No where else to go now.!!!!

KATY1

Member
Messages
16
Dislikes
CRUELTY AND ALL ISMS.CONTROL FREAKS AND BULLIES.
GOSSIPS AND BAD SWEARING.
Hello every one.
My name is kay and i would like to ask for your help if you can. Im sure im not on my own with these problems and complications of Diabetes, but there are times when i feel a little on my own.I have had Type 1 Diabetes since i was 13. Im now 51. I have Proliphick Retinopathy in both eyes with Painful Blind eye syndrome, (Registered Blind). I also have Diabetic Kidney Disease, Peripheral Neuropathy,Automic Neuropathy and Chronic Heart Disease. I also suffer with Gastro-Pareasis, had many TIA's and have trouble with swallowing, memory and cognitive problems. All of these problems as you will all know im sure, are as a direct result of badly managed Diabetes. I have also got Lupus and MS.
My big problem is this though; Neither myself nor my consultants can get control over my Diabetes. They have always struggled with it since diagnosis. In 2010 I was finally fitted with an Insulin Pump and i was so proud of my artificial Pancreas that i used to show everyone and tell them how good i wasx starting to feel. It was a bit trickey et first but i soon started to get into the swing of it. Then it all started to go wrong. I had my 2nd heart attack and was fitted with 5 stents and put on asprin and clopidogrel. 3 months later i had a massive bleed in my right eye and a not much smaller one in my left eye. Ive had many laser treatments on both eyes but they cannot stop the bleeding due to my medication.......They took the pump away from me as i was nearly blind.. I was heart broken as i saw this as my last hope. Ive since had another 3 more heart attacks and 3 Cardiac arrests. My future is now grim to say the least. Does any one have any advise about specialist research hospitals
or ANYTHING I COULD DO PLEASE. IM VERY SCARED NOW.
Thank you for listening and im sorry to have gone on about my problems but i just dont know wfere to go for help annymore.
Kay. x
 

WhitbyJet

Well-Known Member
Messages
1,597
KATY1 - a warm welcome to the forum.
My God you really have had a bad time of it, my heart goes out to you. Oh how I wish I could just put my arms around you and make you feel better.
Katy have not ever heard of Dr Bernstein, if has written a book called the diabetes revolution and this has become the bible for many a desperate diabetic person. There is also a forum and by joining you can John in question and answer sessions with Dr Bernstein and his team.
Links are not allowed in our forum but you will find it on Google.
Katy i know eating is a problem but can you eat all those super healthy foods that will support your body to heal itself? The foods that i mean are vegetables and berries and eggs and coconut oil and meat and and nuts and seeds?
I hope that you receive many responses there are some very experienced helpful members in this forum many of whom have gained good control of their diabetes and improved their health.
I never forget my old GP if once said to me 'of course you have hope, everyone has hope right until the moment they stop breathing so get on with things make them better'.
I hope you find the help and answers that you need to help you move on to better times.
Big hug all the best
Judith
 

KATY1

Member
Messages
16
Dislikes
CRUELTY AND ALL ISMS.CONTROL FREAKS AND BULLIES.
GOSSIPS AND BAD SWEARING.
THANK YOU SO MUCH JUDITH. I WILL CERTAINLY JOIN THAT FORUM. MAY I SAY THAT UNFORTUNATLY I AM UNABLE TO EAT ALL THOSE LOVELY HEALTHY FOODS SO THAT MAKES IT ALOT HARDER TO BUILD MY SELF UP. THANKS SO MUCH JUDITH.
GOD BLESS AND TAKE CARE
KAY. X :(
 

KATY1

Member
Messages
16
Dislikes
CRUELTY AND ALL ISMS.CONTROL FREAKS AND BULLIES.
GOSSIPS AND BAD SWEARING.
hello. i eat things like very soft foods like water mash, some soups but they have to be sieved, not fat or meat except fish, complan and some prescription stuff like nutrice desserts and fortisips etc. I often have to manage on lucazade alot though when my blood sugars start to nose duive when my stomach is not emtying. As i have Chronic pancreatitus i have a great deal of trouble absorbing foods as well though i take creon tablets for this. I cannot have vegatables apart from some root veg, Fruit apart from bananas is also a no no. The only option they have given me is what they call a J PEG WHICH MEANS I WILL HAVE TO BE FED A PRESCRIPTION LIQUID THROUGH A TUBE IN MY TUMMY AND THE LIKELY HOOD OF PERTONITUS IS HIGH. sORRY ABOUT MY KEYBOARD SKILLS. I STILL MAKE A MESS OF TYPING SOMETIMES BUT IM GETTING BETTER AT IT. (hese capitals dont mean im shouting. sorry)
Katy.x
 

ebony321

Well-Known Member
Messages
1,299
Dislikes
Tomatoes, Rude people, Bees!
Hi Katy,

My heart goes out to you, you sound like one tough cookie thats for sure!

Don't apologise for speaking about your problems, that's what the forum is here for!

I have only had diabetes for almost 3 years, so no complications... But i do know what it feels like to not be able to get control, then be given a wonderful insulin pump.

I cannot understand why they would take it away because your registered blind? I can only assume you have some help with your health problems, so i would have thought maybe helping you with your pump could be tied into any carers or assistance you have? especially as poor diabetes control will only worsen your other health problems.

Have you tried contacting your PCT about this? that the pump was so beneficial for you that extra steps and arrangements should be looked into so you can still have an insulin pump, if you got the hang of it before, then you could simply arrange for somebody to do the techincal side for you such as changing cartridges and altering your basal rates and bolus amounts??

It really does seem like if you could get the insulin pump back you could improve some of your complications thus improving your life and mood as you seem so terribly lost as to where to turn next.

You have already braved so much and i hope things improve for you, i'm sorry i couldn't be more help to you. Keep up hope and be as positive as you can Katy.

All the best xxx
 

IanD

Well-Known Member
Messages
2,429
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Carbohydrates
Dear Katy,

My heart goes out to you - I woke several times in the night & my first thoughts were for you, & I pray in the name of Jesus for you that he will give you the help & encouragement you need.

I don't have eating or digestion problems, but I do eat a lot of ground almonds in various recipes which you may find soft & nutritious-
a porridge with soya milk;
buns made with gr almonds, baking powder, egg & other non-carb ingredients - they soak up liquids instead of bread.

Love & hugs & prayers

Ian
 

KATY1

Member
Messages
16
Dislikes
CRUELTY AND ALL ISMS.CONTROL FREAKS AND BULLIES.
GOSSIPS AND BAD SWEARING.
Hello Ebony and Ian,
Thank you so much for your replies.
Ebony; Ive ordered Dr Bernstein's info on Diet and Diabetes. Im looking forward to it arriving. His Website is very big and interesting. There's alot of info to take in.
I wish i could get some kind of control as my Cardiologist as told me that i cant have the much needed Bypass whilst my body is in this state. I don't know, I get on my own nerves, :lol: . I think i might be an alien from another planet and i may be fine if im sent back there.
Ian; Thanx for your prayers Ian, I really do appreciate them. Im afraid i cant eat the foods you mention, at the moment any way.
Thank you,
Katy1
 

anna29

Well-Known Member
Retired Moderator
Messages
4,789
Type of diabetes
Type 2
Treatment type
Insulin
Dislikes
Cruelty to Animals/Children
Liars/Manipulators/Bullying
Hi, when was reading your story KATY the 'footprints in the sand' came to my mind.
Trust and believe that as poorly as you are, the lord will carry you .
I do this when it all gets too much for me .
We are sustained and carried when things get heavy going.
Much love,thoughts and prayers.
Anna.x :D
 

KATY1

Member
Messages
16
Dislikes
CRUELTY AND ALL ISMS.CONTROL FREAKS AND BULLIES.
GOSSIPS AND BAD SWEARING.
Dear Judith,
Thank you for the link that you have sent me. I would also like to thank you for your prayers as well. Bless you, and you too Ian.
Thank you
Katy x :)
Ive just noticed your post Anna. Footprints is such a lovely prayer and its always made me cry. Today is no exception. Thank you so very much. You really are ALL such wonderful and warm people.
Thank you
Katy xx
 
C

catherinecherub

Guest
Hi Katy,

I have been thinking about you a lot since your original post appeared on the forum.
I will echo what others have said and wish you well and hope that your health improves.

I have been asking myself what I would do in your position and hope you don't mind me putting my thoughts down for you.

Have you considered asking your G.P. for a second opinion or a referral to a Teaching Hospital with an Endocrinology Dept? These types of Hospitals are heavily into research and keep abreast of all treatment options and may be the place you need to be seen. This would probably involve travelling and I don't know if that is a possibility for you. This is a typical example,

http://www.bartsandthelondon.nhs.uk/our ... /about-us/

I would be concerned about the treatment option offered in the link that has been provided as it goes against conventional advice for a diet low in fat and fibre. It also does not think that an insulin pump should be used and yet you are trying to research one that would be suitable for you.

These are my thoughts and opinions and I hope they may be of some use to you at this difficult time.

Take care Katy and God Bless.

CC.
 

Snodger

Well-Known Member
Messages
787
Another good place for cutting-edge diabetes research and treatment is King's College Hospital. They are doing good things with pumps as well I believe. Also in London though... travelling may be a problem.
 

phoenix

Expert
Messages
5,671
Type of diabetes
Type 1
Treatment type
Pump
This is a website of a lady with T1 who has severe gastroparesis and has undergone enterra therapy , (vagal pacemaket) she includes a list of specialists in this area from the UK under contacts.

http://www.gastroparesis.org.uk/
 

Unbeliever

Well-Known Member
Messages
1,551
Hi Katy, Very sorry to hear of all your dresful problems. There must be some help available out there.
Probably a silly question and may have been mentioned already. but have you thought of contacting Diabetes UK? IPerhaps they could point you in the right direction?