately as much as we all love the NHS it really is only geared up for the majority and anyone with a rare condition isn...





Posted by Edge in A sad health update on 2019-06-22 20:54:59

Finley has found a wonderful family, and we could not have been luckier. There's a family that live down in Cornwall, but visit the village by us several times a year. They have an 8 year old chocolate Lab, but lost their black Lab last January. The wife happened to look on rehoming sites whilst she was up here, she doesn't look often and only contracts dogs she feels extremely strongly about, she saw Finley and thought he was the one. I met up with Finley, Bella, and her owner both yesterday and today, and we're meeting up daily for morning walks. The woman is at home 24/7 and the dogs are very much part of their family - they are allowed on furniture, have there own human-size double bed to sleep on, are walked hours on the beach every...





Posted by Edge in A sad health update on 2019-06-22 20:48:42

Update - currently we are sending our time researching ways to try prevent Dally's CCI from getting worse. This involves wearing a specialist neck brace (which we learnt about through the online CCI group) & doing hourly PT exercises (again learnt from the CCI group). These are to stop the muscles in Dally's neck weakening as a result of wearing the brace, and to strengthen them to try enable their neck to hold the skull up better. The CCI group is very helpful, but they can only offer minimal advice. Most their advice revolves around which drs in the US are good/have knowledge about CCI. They can't help in the UK, because there aren't any. It's heartbreaking reading UK posts there, all saying the same thing and begging for help. Yes...





Posted by Edge in A sad health update on 2019-06-22 20:33:08

Thank you NN this means a lot to us.





Posted by Edge in A sad health update on 2019-06-22 20:32:39

Hi Kate, we have been told by our dr that she is "unwilling" to treat Dally, as she has "no experience with ME or CCI". I don't see how this is at all legal, and this is after fighting through several other diabolical GPs...so currently we can't even access a GP, never mind more. We are literally out of options, drs WILL NOT treat us, and we don't know where to turn. I am contacting PALS and our MP on Monday, in desperation. The issue is that CCI and the amount of damage done, can only be seen on an upright MRI. The NHS does not offer this test. From our (admittedly mild so far) research into the cost, we're looking at a minimum of �1700. But I think we need a referral to be able to get in touch with the private hospital (?), & we're str...





Posted by Edge in A sad health update on 2019-06-22 20:21:52

Hi Diane, the cost of surgery is around 100-180 thousand pounds total. I don't think that fund raising was for all of the funds, I think it was done by a family member who wanted to help (if I'm thinking of the same one). This one, for example, is raising several thousand pounds, & it's just to see a private specialist who can perform the scan needed to send abroad for the CCI specialist; this is before his prices, & then the extortionate amount for the surgery itself. https://www.justgiving.com/crowdfunding/getlaurentolondon This patient needs �250k for the surgery, & is fund raising: https://www.thesun.co.uk/news/8129570/samantha-smith-ehlers-danlos-syndrome-gofundme-life-saving-surgery/he Also a surgeon in the US, but �150k:...





Posted by DianeonWhidbey in A sad health update on 2019-06-22 17:57:14

Just googled 'surgery for CCI in England' and the first thing that popped up was a crowdfunding campaign ("Just Giving") for someone's niece with hEDS and CCI. Her surgery cost 1,645 pounds and they raised that amount on there, with just 21 people responding. It appears she got her surgery in Spain.





Posted by Kateb in A sad health update on 2019-06-19 23:19:24

Oh wow - devastating doesn't really cover it. I'm so so sorry. Of course you know how we all feel about this - you and your family (human and animal!) have become a part of our families over the years too. I can only imagine what you're going through. All those years of misdiagnosis. On a positive note, you have each other and are so strong together. I have always been amazed at how you keep going and find solutions to the issues you've had in the past. On a practical level, my friend has joined a group called 'borrow my dog' or something like that. It's for people who want a dog but for some reason can't have one so they help out with other peoples dogs - walking them, having them overnight, that sort of thing. Maybe it would be...





Posted by nanny north in A sad health update on 2019-06-19 19:59:58

I don't know what to say, I just feel totally devastated for you both. Enjoy your time together to the full, Thinking of you with so much love will chat again real soon. xxxxxxxxxxx





Posted by Edge in A sad health update on 2019-06-19 15:51:33

Hi CC, Lyle here. I've been filling in for Red helping answer questions as much as I can. I will pass your love along. The issue with Finley isn't his pulling, but his size or weight. One small jolt could kill Dally. The neck brace slows Dally's spine crumbling, but will leave them weaker to knocks - they have been told they must never bend their neck back or look up, for example. Having large dogs in the house becomes very scary. We are hoping we can keep Kasper as he is old, not boisterous (he doesn't play, for example), and he is excellent in his crate. Walks aren't an issue as Dally doesn't come on them, although Kasper only has two very short walks a day so that is better too, as they are alone less. It's likely we will have to trav...





Posted by chief chicken in A sad health update on 2019-06-19 15:20:37

Red, I'm both sad and happy for you; sad that they can't help you yet happy because you now know the root of the problem. It's good that the neck brace is helping you so much - such an improvement in the number of episodes! Are you sure you need to rehome Finley? He's been such a star in his training I'm sure he could be trained not to pull on the lead. My thoughts and prayers are with you all. xxxxxxxxxxx





Posted by Red in A sad health update on 2019-06-18 23:41:50

Long time no update everybody. This isn't a good update. It seems that my spine is pressing against my brain stem, & that's what has been causing all these lovely symptoms that the NHS has been blaming on my mental health all these years. It's called Craniocervical Instability, & has happened thanks to my ehlers danlos syndrome (why I've always been so bendy). But yeah, that's the cause of my ME, seizures etc etc Unfortunately the NHS don't treat/manage/really do anything for CCI, & the only place fusion surgery is available is abroad. There are only 4 surgeons worldwide who do the surgery, it's high risk (because duh, fusing my spine) & costs �150+k, so not an option. In the meantime we're trying to find ways to stop my spine deg...





Posted by DianeonWhidbey in watch this space on 2019-06-13 17:50:49

That is awesome.





Posted by Kateb in watch this space on 2019-06-11 21:11:00

Yes! They sent pictures the next day of him relaxing and enjoying his new home - it was like he'd been there years!!





Posted by Kateb in Where is everybody? on 2019-06-11 21:09:24

I don't understand why these on-line sites don't let you specify a garage. Get fed up reading loads of stuff before realising it hasn't got your 'must have'





Posted by chief chicken in watch this space on 2019-06-10 16:15:56

Fabulous. Did she go ahead with it?





Posted by chief chicken in Where is everybody? on 2019-06-10 16:14:28

Amazing isn't it; you ask for a cottage with two bedrooms and a garden and get details for 6th floor flats with no garden and 4 bedrooms...





Posted by DianeonWhidbey in Our Street on 2019-06-09 16:53:02

GN and Kev! Amazing. Yes, true heroes. So glad this story turned out well. WOW.





Posted by Kateb in watch this space on 2019-06-02 21:49:54

Good news!!! A lady and her daughter came into the centre on Saturday and saw him, fell in love, read about his condition, had a chat to her daughter, and spent some time with him. I asked the deputy manager if she'd have a chat with her about him. She was still really keen. Then she spent some time thinking, chatted to another couple who come in every now and then, and decided ... he's the one!!! So lovely ginger and white boy Jock hopefully has a new home - fingers crossed she doesn't change her mind, but if she does it's OK. It's all about the right cat and the right home.





Posted by Kateb in Where is everybody? on 2019-06-02 21:43:44

That's what HE'S doing!!!





Posted by chief chicken in watch this space on 2019-06-02 16:16:37

Posted By: Kateb. I didn't realise he was diabetic - we have a diabetic boy at rehoming and no one wants him because it's too much responsibility and expense. But he's such a lovely boy he really is worth it - I think we should send a poster to the hospital diabetes dept to see if anyone will take pity on him and take him in. > Genius idea!!!





Posted by chief chicken in Where is everybody? on 2019-06-02 16:14:18

Start sending off for details for houses approximately twice your price limit; he'll be jolted into action...





Posted by LynnW in Our Street on 2019-06-01 19:02:53

OMG, NN..you are married to a true hero!!!





Posted by Kateb in watch this space on 2019-05-30 22:02:33

Caitlyn and Eva (Danny's fiance's daughter) were funny on Sunday - Eva had a sleep over here and apparently woke up early, so Caitlyn told her it was 5am and to go back to sleep. When they got up she admitted it was probably about 8am but she wanted to go back to sleep so fibbed to Eva!! They get on really well which is lovely to see. I didn't realise he was diabetic - we have a diabetic boy at rehoming and no one wants him because it's too much responsibility and expense. But he's such a lovely boy he really is worth it - I think we should send a poster to the hospital diabetes dept to see if anyone will take pity on him and take him in. He tolerates the injections well - was Sootz OK having his? It's so hard to let them go, but so...





Posted by Kateb in Where is everybody? on 2019-05-30 21:53:41

I've started decorating room by room - have done the downstairs loo, en-suite, and bathroom. Kitchen next. Hubby has realised that I'm doing it to get ready to move and is claiming he's found "the" house (he hasn't - it was tiny, overpriced, and sandwiched between to A roads!) and thinks our house is worth �50k more than it is. Funny how he doesn't offer to help decorate though!!





Posted by Kateb in Our Street on 2019-05-30 21:45:45

They are both true heroes!!! People can be thoughtless sometimes - I would be so grateful I'd be driving him mad with thanks!! Do they realise it was GN and not a fireman that got him out? Very exciting in a scary way though isn't it!





Posted by chief chicken in Our Street on 2019-05-29 23:15:09

People are odd, aren't they? As you say, a thank you is the least they could do! How brave of GN and Kev; you'll have to knit them a medal each! Well done, GN and Kev. WE appreciate your courage!





Posted by nanny north in watch this space on 2019-05-28 19:17:09

Thank you so much kate, that is so sweet of you to feel proud of him as well. he is here tonight so will pass it on to him. Got him and the girls for five days. starting tomorrow. G/N is busy upstairs he has turned door to open on opposite side so we can get a second bed in the back room. We also had to get the wardrobe out to make room and I nearly had a broken my wrist when he let it slip on me !!! Boy it made me swear...�.felt better after though nothing like a good ole swear to sort things out ha ha The girls have been sharing a bed and boy they squabble when they wake up it usually starts about six in the morning way to early for me so hopefully a bed each will solve that problem ! Soots had diabetes Kate we kept him as long as we c...





Posted by nanny north in Our Street on 2019-05-28 19:02:37

We had a right ole drama two doors away from us (posh bungalow side)on Sunday night. G/N works on Sunday and doesn't get home till about 23.20. He always come up stairs to say he's safe home and then I nod off for the night and he watches about an hours worth of TV to unwind. Well just after one I woke up and thought goodness his TV is loud, then I realised it was some one shouting outside. So I look out of the window and am shocked to see said bungalow on fire I scream down to G/N to go and see if help is needed. Kev next door has run out and hammering on the windows and shouting. G/N sees man who lives there in hallway surrounded in smoke and manages to drag him out and thankfully the woman and dog come round from the back with Kev. Then ...





Posted by nanny north in Where is everybody? on 2019-05-28 18:43:11

Ha ha ha can I come and watch please?





Posted by chief chicken in Where is everybody? on 2019-05-28 17:54:12

Do it....do it...do it...





Posted by Kateb in Where is everybody? on 2019-05-27 20:33:16

Tempting...!!!





Posted by chief chicken in Where is everybody? on 2019-05-24 19:55:31

Depends who's looking, really...





Posted by prettyhen23 in Introduce yourself here! on 2019-05-23 18:49:12

Hi im liz hart does anyone want knitted jumpers for there hens let me know pls





Posted by Kateb in Where is everybody? on 2019-05-16 22:32:05

I'd rather hammer them but for some reason it's not allowed!!





Posted by chief chicken in Where is everybody? on 2019-05-15 18:48:10

Hammer some nails into the fence, barely longer than the thickness of the fence. POP!





Posted by Kateb in watch this space on 2019-05-14 20:20:52

I saw the FB post about your son. It's fantastic news! I don't know him (of course) but I felt really proud of his dogged determination- I hope his girls will realise when they're older just what they mean to him, as well as you and GN. I'm dreading my son moving out when they can afford somewhere - I'll miss my grandkids so much!! What happened with Sootz? Was it ill health or accident?





Posted by Kateb in Where is everybody? on 2019-05-14 20:10:18

My neighbours needle me! Dreading the next bank holiday - rarely take a day off because of the bloody footballs. You never know though, it might rain!!





Posted by chief chicken in watch this space on 2019-05-13 16:49:19

Lovely to hear from you, NN: so sorry to hear about poor Sootz though, bless him. Glad your son's dogged persistence paid off - must be lovely getting family back!



