Pump Update

Hospital time today. Have to go every 2 weeks for the time being until I get all my ratios right and the right bolus rate too. The first one was really useful as I had little things I was unsure of and needed to get straight in my mind and I filled the hour appointment up with 5 minutes to spare. They never changed anything the first time even though there was a clear sign my bloods were rising every day before dinner and then dropping at tea. I wanted to do something then but they told me to leave it. So I did.

I went back today and I was literally there for 15 minutes! What a waste of time! I missed a tutorial at UNI to be told that I was doing great and to carry on with what I was doing. I didnt expect there appointments to be so relaxed; before I got the pump they told me there would be intense contact with the hospital for 22 weeks but so far I havent witnessed the "intensitity. I was a bit miffed really; my bloods are still rising at dinner time and I think that I need to change the ratio at breakfast time to correct this but my DSN has told me not to change anything myself. Highly annoying!

I'm thinking of just changing it myself even though she has told me not too. At the end of the day, I can see that something needs to be done and I think that I understand the pump well enough now to know what I need to. Bad idea / good idea guys? Let me know!

Lypohypotrophy .. My problem

Since I've become diabetic 11 years ago I have had major problems with my injections sites. At first when I injected I could just feel small lumps under my skin that were sometimes painful but I could masage then out. I told my DSN and it was her that suggested masaging them and then changed the length of my needles that I was using.

11 years later and I'm in the position of speaking to a plastic surgeon about liposuction or in the extreme case a tummy tuck. Going through my teenages with a big "pouch" on my stomach and lumps on both and arms and both legs was to be honest, hell. My stomach looks hideous and getting changed for PE in a room full of girls was my worst nightmart. I use to try and make sure that I had my PE shirt under my uniform so noone would see. Swimming lessons (even though they were in Junior school) are also a painful memory for me. We were at the age where we all more interested in how our bodies look and being in a skin tight swim suit defiantely didnt help matters.

My mum knew how much it was upsetting me. Im not a skinny girl, I am overweight but I like to think that I am in proportion. But standing in front of a mirror and standing to the side my stomach just looks like its stuck on. I have to "dress" it; choose tops that are of a looser fit or tops that come in under my chest and float down around the stomach area. I can never find a nice dress that im pleased with, as my stomach just seems to ruin everything I try on.

My mum realised how much is what getting to me and how I was holding back in certain things so she made arrangements for us to go and see a private plastic surgeon. We had tried numerous time to get referred through the NHS but my DSN refused point blank.  My DSN had also never told me about Insulin Lypohypotrophy either. Half hour into the private appointment the surgeon had told me all about LHT and had said he has only seen a few people with it as bad as I do; its rare.

Back to diabetic clinic we went and sat my DSN down and brought it to her attention. I wasnt happy that she knew about LHT and hadnt bothered to tell me about it, or even suggest that I could have had it. And still she wouldnt refer me to see anyone higher in the hospital. Highly frustrating and upsetting to say to least.

So as it stands at the moment, with me using the pump, nothing has changed! I havent injected in my arms for around a year now and I still have lumps. This isnt enough evidence for the NHS however and they still dont want to know. Apparently if I leave it another 6 months and my stomach is still there then I may have a case. my parents have said they will pay for me to have it done privately, but it would be nice for me to fight for it on the NHS. I never had a stomach before I was diasgnosed T1, so it is purely injection/insulin based.

This is a personal thing for me to talk about and if anyone out there is in the same boat or knows someone in the same poistion, please please please get in touch.

Stigma

Someone's blog I've read recently really interested me, so Ive decided to follow the same subject and give my opinion on the matter. The subject being diabetic stigma; the ignorance and the annoying and irritating comments people make when they think they understand.

1. not being able to eat chocolate.

I'm not allergic to it, so why shouldnt I eat something that I enjoy (a little bit to much). I was to cut out choloclate because im diabetic, then where would it stop? Biscuits? Fruit Juice? Birthday cake? Alcohol? I try and explain that I'm allowed what I want in moderation, and aslong as I make the correct adjustments I'll be fine. Then comes to funny looks *she's not looking after herself*. Pet hate!

2. diabetic because I ate rubbish when I was younger

i got a lot of stick at school (senior) because of the other kids blaming my diet for the reason I got diabetes. And no matter how much I tried to explain it's majorly down to genetics they still made comments and stayed misguided. I would love to go into schools and explain to children what type 1 diabetes actually is.

3. blood sugars high? automatically means you are a bad diabetic

I cant talk for anyone else but I know that sometimes diabetes throws me a high BL and for no reason at all. If someone asks, Ill tell them. I instantly get "oh you must have done something wrong" "your a bad diabetic". One high BL in a long time doesnt NOT mean Im not looking after myself. I could have an underlying infection, or some insulin hasnt been absorbed properly.

4. biscuit? biscuit? biscuit? oh sorry your diabetic, you cant have one!

The worst of the bunch. Someone else making the decision for you. If this happens I normally grab one anyway, whether I was going to have it or not, just to prove a point. It links with the first point. Don't presume. Im diabetic, I eat, I eat things I like, just like you do :).

5. can you catch diabetes?
Yes, I have been asked this. More than once. And it frustrates me every time! Sometimes, I say yes, just to see the reaction. Stupid question requires stupid answer. How can they even ask if it contagious? The amount of people that have type 1 or type 2 diabetes in the world, wouldnt everyone be contaminated? Clearly there minds don't think that way.

2 weeks in ...

Cant believe its been two weeks since I got the pump now! Time has flown by and it has been a lot easier than I thought that it would be. Ive done 4 set changes and changed the insulin twice now and everything seemed to go fine. I was really suprised as how much I remembered and how it seemed to be kind of second nature already.

I had a little problem with one set change. As soon as I had inserted it i knew that there was something the matter; the pain was unreal when ever I bent over or pulled the tubing. I left it for a couple of hours to make sure that it wasnt just hurting because I had just inserted it but the pain was unbearable so I took it out and started again. I realised that I had inserted it the first time whilst I was sat down which your not suppose to do. I know for next time.

I had a appointment at the hospital with my DSN. I woke up in the morning with a blood sugar of 22.1; alram bells ringing! Got the clinic and it was higher still. Turns out I had a kink in the tubing that I hadnt realised so no insulin (or very little) was getting in! Changed the set and within an hour my level had dropped to 7.9; i felt terrible for it dropping so fast.

Overall my bloods have been so better than they were before so Im hoping that my HBA1C will be a lot lower when I get it tested in the new year!

Pump Time!

Sat here writing this with my new insulin pump! Also have a really bad headache, there was way too much infomation to take in, and a 3 hour appointment with no break was hard going! I've only got it with saline at the moment but im still so paranoid about doing something wrong!

The pump I have is a (purple) Medtronic MiniMed and so far, is pretty straight forward to use. I think that I picked up things pretty quickly and my DSN and Pump Rep seemed impressed. Saying this, Ive just got home and have been practising inputting blood sugars and grams of carbs and was a bit unsure! Guess this gets easier with time and practise!

Got some cool skins for my pump if I want to put them on; picked one with a jelly bean pattern on it, mainly to amuse my little cousin who is so so so interested in all of this!

I was a wreck this moring; I didnt sleep at all last night and my mum must of thought that she had done something wrong the amount of times I snapped at her. It didnt help that she was nervous as well so was talking a load of rubbish all morning.

So overall verdict; so far so good. Nowhere near as bad as I thought that it was going to be and the pump isnt as comlicated as I expected.

On another note, my cousin has just been diagnosed with Type 1 Diabetes at the age of 17. He's taking it all in his stride it seems and doesnt seem to phased by it. I'd love to be able to do something with the hospital that helps families when their child is diagnosed? If anyone knows how I can go about this then let me know!

On Countdown...Tick Tock

12 days to go, and defiantely counting! Beyond nervous, not sure there is a word for that!?! Im totally still not in the rightframe of mind for it, and I cant get excited about it. Any ideas are welcome :-)

Tried finding some people to talk to who are currently "pumping" but the conversation tends to last a day and then we dont talk again, which is sad (and a little infuriating). Ive still got loads of little itty bitty questions that I want answering!

Saying that though, I have had some great advice and support from the people off a diabetes forum that I am apart of. I'd recommend it to anyone, not just diabetics but for people who want to learn more about diabetes or live with someone with diabetes. Link to follow > 

http://www.diabetes.co.uk/diabetes-forum/index.php

This week has been a bad week anyway, fell UP the stairs and messed my thumb and wrist up, so cant drive and cant work, which is only given me more time to think about the up and coming appointment! Feel stupid talking about it to people around me, kinda feel like they dont understand.

Going to keep positive about it though, more than likely it's going to help me tons!!

First Steps.

This blog isn't really Insulin Pump related, but relates to diabetes (as everything normally does in my life) so I thought, why not share it?

First holiday away without the parents; a really daunting thought for me anyway, without putting diabetes into the equation. Major issue with airports, but thats another story! Im pleased to say i survived (of course I did) and had zero problems. I really dont know what I was worried about. I know what Im doing, Im aware insulin sucks when its hot so keep it cool when you can (I never took my injections out of the hotel room, they stayed in the fridge the whole time!) and that heat can effect blood sugars, but I think I dealt with everything fine! If any one reads this (doubtful) that is worried about going away, dont. Seriously, it's fine, if I can do it, then I'm going to say that anyone can!

I had a fair few hypos when I was away, which is a really strange feeling for me ow as I hardly get them. Had a 1.9 at one point which was scary; I got myself from the side of the pool and up 7 floors without remembering how I did it!

Pump Update!
Nerves are kicking in more than every now. Im starting to (again) doubt whether this is really what I want, as I normally like taking the easy option, and this is far, far, far from easy in my eyes! But, (again) I've got to give it a shot and at least see if its for me. My nurse said that she isnt aware of anyone who has had one and hasnt liked it, but saying this, I'm the thrid person in the whole of Cumbria to be getting one, so its a not a huge group of people she is talking about!

Laura

Hello World!

My first ever blog!!

I decided to write this blog when I found that I was going to become an Insulin Pump user, as I found it really difficult to find someone to talk to about the process and there feelings on the matter! I am certainly no expert on diabetes nor do I pretend to be, but if my blog helps put at ease just one person, then I'd be happy :)

Ive been living with Type 1 Diabetes for 10 nearly 11 years now, only being admitted into hospital once (I think thats pretty good). I've had a pretty tough time with diabetes with one thing and another not going my way; regime after regime now working, high blood sugars for no reason, low blood sugars for no reason, lypo-hypertrophy and so on. So when my DSN mentioned an Insulin Pump my Mum thought it was a great idea. Me? Not so much.

The idea completely freaked me out. Having something attached to me all the time, having something under my skin? No thanks. To be honest, I'm still not sure how I feel about it now and I've got my appointment for the beginning of November to get it fitted! The pro's definately outweighted the cons for me getting it though, and the people around me and the nurses at the hospital thought that it was for the best, so what did I have to lose? At first I was totally against it; injecting has never really bothered me so it wasnt about not having to inject. Ive come round to the idea a little more now.

Blood tests all came back clear and I fitted into the criteria for the pump so thats it now :) 10th of November I'll be a pump user (Saline first). I don't know what to expect, but I guess everyone feels like that? 

This is my first blog so apologises if it comes across bad. I don't know what people will think, but its helped me writing it down, because I want it to be read by people in my position, who know what I feel.

Laura