Furness Area's Insulin Pump Support Meeting!

I've been trying to find some kind of support group that is local to me for some time now and the other day, I recieved a letter from the NHS inviting me to Furness 1st Patient support meeting for Insulin Pump users; its like they've heard me!

I actually don't know anyone in the area that has an Insulin Pump so I am secretly looking forward to going to thsi meeting, if only it is too hear other peoples experience with the pump and see if they go through some of the same things that I do with it. It is in my home town which makes things a lot easier for me so I dont see any reason why I shouldnt go along. 

It also states on the letter than anyone can attend, even if they are just thinking about getting an Insulin pump. This to me, sounds like Insulin Pumps are a bit more accessable now a days as when I was started with the process this time last year there was a lot of criteria that you had to met before being able to be funded for one! I think that it is great that more people are able to get them for whatever reason; they obviously don't work for everyone but I'd be lost without mine now!

I'll blog about the meeting when I've been. It's in July so a little while off yet, and Ive got to book my place so hopefully I havent missed out; its on my to-do list for tomorrow!

To pump, or not to pump?

Extremely excited to be going on holiday again this year! Turkey in Spetember with my older sister and a friend is certainly needed and I cannot wait until it finally gets here! Sun Sea Sand, what more could I want? Now the only problem being, do I take my insulin pump with me, or leave it at home and have a "week off" (sounds like heaven right about now but thats a different blog!)

Obviously there are advantages and disadvantages of taking it with me and not taking it with me, but seeing as though ive only ever been abroad and injected insulin I think I know which I would rather do, however, lets look at the pro's and con's in my eyes.

Pro's to using the pump when abroad 

Im used to using the pump now, and it is really second nature. I am sure that it would feel completely strange to not be using the pump for a whole week. 

I have much better control on the insulin pump than on injections. My blood sugars are much more e stable and I very rarely have hypo's now. Having hypo's abroad for me are always worse because the sun does funny things to my blood levels!

There would be no hassle in having to sort out correct doses to have with my injections! It would take sometime to make sure that I was taking the right doses which could take time into my holiday to sort out!

Con's to using the pump when abroad     

Having something attached to me whilst im wearing a swim suit or sunbathing isnt something that appeals to me. That may sound shallow and im fully aware of that but I am a young girl and appearance matters.

I would be constantly be worrying about whether my insulin was getting to hot in the pump. This is something that I am normally paranoid about with injections abroad. I can imagine that it would be quite difficult to keep the insulin at the right temperature when the insulin pump will be in the sun at all times.

I dont know how much infomation there is about insulin pumps abroad and if anything went wrong with it whilst i was out there it would freak right out!


I'm still so unsure, and I know that it is a long time away but I need to get sorted long before in order for me to feel okay about it!  Any advice welcome!  

Finally, after trying for what seems like a long life time now, I have finally got somewhere with regards to my hideous Lypohypotrophy and I am beyond happy right now! 

After having it out with my consultant after a clinic meet up one day he said that he would refer me to someone at Royal Preston Hospital to have a better look at my stomach and someone who had more knowledge in the area. I was so nervous before this appointment it was unreal!

The outcome of the appointment was that I do have a severe case of Hypotrophy and because my consultant has referred me to a plastic surgeon within the NHS I do get it fully funded! The only problem is that I have to lose 2 and a half stone before I can have the surgery, which is going to be difficult but I will do it! I am so happy; some people will see it as me being vain but this is something that I would not have had to have put up with if I wasnt Diabetic and hadnt had to inject large amounts of insulin 4 times a day for 9 years.

So by December I need to be able to show the surgeon that I have lost the majority of the weight and that I can keep it off. All being well, I should be having a tummy tuck in 2013.

Pump Update

Seriously having problems with the whole pump issue and I am contemplating having it removed and going back to injections. 

I have been in hosptial more times in the past 8months of having the insulin pump than I have in the past 9 years of injecting, and all because of silly little things like it disconnecting from my skin during the night and me not realising it until the morning when Im throwing liquids up and my keytones are throw the roof! I don't know if it is worth it really; it seems to be happening every couple of months and the whole hospital routine where I live is terrible for any Diabetic, especially a diabetic with an Insulin Pump!

I have clinic at the end of May so going to discuss my options and see what they say.

New Year ... Finally

HAPPY NEW YEAR :) it's late I know but better late right?

Christmas with the insulin pump was great. Made things so much easier as Im one of those people who eats little and often, so pumping makes that so much easier compared to injections! Medtronic were great too; coming out with supplies when I made my first ordering mistake! Never again. 

I worked alot over christmas (cafe assistant) and Im still having the same problems of going hypo half way during my shift. Really frustrating. I keep forgetting to change my basal rate before i start my shift. Because my shifts arent set and I dont know when I will be working its not something that I can set up before hand. I have the worst memory ever apparently. Not a good sign in a Diabetic! When I do rememeber to temp basal, then my shift at work goes smoothly, as Ive got the right percentage (85% seems to work).

Something that is becoming more frequent now is my insulin pump becoming disconnected during the night whilst sleeping. The first time it happened was bad; I had work in the morning which I had to cancel, and my BM's were HI for about 5 hours (must have been disconnected for a good few hours). Its happened again now (twice) and im constantly waking up in the night to check that Im still "hooked up". Any suggestions to make this NOT happen are gladly welcome. I need a decents nights sleep!

Was back up at the Pump Clinic just after christmas, and I had had enough. I made sure that I saw my consultant (which is something that doesnt happen all the time) and i quizzed them about my lypohypotrophy situation, making it clear that I wanted some form of answer. Amazing what persistance and confidence can do. They have finally admitted that I do have a very rare and extreme case and that something should have been mentioned early, and have now agreed to have me referred to a specialist in Preston for me to have a chat with and see what they suggest. It may not be all paid for on the NHS but it is a big step in the right direction! (see other blog for infomation).

So overall, looking forward to an exciting year! 2012 - first full year with my pump, hopefully getting those HBA1C's down to a reasonable level, and possible abit of corrective surgery? Bring it on!

Laura

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.