Posting as feel guilty about not doing so.
Saw a new and different consultant today, to be honest I didn't take to him that much.
He put a camera up my nose which shot down the back of my throat before I had time to say please be careful - he didn't take any time to explain what he was about to do and he passed wind at the same time. Don't get me wrong I absolutely understand that farting is a natural process but please sir not right then when it made me want to laugh like a child whilst I had a wiggly camera up my nose.
I tried to explain about local anaesthesia to him as he said grommets for you then or would you prefer a hearing aid. I tried really hard to say with my family history it will be grommets and a hearing aid. I am nearly 46 and I have to have grommets. I will say this in the bloggy world but not to too many people outside of it. Children get grommets - not nearly menopausal women surely not.
He refused to take on board that there may be a problem with local anaesthetic on the grounds that it will be a cream on my ear drum. Excuse me - could we have a conversation about this obviously not. I needed reassurance on this front. That it isn't the same local anaesthetic cream that I am allergic too that does not work anyway. I have time anyway to research this so am not panicking too much.
I just get a bit pissed off when new Consultant's talk shite about EDS showing that they know absolutely nothing about it whatsoever. Never mind I have time on my side. Good, that will give me sufficient time to talk myself out of the whole thing then then spouse will talk me round. I am however NOT having anyone pierce my eardrum with anything if there is any doubt whatsoever that the cream won't work. Sorry but too many bad experiences with well meaning health professionals who have told me that it won't hurt when it does means I am stubborn on this factor. So I will require gold plated evidence that all will be fine and then I will co-operate.
I am not pain adverse afterall I have spent all my life making an in depth study of it. I am not a whinge bucket when it comes to it. In fact I am pretty stoic. I just don't fancy my eardrum being pierced without it not hurting - having suffered multiple perforations and know how painful it is willingly have it happen followed by a thingy being inserted is not my idea of fun.
The weather is good. So that's good. I am warm not cold and that makes me happy. Outside has been hot so I have been shade seeking and am becoming expert at this. Years ago I adored the sun, nowadays we have a tumultuous affair. You know the type of thing love/hate blah blah
Husband & I are going to stay in an eco cabin designed for campers who don't like to get wet and also is on a fully disabled access site which is adult free. (Cabins have larch exterior and sturdy canvas canopy). Now don't get me wrong I love kids but we are not ever without them so I am looking forward to going camping without getting wet and without other people's kids around. Its not booked for yet but I am excited as its for three days only - I know but I miss my pets. On my birthday and a day later our wedding anniversary. Also its at the base of Glastonbury Tor glastonburytor.org.uk (no obligation to click on link unless one is interested in tales of historically important mythical places) so am even more pleased as apart from Glastonbury Tor its a lovely flat plain. I like flat these days - I know I don't walk far but I do like a campsite that is not on a terrace where one gets to visit one's fellow campers in the middle of the night because of the lay of the land! Just so you know we haven't booked for the legendary festival having done that thing many many years ago more than once and despite the fact that there are many many middle aged hippies who do still go I don't intend to be one of them, preferring instead to have hazy memories of it that I can wrap up in my mind as much more laid back and happy clappy than they actually were!
I know I know its not real camping as it has electricity and a kettle but to me with me 'ol joints it means I get to feel as though I have been camping without the agony. I am very very excited and for the next few weeks am going to drive spouse mad with my all things camping conversation. He can fish and I can pretend to but read and we will be happy campers indeedy. It isn't either very ecological friendly due to kettle etc of which I am guiltily aware but it is an eco cabin! Which is better than not. The site has the David Bellamy award for conservation as well for its tree planting and re-cycling so that makes me feel a little bit less guilty.
The only thing I know I will do is fall off the wooden platform but I won't mind I fall over everything at home as well. Whilst the site is fully disabled friendly they obviously forgot about a ramp on these eco cabins - I don't mind though as I will write a polite note after we have gone thanking them for the lovely home made cakes and organic meat from the farm shop and just mention the falling off the thing thing. Afterall we are supposed to be camping and tents don't have ramps do they.
Photo's blurred apologies but I didn't take them as we haven't been yet
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A King Size Bed!
My mother said it looks clean, my guess is this is polite for basic.....
My mother said it looks clean, my guess is this is polite for basic.....
I am off to cuddle my kitten and to sleep hopefully.
Happy Camping.
12 comments:
Yay camping. I did the hard yards when I was younger and stupider, so I say bravo on your choice of camping sites. Jealous that you will be at Galstonbury Tor as that's on my list of places I want to see and probably never will.
Hope hope hope the ear thing goes well. Some docs are crappy I just hope he knows what he's doing and treats you well and with appropriate working anaesthesia. And damn, you should always have fair warning before anything is inserted into and orifice. That's just the decent thing to do. I had a breast surgeon discuss his golf plans on his mobile whilst he grabbed my naked boobs. Cause the lump wasn't making me feel vulnerable and stressed enough. I swear we are just another bit of meat to them.
PS Is it wrong that I can only think of David Bellamy in the context of that Goodies episode with the Watership Dawn scene.
I want somewhere like that to go camping at! Nice!
And I say keep bugging them until they can assure you that without a doubt, it will not hurt you. And not the 'this won't hurt a bit' 'aaaaaargh' type won't hurt.
yes Michelle it is the David Bellamy you speak of. You have a good memory, I don't remember the episode at all! yes David Bellamy is the one with the most amazingly funny/irritating voice depending on one's perspective. Urghh that surgeon sounds so nice - not! Poor you.
More research to do veronica on the 'no hurt'.
Still excited silly exicted about the weekend and its not until August! My poor poor OH.
Oh man I miss camping!! We go every year, but somehow, being in Texas my husband figures it's better to go in the 20 degree weather... There's not much of a spring or fall here, so it's either 20 degrees or it's 105... (fahrenheit that is). Last year we rented a little eco cabin like thing for the kids while we used the tents. It was 102 while we were there and dusty, but the river and waterfall totally made it worth it! No shame and no guilt in it!! It's a way to get away.
On another note, my husband had a pulmonologist do the same thing to him!! No warning! Just shot lidocaine up his nose and then the camera and all the way down the back of his throat! Ugh. He was very unhappy!! And the guy was rude...
You do what you know you need to do to protect you! =)
Is there any way you could convince them to try the anaesthetic on a different part of your body, like your hand, and try a pin-prick test BEFORE they go sticking things in your ears? Also a good way to check for an allergic reaction at the same time.
Now, what I want to know is... does that eco cabin have an eco loo too?
Achelois...whatever you do, please don't go falling down an eco loo. Not recommended!
Actually, you're talking to a hardened camper here. Used to love camping but these days, I admit to preferring a comfy bed and flushing loo. Your eco cabin looks like a great solution to enjoying the great outdoors without having to go tribal!
I'm afraid that consultant doesn't win any compliments from me. I've a good friend (50+) who gets a grommet put in one of her ears every few years. She also needs hearing aids and manages well with them. I'm surprised to hear that these days they are doing grommets without a quick general anaesthetic but I suppose that's the safest option if not the most reassuring for you.
Long may the sun continue to shine!
(ps - have left a question for you over at my place and would love to hear your answer)
Achelois
Thanks for your reply but this was the question I meant for you...
"I’ve been meaning to ask for a long while and your mention of steri-strips has reminded me... do you have trouble getting all cuts to heal? Only my hands seem to be affected in this way… well, that is until recently, when my head/nose decided it wouldn’t heal. I’ve terrible problems getting my hands to heal if I get a small cut/burn. Cuts gape wide open, are very prone to infection and will only heal if I tape the sides of the wound together. My palms/fingers are markedly creased and the backs of my hands are covered in paper thin scars. Does this sound familiar to you?"
Oh Steph I am so sorry just shows how observant I am!
Yes is the answer to all that you ask about cut healing in every respect. Its more my forearms at the back that are covered in burn marks scars long thin one's (I get these just going near a cooker) Professor G remarked on them on my initial visit all those years ago so you can imagine now. My hands have raised veins and yes are creased so much - no matter the expense of any hand cream. Getting even minor cuts to heal is a major issue but I don't really see the scars for all the creases!
Thanks, Achelois
It's funny how so many of the peculiarities of EDS are perceived as being normal simply because we've never known any different.
I always presumed that everyone had problems getting their hands to heal until my husband told me otherwise (about 30 years ago). It was my GP who subsequently pointed out that my creased hands fitted a diagnosis of EDS.
Now, I'd love to know if you or any other EDS blogger who has kids, had problems breastfeeding?
I had none of the usual problems associated with breastfeeding such as soreness etc but it soon transpired that I'd no natural let-down reflex and had to resort to using an artificial hormone replacement in the form of a nasal spray, with limited success. I longed to totally breastfeed both of my children but no matter hard I tried, was never able to match supply with demand.
Is this a familiar EDS trait too?
OMG! Camping, how fun do those cabin tents look. I hope you have a wonderful time & don't fall off the platform more than once ;)
On the 'no hurt' thing the only way I've found of making the 'I know best' doctors to take it seriously is to insist they not use any form of local anaesthetic at all. It freaks them out so much they get really conscientious...and usually find another approach. If all else fails might help? Though, tbh this guy sounds like a consultant to run screaming from & insist on being referred to someone else? Xx
Steph: Sorry for butting in...but about the reflex thing. The new type of physio I'm working on is related to the problems EDS ppl seem to have with reflexes not working quite as they should. My physio thinks the reflexes are there, but they seem only to work sluggishly & require more stimulation to make them work than is typical. I think we're on to something as the improvements overall from doing what seem like ridiculous exercises is impressive. BG Xx
On the breastfeeding I did for 12 weeks with both. Full of milk but none initially arriving to either baby. Annoyed midwives would attach pumps to me and made me feel a complete failure. I did perserve but never really met with demand either. I didn't have the intervention you had but at that time the midwife, then health visitor I had just wasn't that interested and said to supplement with the bottle. All mild disappeared with both babies at 12 weeks.
On reflex testing sometimes with me there is no response at all and sometimes too much of a response! Many years ago pre-diagnosis as a teenager I punched an unsuspecting doctor straight in the face. I don't know who was more suprised him or me. The other thing I get when relexes are tested is shooting nerve pain, they reckon my thin skin's nerve ending are very near the surface.
Don't go near me with a tuning fork though, they render me ga ga!
A physio also said years ago that often a consultant will not appreciate the extent of hyperextension hit the knee for example whilst the patient is actually not in the correct position in the first place for a positive outcome on a reflex test!
Hi Trish xoxoxo - I had no lidnocaine anyway up my nose just the camera straight up it with no warning and am suffering now as my tender tissues don't take kindly to that kind of assault!
I am thinking of going to gp to discuss whole grommet procedure as I am not prepared to have it done under local to be honest. I have to weigh up the pro's and cons as I have a permanent ear infection and swollen neck which is both painful and I am very very deaf.
Still silly excited about mini camping break.
Achelois
I never understood why I had problems with breastfeeding but with what you and BBS have told me about reflexes, it makes more sense now.
Breastfeeding my first baby was a nightmare as I only had foremilk so he was never satisfied and of course, failed to thrive. I had to start supplementing his feeds at 10 weeks as he was still at his birth weight!
By the time my daughter came along 7 years later, I was prepared with an oxytocin nasal spray to hand to encourage the let-down reflex and it worked but I still had problems meeting demand. I had to start supplementing her feed at 3 weeks as I could see things deteriorating by the day.
La Leche League would have you believe that all mothers can breastfeed if they persevere. Well, I beg to disagree. I did persevere and I gave it every chance to work, spending hours and hours doing nothing else for weeks but no matter what I tried, I never had enough milk to go around.
I hated bottle feeding because of all the preparation it took. I still have nightmares occasionally about being on a journey somewhere when I realise I've left my baby behind by mistake. The nightmare is always compounded by the knowledge that I've no bottle sterilised ready to make up a feed!
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