Diabetic Retinopathy

heidi_ho

Hi Everyone

I have been a long time reader of boards.
I dont quite know where to start and know i will forget something.

I have type 1 diabetes 15 years now. I was diagnosed with diabetic retinopathy late last year. I have had laser and a vitrectomy on one eye and due to have another vitrectomy on the other eye soon.

I just wanted to say that if anyone is facing this type of complication that i know how scary it is and if anyone has any questions i can try to help.

thanks for listening.

tbh

Hi! Do you mind giving us a bit of background? What's it like? And what were/are your sugars like? Will this proceedure clear it up forever or make things better?

sorry for the questions, nice to talk to someone who's been there Welcome!

heidi_ho

thats ok glad to answer all questions.

Background is i got diabetes when i was twelve. I was ok at first but then went through a very difficult period in my life and didnt care about self destuctive behaviour. drinking, no insulin, bullimia.

It has taken this scare to wake me up.

Its very hard. I was practically blind at firsi after the laser to seal tne new abnormal blood vessels. I fell lots, had to reg for the council of the blind, great patient people.

3 mths after tne first op had the vitrectomy and 6 weeks for trauma and swelling to go down. only last week after 8 long mths of lost independance and taking wrong insulin doses cos i couldnt see my left eye is improving. still dealing with bullimia but diabetes much improved.

Prognosis is hopeful. It will never be cured but can be controlled.

Thank god for the zoom on apple pcs!

Thanks for being interested,

tbh

My first reaction was to say "that's really great!" but it didn't seem right! It's good tho that you're getting back to some form of normality. It's also good to hear from someone who's been through it. For example, I knew the risks of going blind, but never really thought how hard it would be to take insulin when you can't see what you are doing. Hopefully your next op will go well and you'll be flying!

SeaSide

welcome on boards.

great to see that your getting it together - its never easy

have you come across http://www.vicsireland.org/

heidi_ho

i had never come across thar site before, thats the type of thing they show u in the NCBI. Zoom on windows is useless on its own. It costs about a 1000 euro. the apple zoom is so good,

Thanks for welcoming me i know i dont deserve it as its all my own doing.

mike65

Hi as a veteran of the condition (I don't call it a disease) I can only sympathise, your trauma is a wake-up call for those who wander from the "straight and true"

btw, the browser Opera has a zoom feature built in, can be very handy even if normally sighted.

Mike.

tbh

heidi_ho wrote:

i had never come across thar site before, thats the type of thing they show u in the NCBI. Zoom on windows is useless on its own. It costs about a 1000 euro. the apple zoom is so good,

Thanks for welcoming me i know i dont deserve it as its all my own doing.

hey! less of that now, you're among friends here

heidi_ho

thanks for that, all my family and friends just think its so easy to control your blood sugars and say why didny i just take care of jmyself better and etc.

My grandfather had diabetes abd my aunt has it and she is really good with hers with no complications and why couldnt i be like her.

I gurss i stayed in denial for too long.

SeaSide

heidi_ho wrote:

I gurss i stayed in denial for too long.

Sure we've all been to Egypt at some stage

mike65

Banned!

Mike.

heidi_ho

ahh dont ban him/ her, s/he made me smile and lightened the mood!

Anyways things could always. always be worse...

SeaSide

Its OK he's no Mod in these parts

*pokes Mike with a long stick*

The_Conductor

SeaSide wrote:

Its OK he's no Mod in these parts

*pokes Mike with a long stick*

I am.

Seaside warning- if you want to have fun- off you go to AfterHours. This is not the appropriate forum.

Messing on this forum will initially result in a warning, followed by a temporary ban, followed by a permanent ban.

S.

SeaSide

We all deal with things in our own way.

The_Conductor

SeaSide wrote:

We all deal with things in our own way.

No worries.

heidi_ho

sorry if i made ye worry about your own securites.

i never meant to upset anyone or to offend anyone,

I only just wanted to clear my chest,

tbh

no upset or offense taken, Heidi, don't worry

heidi_ho

ok tbh I am glad about that

I have a nasty little habit of making people feel on edge!
I notice even my own family gets uncomfortable.

LegacyUser

heidi_ho wrote:

Thanks for welcoming me i know i dont deserve it as its all my own doing.

me dia-b too, don't know why I abbreviate it verbally to diyaB. maybe it's a complication.... I try to not say "I am a diabetic" but "I have diabetes" ... ! I got a big book (like 2000 page med textbook) in an effort to scare myself, it would help if I read it I guess! Agree with other poster, diabetes is a "syndrome" according to my big book, at least only a "condition", it's not a disease. my Dad, who for my sins is a doctor, tries to diminish my distinguishing factor by referring to it as the "most common deficiency disease in the world" ha! that's Type II he's talking about (Type II - Pshhaw!!!) ( ) I await my complications, they are mine! I will own them! oh god. don't blame yourself, I know, I know, I know, (spot check: 6.3, hey! he pricks, he scores!!! hee hee obviously I was expecting worse!) but you didn't ask for this honour, it ain't your fault, and lord you were only a kid yes, control, I know, I try, we try, I know, but please don't blame yourself, for me, for us very best of luck!

tbh

lol

I'm with you on the "not diabetic, have diabetes" front - my g/f doesn't really get it, but it's important to me!

The_Conductor

tbh wrote:

lol

I'm with you on the "not diabetic, have diabetes" front - my g/f doesn't really get it, but it's important to me!

I think its a Type 1 versus Type 2 thing.
My little wifey would agree with you on this too.....

tbh

you know - I never thought of it that way before, but you've struck a chord - maybe! My main reason for saying it is that It's part of me, but it doesn't define me.

CathyMoran

It's the same with me and cancer - I have diabetes but it does not define me. For me it is a combination of the two.

mike65

Stand up and proclaim - I AM DIABETIC

C'mon now all together!

Mike.

SeaSide

smccarrick wrote:

I think its a Type 1 versus Type 2 thing.
Aka- those who through misfortune have it, as opposed to those who have it through self-affliction.

I really think that you should reconsider being a mod on this forum.

tbh

mike65 wrote:

Stand up and proclaim - I AM DIABETIC

C'mon now all together!

Mike.

is this different from I AM *A* DIABETIC?

I think your phrase is a nice compromise. "Just the facts"

tbh

SeaSide wrote:

I really think that you should reconsider being a mod on this forum.

SeaSide, I can see where you are coming from, but if you know Shane at all, you'll understand the context of this remark. We have discussed this on other threads, Type II diabetes is seen as being self-inflicted in the media - not on this forum, and shane's comments in other threads fully reflect this, thats why I didn't have a problem with his post.

As ever, if you have any problems with a post, please use the report post function to bring it to a mods attention, lets not start sniping on threads.

LegacyUser

Heidi_ho, I read your post again and realise that you are looking TO help and not FOR help! so sorry if my "you are not alone" post was a bit patronising. I've been lucky so far, I have had a couple of check ups recently and all it well with my eyes. This is not wholly on topic but I guess you learned a lot about diabetes and eyes so what do you think of contact lenses and diabetes? I've just gone and gotten "monthly disposables". When I went back today for a check up after a week she spoke about spots caused by air bubbles. She said it wasn't a problem as such. I had clued her in from the first about the diabetes. I do want to be able to wear them because I'm getting older and I want to squeeze the last of my looks out of me. I know you are in a very different position to me but well, maybe I am making a mistake. Contacts increase the risk of infection, this type even more, due to any injuries not being oxygenated as much as otherwise. But retinopathy is a different matter. Oh I'm not looking for medical advice! I'm just saying do you think I'm an eegit or do you know loads of diabetics with contacts?

The_Conductor

SeaSide wrote:

I really think that you should reconsider being a mod on this forum.

It was not my intention to cause offence to you or anyone else with my post, and I apologise if I inadvertantly did so. I have editted my post accordingly.

Kind regards,

Shane

SeaSide

Hi Shane,

No worries - got me wound up a bit but I accept your intentions were without malice.

All the best to you and yours

JB

heidi_ho

well everyone, i have just been catching up. Here is an update of things at the moment,

just been released from the hospital after 2 weeks, and i felt every minute there. Although all the doctors and nurses were so good.

Had vitrectomy no 2 done and it was a success, thanks to my wonderful surgeons. there was an abrasion alright on my eyeball which c aused slightly more pain than the last one. As usual because of the diabetes all my cuts and bruises no matter where take double the time to heal.

I then suffered another complication from the general anesthesia resulting in me not being able to pass my water. Cut long painful story short was on the bag for a week and now have to self catherise myself 3 times a day and hopefully it will resolve with time.

I just came home saturday and still feel totally wrecked.

But vision wise it is a miracle.... I can actually read my post, texts, see telly, read signs, see the footpaths, wheelie bins and things people generally wouldnt even need to think about.

So another chapter is drawing to a close. Went from not needing glasses, to having to register with the NCBI and irishh guide dogs putting in hours of worry about being blind and never seeing again. I often wonder if iit was better to be born blind, not knowing what ya missing out on or to have seen once and appreciate what you have seen, but soul destroyed as its taken away from you? Now being able to see well again.

Things are looking bright for me I hope to return to work within the next couple of weeks, repeat my night course next year, back driving, all the things including my independance that i had taken for granted.

Thanks everyone for reading again.

Oh Mitch- I am sorry I dont know anything really about contacts but I think i will be learning in the next couple of weeks. I will keeo you updated.

tbh

great stuff Heidi, thanks for letting us know!

Johnny Meagher

I've gone and registered in the mean time under this name. guess I was curious about the site and decided I'd fess up!

Hi Heidi_ho, best of luck, I am glad it has worked out for you and you are regaining your independence
never mind the contact lenses question, I'll ask around and after all I am wearing them! I've another check in 3 weeks anyway
i've often wondered myself if it would be better to be born blind or go blind. god what a stupid thing to say. I mean would it be easier to deal with blindness if you were never sighted or not. I think it would be easier (and of course i am sighted and so don't know what the hell I am talking about) to be born blind. I suppose you could say that you wouldn't know what you are missing. but a person born blind is not blind (let me remind you that I don't know what I am talking about, in case there are any blind people listening!). but to say someone is blind is to say that they are "lacking" something, but you can not "lack" something you never had. I just think that all people are complete and perfect in themselves when they are born. a person who can not see is no less of a person, and I don't mean that as a "PC" point but as a philosophical one, one which rejects the idea of "ideals". so I think it would be better to be born blind, that way your world is complete it itself and nothing is lacking from it. I don't know what I'm talking about, being sighted and I'm not saying you asked either!! :P

CathyMoran

Mitch_um wrote:

Heidi_ho, I read your post again and realise that you are looking TO help and not FOR help! so sorry if my "you are not alone" post was a bit patronising. I've been lucky so far, I have had a couple of check ups recently and all it well with my eyes. This is not wholly on topic but I guess you learned a lot about diabetes and eyes so what do you think of contact lenses and diabetes? I've just gone and gotten "monthly disposables". When I went back today for a check up after a week she spoke about spots caused by air bubbles. She said it wasn't a problem as such. I had clued her in from the first about the diabetes. I do want to be able to wear them because I'm getting older and I want to squeeze the last of my looks out of me. I know you are in a very different position to me but well, maybe I am making a mistake. Contacts increase the risk of infection, this type even more, due to any injuries not being oxygenated as much as otherwise. But retinopathy is a different matter. Oh I'm not looking for medical advice! I'm just saying do you think I'm an eegit or do you know loads of diabetics with contacts?

Hi,

just to say that I am diabetic 22.5 years and have been wearing contacts for most of that time, the only reason why I gave up for a while is that I was undergoing chemo for cancer. I would not wear my contacts all the time (just for special occasions) but when I was younger I wore hard lenses in school all day.

robinph

I have been wearing contacts for the past year and a bit, previous to that I was either not totally convinced by the whole sticking your finger in your eyes thing and I also assumed that then as a diabetic it was just not an option. The first optician that I saw was almost of the same view and said I could only wear them one day a week, but since then I have seen opticians from the same shop who were not quite as limiting on how long I could wear them for, and have also made comments to me about their colleagues views as well.

Johnny Meagher

thanks CathyMoran and robinph. well these lenses are designed to be wore full time 24/7 for a month. it's the main reason I went for them, I didn't want to have to poke my eyes twice a day. I have a diabetologist appointment (just a check up) next week and I'll ask about it then also. I'll tell you what he says.

Johnny Meagher

opps, not like me to say "what HE says". so anyway, she told me it was ok to wear contacts, mind she was a junior and asked the nurses. anyway, going back to optician for last check up in a couple of weeks. eyes got a bit tired/sore so have taken them out a few days. otherwise I'm going with them. I mean it's either :eek: or :rolleyes:! hee hee thanks