Thursday, 25 November 2010Just a very short one today. I've just finished having my first ever Thanksgiving dinner, with my adopted american friends. This was a wonderful evening with good food and good company.
So with that in mind, I want to say thank you to my 'real life' friends and family. You are all terrific people who have helped me, encouraged me, badgered me when necessary, and much, much more.
You've learned things for me, you've carried glucose tabs in your pockets for me. You've fundraised with me. You've listened to me moan when I've needed to, and gone far and above the call of duty, and I'm so grateful for you.
You are amazing, and one of the greatest blessings in my life. I love you all.
Wednesday, 24 November 2010It's 4:30am this morning, and the alarm on my mobile phone is going off. I know exactly why, because I was doing exactly the same thing two hours ago. It's testing time.
On with the light, fumble for the meter, open the test strip bottle, and....
Ah man. Test strips all over the bed. Fantastic. That's going to be fun to get back together.
Why am I testing at 4:30am? Same reason that I'm testing every two hours for the next fortnight. Yesterday, I started on my pump, and my team have asked me to do this in order to get my basal rates sorted. So it's not going to be a whole lot of fun, because there's not a lot of sleep going on there. However, I would rather do this now, and get it right, rather than having to be chasing my tail a few weeks down the line.
But it's only day two of fourteen, and I'll be honest. I'm already tired. Like I said the other day, I've not been having great sleep recently, and my tank is running more towards empty. But it's time to power through, and hit the ground running.
Because for any complaining and griping I might do within the next fortnight, I know that I am extremely fortunate. To have access to pump therapy is an amazing opportunity. But even if I didn't have access to it, I would still consider myself fortunate.
If ever I feel down about the state of things, I think about the amazing work done by Dream Trust, and how so many people with diabetes are in situations like those of people the trust works with. How it could just as easily be me.
I think about life before the 1920's. Before the discovery of insulin. How a diagnosis of diabetes was tantamount to a death sentence. How incredibly blessed we are to have access to insulin at all.
So, just let me clean up all these test strips off the bed, then...
Tuesday, 23 November 2010It's day two, and when I started thinking about a couple of conversations I had yesterday, it became very obvious what I wanted to talk about today. Well, I say what, but I really mean who.
I'm all about the people. I take my friendships very seriously, and once you've got me, you've got me for life. I'm like a bad penny. Or possibly something more flattering, if I'm feeling a little nicer about myself! You do lose contact with people along the way in life, which I always find deeply saddening. The thing with really good friendships, though, is that you can usually step right back into the rhythm.
Over the past year and a half, I've been so blessed to meet a whole range of wonderful people. Today though, I want to think about how amazing it has been to know two in particular.
First up is someone that a lot of you out there in the DOC will know quite well. If not, then my question is why not?!
I've come to count the wonderful, charming, and lovely Ginger Vieira as one of my best D-friends. And do you know, I have absolutely no idea how we 'met' in the first place!
Ginger is one of those amazing people who makes me feel like I can do absolutely anything. She's funny and encouraging, and extremely talented, in many different areas. Did you know she used to do improv comedy, for instance? If you've seen her 'duct tape' vlog, that's a prime example of how hilarious and funny she is.I can't wait to read her book!
Skype is a wonderful thing, and we've had some lovely talks over the old interwebs. Every one though makes me wish we were that bit closer to the wonderful transporter device we've been planning to create.
Closer to home, I've also been fortunate enough to meet another fabulous person, who makes me laugh so hard that last night my laughter actually disconnected our phone call. Strange story, but a true one!
Shelley is the mastermind behind the UK Diabetes Support network Circle D, which helps 18-30's with diabetes meet, socialise and support each other.
The woman is mad as a box of frogs, but an absolute genius. She has so many balls in the air that I genuinely have no idea how she juggles them all and still manages to keep her sense of humour. When she takes over the universe, I want a place in her cabinet.
And of course, I never would have met either of these wonderful ladies if it hadn't been for diabetes. Tell me that that doesn't make me blessed?
Monday, 22 November 2010So I went quiet again for a while there. It's been turning into a bit of a problem lately. I think it's due to feeling a bit swamped with both work and work for my Masters'.
I'll be honest, I've also not been sleeping particularly well. I've had a string of high levels lately, and coupled with the cold, it's been playing havoc with my sleep. So obviously, I've not been at my most chipper. So with that in mind, I want to say thank you.
The wonderful and lovely Mike from My Diabetic Heart has declared this week to be Diabetes Blessings Week. So my first thank you is to him for what I think is a fabulous idea. Counting our blessings is something that it never hurts to take time over. So with that in mind, I want to cast my mind back a bit.Every now and then, I like to think about how far I've come. I remember a time, not so long ago, when I didn't know the language of basal, bolus, and A1c. I didn't know how to order prescriptions. The thought of injecting myself was utterly terrifying.
And now? Well, I'm not the world expert on any one thing, but I like to think that I know my way around. I've been extremely blessed to have access to a lot of really good education, and supportive medical professionals. I know what I'm doing. I've managed to get solid HbA1cs since my initial high ones post diagnosis. Judging by the fact that I'm still here, I've learned how to inject, and managed to do it.
In this situation which I never wanted, I've managed to come out ok. This happened at a time in my life where I was in an area with a well managed NHS budget, when I personally was able to absorb the important information and use it to make positive changes, in terms of diet, exercise, and life. If this had happened a year earlier, I'd probably have seen things go very differently.
And please don't get me wrong. This isn't me saying that things have been easy. That would be a huge monster of a lie. They haven't. They've been VERY difficult, and I've put a lot of hard work in. This also isn't me going 'Haha, look how easy I've had it compared to you!', because that's not true either. I'm not bragging, or rubbing it anyone's face. I know how hard you all work, too.
The truth is, I've been blessed. And I count myself to be very, very lucky indeed.
Thursday, 4 November 2010I know a lot of people today will probably be thinking about where they were and what they were doing two years ago. It was a historic day, and one of those 'where were you?' moments. As for me, I know exactly where I was. But as thrilled as I was by the results of that night, this isn't about politics.
I was at my parents' house, having literally jumped on a train to come back home. I would have gone to extremely long lengths to get there, and it almost led to me quitting my job at the time. It was the day I said goodbye to my oldest friend.
I was on my own the night I found out that she had died. My phone had broken, and it took me buying a new one, and picking up a voicemail from her sister to find that she wanted me to call her. Though I couldn't get straight through, I knew in my heart of hearts what had happened. It was freezing cold, when I got through to her, and I very nearly sank to my knees outside the bank when I actually heard the words.Pam met me first when I was maybe six years old. A good number of years older than me, she was my brother's guitar teacher. After he gave it up, she was my guitar teacher, then my singing teacher. She understood me and encouraged me in a very different way to everyone else in my life. She believed in me, and I never knew her once to doubt me, or raise her voice at me, despite my being a very frustrating student. We were more than student and teacher. All the while, she was one of my closest friends, and we loved each other. We clicked. We had loads of the same interests, and she had every faith that I could do whatever I put my mind to. She helped guide me through the early stages of my walk with God, and a thousand other things that I will forever be thankful for.
On 4th November, 2008, after running full sprint through York city centre to jump on a train, and change out of my work uniform in a still moving train's toilet, I was among the many others who gathered to say goodbye to her.
Monday was the 1st November, which marked my 1 year and six month mark of living with Type 1. And unlike last year, all I found that I could think about was how much I missed Pam. Possibly because of the whole media circus surrounding the US midterm elections, I don't know why, but all I could think about was how much I wanted to talk to her.
I remember our last conversation, which was on my mobile phone, whilst I was sat in an otherwise abandoned car with a completely empty petrol tank. I was on tour with a small scale touring children's theatre company, and whilst we were en route to our afternoon show, our fuel had totally run out. My touring partner (and really good friend) had gone to try and hitch-hike to the nearest petrol station, and left me locked in the car (I don't advocate this strategy to anyone else, for the record). The high winds from up in the hills were rocking the car back and forth, and I was nervous. So I called Pam for a chat. She was in bed, ill, but we talked for a good half an hour until he got back with a can of petrol.
If I had known that the last time we talked would have been the last time we'd talk, I would have said so many things that I didn't. How I would forever be thankful to her for how she had taught me how to be a better artist, a better Christian, and a better human being. That I loved her, and felt privileged to even know her, let alone consider her one of my best and closest friends. Of course, I didn't know it would be the last time we talked, and of course, I didn't say those things. I like to think that she knew, though.
Pam had serious chronic health problems, and had her whole life. She was born with spina bifida, and had many complications because of it. She had an amazing life, and accomplished so many things that it makes me feel lazy. Even in her worst periods of health, she was gracious and loving, and full of life and humour. To me, she was the epitome of a Chronic Babe.
When I was diagnosed in May last year, she was the one that I wanted to talk to. The one I knew would understand, and that I could say absolutely anything to. But of course, I couldn't. I've wanted to talk to her about things at least once every week, but usually more. But of course, I can't. And of course, I still want to. I wish I could talk things out with her. I've wanted to bend her ear over the whole pump issue, for instance. I've got to console myself with what I think she'd probably tell me.
I wonder sometimes what she would think of me and the way that I've handled things. I like to think that she'd be pleased with my transition from total newbie to knowing my way around things. I know she'd be pleased in my keeping this blog. She was a wonderful example of a pre-internet advocate for all sorts of health issues. If she'd been online, she would have been one of the movers and shakers - that I know without a doubt. It's a shame she never owned a computer, really.
I'll never know the answers to those questions, though. Not in my lifetime. All I know is that I loved her, and that right now, I really miss my friend.
Tuesday, 26 October 2010Here's a blast from the past for those of you who read from the UK, and something to boggle the minds of those of you from elsewhere in the world.
Who remembers Going Live? Ah, Phillip Schofield when he still had colour in his hair, and of course the national institution that was Gordon the Gopher. Saturday morning kids' TV at its 'finest', in that wonderfully tacky late 80's and early 90's glory. Happy days.
So whilst I want to talk about going live, it's not that going live. Maybe another day?
I've been given my date for going live on the pump. Over the phone, I'm still waiting on the letter. But it looks like my 'plugging in day', as the clinic admin told me on the phone, will be Tuesday 23rd November. Wow. That's soon. I'd been thinking that it would have been in December, and pushing it to be happening before Christmas. Stranger things have happened though.
In the end, I had a choice between three - the Accu-Check Spirit Combo by Roche, the Paridigm Veo by Medtronic, and the Animas 2020.I know how lucky I am to have a choice in the matter, so I spent a long time thinking about it before making my choice. Or at least I think I did. Andrew seems fairly certain I made my mind up pretty quickly, and just didn't want to commit to having made a decision.
Well, despite having some rather 'interesting' information told to me by the three reps, at an hour that I'd much rather be having my tea/dinner (depending on your part of the country), and the hours of contemplation, I did finally make a decision.
I've gone with the Animas 2020, in 'it goes with everything' black. I was torn, colour wise, but came to the conclusion that I could always get skins for it.
In the end, the Animas just had an awful lot of features that I liked. I enjoyed the fact it had a customisable database, the low bolus and basal incriments, and I just liked the aesthetic. The screen was large, clear, and didn't remind me of a late 80's text adventure game. The fact that the Paradigm Veo is CGM ready was something that was holding me back, but after a frank discussion with the DSNs, it seemed that with the way the country's funding is being 'handled' at the moment, the chances of sensors being available more freely within the four years I'd be tied to the pump are so slim as to make it rather a moot point. So with that not really an issue, the Animas won out for me.
There were 8 or 9 people in my initial pump meeting, when we met with the different reps. It seemed a mixed group, and I don't think everyone was necessarily convinced about pumping full stop. So it will be interesting to see who comes back, and which pumps they choose.
I'm not sure how I'm feeling about it all, to be perfectly honest. I thinking having the choice of pump has helped me feel a bit more in control, and I'm certainly more convinced that I was to start with. I just need positivity about the whole process, which I've been getting for the most part from wonderful people on Twitter, and in the real world as well. I know as it gets nearer, I'll become slightly terrified, because that's just the way I am. I just need to get over that initial first hurdle.
Thursday, 21 October 2010A few weeks ago, I found myself listening to one of my favourite songs of all time. That's 'Mrs Robinson' by Simon & Garfunkel. A classic if ever there was one, in my opinion. Now, I normally pride myself on being fairly good at really listening to song lyrics, and thinking about the meaning - that's why they're there after all. But as I sat there listening to the song, I realised I'd never really listened to the lyrics. And when I did, I found the song taking on a whole new meaning. I'd never properly clocked that it was supposed to be about a woman dealing with alcoholism. Neither, it seems, did most people that I'd asked.
Now, I know this doesn't seem like I'm going anywhere with this, but get on board and go with me - I promise there's a destination!
The line which I found myself being drawn to again and again though, was the line about Joe DiMaggio:Where have you gone, Joe DiMaggio? Our nation turns its lonely eyes to you.
I poked around online for a while, and found an analysis of the lyrics (which was really interesting reading). It talked about this part in particular. How DiMaggio himself had been confused by it. As he said, he hadn't actually gone anywhere, so what was it referring to?
The analysis says how DiMaggio was considered "the quintessential secular American hero-savior", who was widely idolised, was handsome, charming, talented and 'got the girl'. He was a pop culture hero, who was fading from the spotlight as he stepped back from baseball.
So where am I going with this? Well, at the time I was thinking about this, there was an awful lot of talk of how every time diabetes was talked about in the public eye, it was all negativity. When I wrote my review of The Hospital, I addressed some people's complaints that there was not enough coverage of people being responsible and doing amazing things whilst living with diabetes. As I said, it wasn't the place or the time, and it certainly wasn't the goal of that show. But the thing is, there are so many people living with diabetes out there who are doing amazing things. There are people taking on incredible challenges. Look at Team Type 1, look at my wonderful friend Ginger Vieira, who is a total inspiration to me. Look at all the others forming the list that's so long it's ridiculous. But then do something else.
If you're living with diabetes, whether it's your own, or your loved one's, do something for me.
Look in a mirror.
Go do it now. I'll wait.
What did you see? Not sure? Well, do you know what I see?
I see a hero. I see someone who doesn't have it easy, but who is still here. Who hasn't given up. You're doing amazing things - whether you're climbing a mountain, or remembering to test - you're Joe DiMaggio. And our 'nation' turns its lonely eyes to you.
Saturday, 16 October 2010At the start of November, I will have been doing this whole diabetes thing for a year and a half. Whether you think that's a long time or not is, I think, a matter of perspective. You can accomplish a whole lot in a year and a half. To channel my musical theatre nerd for a moment, let us consider Rent. There are many ways in which you can measure a year. They suggest a whole variety of things, but also measure a year as 'five hundred twenty five thousand, six hundred minutes'. So half that again would be... according to Google.... 788 923.149 minutes. Yes I googled it. That's far too much maths to be doing in my head on a Saturday.
My point being that if you look at a time like that, it suddenly seems like an awfully long time. On my part, dealing with T1 has become such second nature in a lot of ways that it feels strange to think about 'the time before', because that's almost like another person these days. But that's how I look at it. Other people will see it differently. And that's what I really wanted to talk about.
So I have Type 1 Diabetes. Big revelation there, but it's true. I was diagnosed at the age of 24, and apparently 'well past' the prime age for T1 diagnosis. It does seem that T1 is thought of by many as a 'kid's disease', being that yes, the prime age bracket for diagnosis is childhood, and for heaven's sake, it used to be called Juvenile Diabetes. What does that mean for the rest of us? Kids with T1 grow up. Adults get diagnosed with it too. I know I'm not the only one who was diagnosed outside of childhood or puberty.
I remember being in hospital after being diagnosed. A doctor (who is now my consultant) came and asked me if I wouldn't mind talking to some medical students. Because I was 'unusual', and they 'almost never got someone being diagnosed outside of childhood.'. I was put on metformin as well as insulin at the hospital as well. Because I was clearly in DKA, but they still weren't sure I was a T1 for a couple of days. Because I was 'too old'. This did make me feel just a little bit like there was something wrong with me. Apart from the whole broken pancreas thing, obviously.
Like I say, I know people who were diagnosed outside of childhood, but the majority of T1's that I know were diagnosed as children or teenagers. They're the norm. So what does that make me?
I've thought long and hard about how to say what I'm about to say. Sometimes life as a T1 diagnosed as an adult can be a bit 'lonely', for want of a better word. You were never a 'child' with diabetes, and as far as I know, my mum and dad have never sat up at night thinking about my diabetes. They've never had to 'deal' with it - it's always been my thing (please feel free to jump in if you feel I'm wrong, Mum, since I know you'll be reading this!).
I have heard from various sources that I 'don't understand', because I never had to deal with growing up with D. I'm an adult, and I've not had their many years of experience. But that doesn't mean that I don't know a thing or two. I've been dealing with this myself since day one. Sure, I've had a lot of help from wonderful people, but the shoe drops with me and no-one else. Just because I haven't been doing it as long, doesn't mean that I don't know what I'm doing.
I was amazed this summer, watching twitter, and reading the many blog entries aboutCWD: Friends For Life Conference. I had always assumed that this event was....well, for children, as the name does suggest. I would never have considered attending, because I'm not a child with diabetes, nor am I a parent of a child with diabetes. But then I saw all the reports coming in about it (and the Roche conference, but that's another case entirely!). And I wished I was there. I think it's about needing a sense of belonging.
I will never be able to reminisce with you about 'way back when'. I never went to diabetes camp. I never had to deal with teachers not understanding. I never went to a prom or graduation and worried about it. But we're all here in the same boat. We all have 'Lost Boy' pancreases (pancrei?). One day they decided not to grow up, and all ran away to Neverland. We have the pancreases that never grew up. Mine just ran away a little later. And despite that, I'm here, and I'm on the same journey with you. I test, I carb count, I inject. I hypo, I hyper. I get blood drawn, I think in numbers. It's like in The Velveteen Rabbit, which was one of my favourite books as a child. I do all these things that you do as well, whether you've had T1 since childhood, or if you're like me, and joined in a little later in the game. Regardless of the starting point, we're all real.
Sunday, 19 September 2010Leaving it til late in the game here, I know, but I thought that, since I missed it last year, I really should get around to doing the '30 things you might not know about my Invisible Illness' meme, being as this is the last day of Invisible Illness Awareness Week for 2010. So here we go.
1. The illness I live with is: Mainly? Type 1 Diabetes, but of course you knew that. However, also Asthma and IBS, which you might not have known. But I'm going to be answering this in reference to T1.
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: The start of 2009, at the latest.
4. The biggest adjustment I’ve had to make is: Being much more self disciplined, and analytical.
5. Most people assume: That T1 is either the end of the world, or it isn't a big deal. Neither of those statements are true.
6. The hardest part about mornings are: When I've gone to bed higher than I would like, or I've had an evening hypo. Either way, I always feel like absolute rubbish the morning after.
7. My favorite medical TV show is: Scrubs! Love it to death, and also the fact they have a diabetic character (Turk has Type 2, in case you don't watch it) whose diabetes doesn't just disappear after one episode. Also the bonkers humour is just about bang on.
8. A gadget I couldn’t live without is: My Bayer USB. Honestly, I can't imagine a meter I'd rather use.
9. The hardest part about nights are: When something goes wrong, and I have to make the call on what to do.
10. Each day I take __ pills & vitamins. (No comments, please) Well, being as insulin is neither, none, actually.
11. Regarding alternative treatments I: Have no time for people who are flogging false hope through 'treatments' that have no actual medical application. Insulin is the only treatment option for T1. However, I'm not completely dismissive of 'alternative' therapies when they are appropriate. I'm a big advocate of aromatherapy and massage, for instance, but I would never suggest that these should be used in isolation.
12. If I had to choose between an invisible illness or visible I would choose: to instead try and make invisible illnesses 'visible'. It's achievable to think that we can break taboos and educate people about invisible illnesses, whilst science works on cures.
13. Regarding working and career: There's a part of me that's concerned about broaching the subject of diabetes with my next boss, whenever I move on. I think that's part of the reason I'd either like to freelance or run my own company.
14. People would be surprised to know: That sometimes I'll say things are ok, because I don't really want to explain the whole story. But it's not as easy as I'll make out.
15. The hardest thing to accept about my new reality has been: That sometimes diabetes will make demands that you have to pay attention to, and can't push aside. Also sometimes you've got to be a little bit selfish.
16. Something I never thought I could do with my illness that I did was: I've never really thought that there was anything I couldn't do.
17. The commercials about my illness: I've never actually seen one. Although, the leaflets that come with various magazines and letters that always seem to be for hearing aids, walk in baths, and funeral plans do annoy me.
18. Something I really miss doing since I was diagnosed is: Drinking fruit juice, just because I'm thirsty.
19. It was really hard to have to give up: Grazing.
20. A new hobby I have taken up since my diagnosis is: DanceSport - I love it.
21. If I could have one day of feeling normal again I would: Cherish it. Not having to calculate every bite of food, or think ten steps ahead would be wonderful. Oh, and drink a lot of fruit juice.
22. My illness has taught me: That you can't ask for patience without expecting that you'll be given a chance to show how you can be patient.
23. Want to know a secret? One thing people say that gets under my skin is: It could be worse, it could be a,b or c. Yes, I know I could have any number of other things. But I don't, I have Type 1 Diabetes. Telling me that doesn't help me deal with what I have, it just makes me feel like I should feel bad or guilty when I find things difficult.
24. But I love it when people: Genuinely want to know more, or ask questions.
25. My favorite motto, scripture, quote that gets me through tough times is:I know that You can do all things, and no plan of Yours can be ruined (Job 42:2)
26. When someone is diagnosed I’d like to tell them: It's ok to be scared, but there are people just like you out there who just a bit further down the road. They will help you.
27. Something that has surprised me about living with an illness is: I'm actually probably a more well rounded person with my illness than I was without it.
28. The nicest thing someone did for me when I wasn’t feeling well was: Just sit with me when I needed it.
29. I’m involved with Invisible Illness Week because: I meant to do this last year, but never got around to it!
30. The fact that you read this list makes me feel: Like you have a lot of patience! And that you might post your own list.
Tuesday, 14 September 2010So I've been a little bit on the quiet side recently. As the old cliché goes, it's not you, it's me. It's been a busy and strange month, and unfortunately, writing here had to take a back seat during that time.
I did miss you all though! I've been quiet all over the place, really - Twitter, Facebook, forums. Not through a matter of choice, but rather necessity. I had certain things that I had to get done. For the most part, it's done, but some things are still yet to be done.
Relating to my last post, about pumping - thank you to those of you who commented, or spoke to me elsewhere - I really appreciate your thoughts. I have decided to go ahead with pumping, at least for the time being. It does make sense to try. So I'll be starting at either the end of October, or the start of November. No news yet on what pump I'll be using, and I've still not decided whether I want to push for the Animas or the Medtronic. Still one more decision to make there!
October's going to be another busy time. Can't believe how quickly it's rolled around, but it's only a few weeks until I start my MA. With that, and Dancesport starting out again, I'm going to be rather stretched for time. Hopefully I won't go 'dark' for as long as I just did - it's all about the routine!
Interesting piece of news for you though. If you're at all nearby, I'm going to be speaking (briefly) at the Diabetes UK Volunteering Conference for the Northern & Yorkshire Office. So I'll be in Darlington on 9th October, if you're in the vicinity and want to say hi!
So, if you're still reading despite me being quiet for this long, hi, again, and let me know what you think of the new layout!
Wednesday, 25 August 2010If you've been talking to me on Twitter over the last few weeks, this isn't going to come as a huge shock. I know there are some who I haven't told though, and I haven't really publicly announced my decision to those I've been talking to.Well anyway, a while back, I talked about the fact I'd been thinking about pumping, and whether it was something I should consider. Lots of you gave me some really wonderful advice.
Then I sent an email to my DSN, who sent me one back. Not long after, I got an appointment with the nurse who deals with pumps. That has since been and gone. I didn't want to lose momentum with or distract from The D Team fund-raising, so I didn't mention how it went. The bottom line though, is that I've been offered a pump, to start at the end of October/start of November.
It's been mentioned to me by various people (not that I wasn't already aware of this) that I don't fit the NICE guidelines (that link might be interesting reading for those in the US). This is true, and I don't deny it. I went to my appointment with this in mind, and just with the attitude of wanting to know more about pumping. What ended up happening was quite interesting.
The DSN who deals with pumps at my hospital couldn't be more lovely. I told her about my concerns about my insulin sensitivity, and how I was beginning to lose my initial hypo awareness. This is true, although it's something I don't think that I've really discussed on here.I also told her that I was unsure about pumping - I wasn't convinced with being attached to a device 24/7. I was open about that from the beginning.
We discussed my general control, lifestyle, frequency of testing, that I was starting an MA fairly soon, and how that might disrupt patterns that are easier to keep at the moment. She told me that she was impressed how much I already seemed to know about pumping. Then she asked if I wanted her to take my case to the review board. In her words, I 'don't strictly qualify, but you're clearly working very hard to get good results. You're smart, pro-active and educated. Why should you be denied the gold standard for working hard? I could tell you to let your A1c slip to make it easier to qualify, but I wouldn't do that, and I don't think you could either.'
So thinking that my case would get turned down, I said go ahead. Then two days later, I got an email saying I'd been approved. I think I sat staring at my laptop for a good minute before moving or saying anything. I hadn't been expecting that at all. Trouble was that now they'd said yes, I didn't know what to do. Like I said during my appointment, I've never been wholly sure it's right for me. I was scared. Still am, if I'm completely honest.
Since then though, I've done a lot of thinking about it, and I've decided to go for it. I'd never forgive myself if I didn't even try, and I might never get the opportunity again. So now that I've said yes, what now?
Well, it seems that my clinic isn't specifically tied to one sort of pump - they have people using Roche, Animas and Medtronic. I get the general impression that if I give a preference to a particular model, they'll try and accommodate that. So I've been doing some homework.
Looking at the different pumps, I've mentally ruled out pumps by Roche. Now, I have no personal experience with Roche products, but from things I've heard from friends, I don't think these are appropriate for me, for various reasons.
So that leaves me with the Animas 2020, and the Medtronic Paradigm Veo. I've got pros and cons for each in my mind, but they're coming out mostly tied. So, since you guys gave me such wonderful advice last time I asked about pumps, I'd really love to know people's experiences with these two companies and pumps. Negatives as well as positives. What are the features you love, and what would you like to change? What would you tell a novice pumper that no-one ever told you (and you wished they had!)
The floor is open!
Thursday, 19 August 2010There's been a lot of things said about the Channel 4 documentary 'The Hospital', and its episode on young diabetics. It aired on Monday, and I missed it. I have only just had the opportunity to watch it online, write some things down in my notebook and collect my thoughts.
For those of you who haven't watched it, or are in the US/elsewhere and have no idea what I'm on about, the show was set within the clinic of one hospital, and followed the stories of a group of young diabetics. They seemed to be between 15-26, and all either had complications, or paid little attention to their management.
Most of you probably know that my background is in theatre. I've been interested in it since I was about five years old, and I've been studying it for the majority of my adult life. So I'm not coming at with no understanding when I make the following observations:
I know why they formatted the show the way they did.
Drama springs from conflict. This is not a rule that has no exceptions, but for the most part it holds true. Particularly for a show like this. They picked case studies from the extreme end of things - of course they did. It's shocking. It provokes discussion.It's shock and horror for those who know little or nothing about either type of diabetes, and it's a short, hard, jolt even for those who take the management of their diabetes extremely seriously.
Understanding of such decisions aside, it was not easy viewing. The young people that were interviewed had a variety of issues and complications, all in different stages.
One of the young people followed was Francesca, a 15 year old Type 1. During the programme, the narration told us that it had been months since she had tested. That jars with me on a personal level so badly. If you told me I couldn't test for a day, I would struggle with that.
A later scene showed her testing, after finding a (what I assume to be) spare meter in a drawer, which said she couldn't even remember how to use (I believe it was an Optimum Xceed, but I could be wrong.). The meter read 'HI', a result that did not particularly seemed to faze her. She then went outside for a cigarette.
They did show a visit that she had from a community nurse. In general, I don't like to be overly critical of healthcare professionals, as I know that their job is both complex and demanding. However, there are many that you can come across that just don't approach things in the appropriate way. This was one of those instances. If a random reading from your meter is 'HI', then perhaps advising that young person that she might want to think about testing her levels "during the party season", if that's "all right", might not be the best course of action.
Francesca admits to being a binge drinker. This and under-age smoking bothers me intensely. She says that what she wants to do is "socialise", but this appears to be limited to getting drunk with friends. At the age of 15. I know children are drinking and smoking at a younger age, but this makes me incredibly sad, and I don't want to come across as judgemental, but I would really love to know where the parental influence is in these situations. Where are these children getting money for alcohol and tobacco?There were only two parents interviewed during this show. Both I found to be infuriating, if I'm honest. Francesca's mother did, in my opinion, have her priorities all wrong. Her biggest concern seemed to be the possibility her daughter's poor control might cause infertility later down the line. This enraged me. I have great sympathy for those who deeply desire a child but are unable to have one, but it is not the biggest tragedy that could happen to a person. Surely having your daughter alive and well is more important than currently non-existent future children? She also said that Francesca had been "left to control it herself, really.". I know, thinking about myself at age 15, I doubt that I would be able to handle the complexities of a chronic illness like diabetes.I'm stunned that she's willing to turn it over to a child in that fashion.
The other mother that they interviewed was the mother of Yasmin, a Type 2 diabetic, who I believe was 17 (please do correct me if I've got that wrong). Her understanding of the way diet and nutrition is such a vital part of diabetes management would have been laughable if it hadn't been quite so alarming. Yasmin was recovering from an abscess in her chest, and had been strongly advised that she needed to lose weight. Her mother served her a large amount of rice and potatoes accompanied with several lettuce leaves and stew, and considered that to be a balanced meal. She also then complained that healthy eating was too expensive. Again, that bothers me. Healthy eating does not need to be an expensive thing. I don't claim to be an expert on Type 2, but there just seemed to so much wrong with that situationOther cases were shown, such as several young, pregnant women, and a 26 year old with final stage kidney failure, who was waiting for a kidney and pancreas transplant. Other things that were shown were the amputation of a toe, with no warning and in graphic detail. I'll be honest in saying that seeing that made me want to run away and hide. These were all important things for me to see, and I'm sure for many others. They certainly weren't pleasant or easy things, but seeing what could happen motivates me to make sure that it does not.
I'm not a believer in scaring people into submission. You shouldn't operate out of fear, because that's no way to live your life. But living with realisation of what could happen, and being motivated to prevent it? I think being armed with the facts is important. Ignorance might be bliss, but knowledge is power. It's unsettling to hear these young people, saying "I haven't thought about the long term at the moment...I'm not bothered". I remember back 10 years and being 15 - at that age, it's hard to imagine being 25, let alone 45, 55, 65. Something has gone terribly wrong in the system though, if at such a young age, your future self and their health is so way off your range of thought that you'd rather "go back to my more important priorities" (which the show implies to be getting drunk with friends).
I know that I've never been a child or a teenager with diabetes. This is actually something I'm planning to write about next week. I don't know what that's like, and I never will. But I refuse to believe that the actions of these teenagers are purely their fault. Rebellion is one thing, but there seems to be something missing. There seems to be the option of education - the programme showed what appeared to be a clinic with multiple healthcare professionals available on what appeared to be a drop-in basis. I don't think it's necessarily fair to expect a young person who is in all intents and purposes still a child to be entirely responsible and pro-active about their healthcare. Some independence can only be a good thing, but somewhere a link in the chain is breaking down. Hopefully programmes like this might be able to start shedding some light on where the problem lies, and how our healthcare system can address it.
The doctor who was interviewed for this, Dr Richard Savine, has come under a lot of criticism from comments online. He's been accused of being patronising and generalising diabetics with sweeping statements. I personally don't agree. What I saw was a man who has been trying to get through to his patients for a long time, and is tired. I heard nothing from him that got me worked up, or angered me in any way. Yes, he made comments about other young people looking at young diabetics as "damaged goods". Not the best phrasing in the world, perhaps, but he didn't make out that these were his views. I thought that he seemed to be doing all that he could with patients who did not, for whatever reason, seem keen to listen to what he had to say.
Admittedly, the narration of the piece left something to be desired. I would have been happier if there had been stronger and clearer explanation of the differences in the two types, and each young person introduced by with the appropriate type, as only Yasmin, the young lady with Type 2 seemed to be identified by her type. I'm not a huge fan of 'diabetes' as an umbrella term. We're all one community, but there are fundamental differences which the public are not always best educated on. Until these differences are explicitly understood by the public at large, I'm of the opinion that the definitions should be repeated. This might take some time, but if we keep on repeating, we might well get there.
So on the whole, I feel that The Hospital has perhaps had a reception that it didn't deserve. It had its faults, and there was definite room for improvement, but if you watched it with the understanding of the type of show that it was, then that brief was filled. It was never going to be a positive, sunny show, displaying people with good management skills handling their diabetes well, overcoming day to day issues, and accomplishing amazing things. I hope that one day that will see the 'light' of broadcast time, but for now? There's not enough conflict in it. Conflict is drama, and drama is what the makers of The Hospital were after.
Wednesday, 18 August 2010Well, I promised you all footage of the event, and here it is!
It turned out to be a glorious day, despite our fears (and best intelligence) that it was going to throw it down with rain. We had a few mishaps, some of which you can see on here, but mostly yours truly having a giant freak out on a cargo net after losing balance. I also had to wear a lovely 'special' harness done up with a wrench (sponsor us some more, and I'll show you footage of it being taken off!) because there was a 'risk I could pass out' whilst on an obstacle.
But here we go!
Sunday, 15 August 2010So today was the day. And we did it, in surprisingly nice weather after a Friday and early Saturday morning full of heavy downpours.
We got plenty of footage, and I'll be putting together a film over the next couple of days to show you what we got up to. For now though, as we've reached the 50% mark, which is amazing, it's important that we take a moment to say thank you, and think why we're doing this in the first place:
Friday, 13 August 2010OK, YouTube is evil and will not let me upload this one. But I really want you guys to have a chance to see it.
However, Andrew "Hannibal" Dyer is a GENIUS, and managed to host it elsewhere :D
So if you would like to watch it (which I hope you will), just click here
Wednesday, 11 August 2010Uploading on YouTube is REALLY slow! This was filmed, and would have otherwise been up last night if it hadn't been for the rate of upload.
Catch a glimpse of a rare thing - Andrew "Hannibal" Dyer has a go at presenting!
Sunday, 1 August 2010Well all, I'm now back at home. It has been a real joy to have all the wonderful guest posters here for the last week, and I'm thrilled to be putting up the final one.
As I was throwing the last pair of socks into a bag, and almost forgetting my hairbrush last Saturday morning, my laptop pinged at me to let me know that I had new mail.
It was so annoying that I had only five minutes to get out the door, and a week's worth of filtered internet access that wouldn't let me do any more than check my email, has meant that I've had to wait until getting back home to put up this wonderful post!
I was thrilled that Cherise agreed to end this series of guest posts, and she's done it in style, with a great piece on the DOC and social media. So I'll stop wittering on, and let her take over!********************************************************
I would like to thank Becky for inviting me to her side of the world! Thank you for allowing me to write a guest post.
Stand by me
The other day I came up with an idea. I spoke to Scott (husband), Scottie and George. The idea was hit with all of them so I decided to go ahead with it. Where to start? I wasn't sure. Who would participate? I did not know. What if it flopped?at least I could say I tried.
I wrote a blog post to introduce Diabetes Social Media Advocacy (#dsma) to my friends, the Diabetes Online Community. I hit publish. I waited. The comments made me smile because my friends wanted to standby me and support @DiabetesSocMed.
July 21, 2010 at 9 PM #DSMA made it's Twitter debut. There were a total of 77 people from different walks life, type 1's, type 2's, parents of children with diabetes and even a doctor. I was watching the tweets from my laptop, tweeting with my ipad and retweeting with my iphone. I could barely keep up! It was touching and FREAKING amazing!!! We discussed, vented, laughed and made new friends. I like to think of it as an hour of sweet goodness, education and awarness. It was sweet because of you (the DOC).
Thank you for standing by me and helping take our community to the next level. I can't wait to tweet with you all on Wednesdays. Diabetes Social Media Advocacy (#DSMA) was my idea but it was brought to life by you.
And with that great post, I finish off a great week of guests. Thank you to each of you who've filled in for me this week - I'll gladly do the same for you any time!
I'm absolutely exhausted, but if not tomorrow, then certainly by Monday, we'll be back to 'regularly scheduled programming'
Wednesday, 28 July 2010Olivejooice is a blog I absolutely adore reading. Read this post, and I'm sure you'll see why. I'm so inspired by this lovely lady's sweet nature and determination. And she runs. My word, if you saw my last vlog, you'll know how rubbish I am at that, so I admire her all the more for it!****************************************
Friendship. I’ve always been pretty shy and because of it, finding good friends has never been easy for me.
After I was diagnosed with diabetes, one of the first things I did after calling my mom was text my best friend at the time. Her reaction: That sucks. Mine: Yes, yes it does.
While learning the ropes of this new disease, I also learned how to navigate my friendships being newly diagnosed (and to this day I’m still learning). Who needs to know? Do I inject myself in front of them, or is that rude? Do I tell them the basics of low blood sugars?
Which friends need to learn how to give me a glucagon shot? Do I bring it up? Do I pretend it’s not there? Should I eat this cake in front of them? If I refuse the cake, am I giving them the wrong impression of diabetes? Will they think I can never have cake? Is it okay to ask them not to ask me about my blood sugar levels when I test?
Overall, diabetes doesn’t come up in most of my friendships (outside the D-OC, of course). Of my closest friendships, my childhood best friend doesn’t like to talk about it (I think this is because she worries), another friend has taken a “mother hen” approach and will at times wag her finger at my food choices and try to lecture me on the best way to treat my lows (at one point she said string cheese). Each friend has their own way of dealing with the fact that I have a chronic illness, but the fact is, diabetes doesn’t harm any of my friendships.
Recently, I learned my best friend (whom I refer to in my blog as Veronica) brought up something she did at my bachelorette party that I didn’t know about. After many hours and many drinks, my group of friends made their way back to the hotel room. I was already there with my friend May (we had the buddy system going on, and I went back earlier than the rest).
I remember being on the bed, the room spinning. Veronica came over with my contact case and meter in hand. “Take off your contacts and put them in here”I obliged.
“Did you test your blood sugar”
“Wha? Yeah…I tested when I got here” I peered at her through a half closed eye.
“Hold out your hand” and with a prick, she tested for me (after a scwabble about my busted meter display, and me explaining that it pinged to my pump and I could see the numbers there).
What I didn’t know, was that Veronica also set an alarm on her phone to go off after a few hours, so that she could wake up and remind me to test my blood sugar again. I was amazed. How did she even know to do that? I didn’t even remember it.
Veronica and I hadn’t had the diabetes talk yet, I hadn’t explained low blood sugar with her, I never told her the affects of drinking with diabetes, I never asked her to make sure I was okay blood sugar wise that night. She just did it. When I asked her why, she said that she wasn’t questioning my ability to take care of myself, but that it’s easy to forget about things like that when we are all out having a good time. She wanted to make sure I was okay first hand.
Diabetes hasn’t harmed any of my relationships…but learning about Veronica’s actions that night, it certainly strengthened ours. She shouldn’t have had to keep an eye on me, but the fact that she did anyway speaks volumes about just how special of a friend she is. She took the time to learn about my disease simply because she wanted to know about it, for me. I love her so much for that!
That was a really beautiful post - I think we all need to thank the 'Veronicas' in our lives!
Tuesday, 27 July 2010Tuesday already! Today's guest is Jacquie from Typical Type 1. I love what she said to me when she emailed this across to me. 'Diabetics of the world unite!'. Couldn't put it better myself. So I'll let her take it away with a story of a far off land...
"How much do I bolus for a pan-fried fish with the head attached?"
It was the first time I'd ever asked myself that particular question. Then again, it was also the first time I'd ever been in Greece -- or anywhere outside of the United States, for that matter.
But there I was, on one of the peninsulas of Halkidiki, surrounded at the dinner table by my husband, his dear Greek friend George, George's mother, father, and wife, Eleni. Oh, and a plate full of fried-crisp whole fish: heads, tails, bones, fins, eyeballs and all.We'd been in Europe for almost three weeks, and while I was thoroughly enjoying the adventure, I was also coming down with a debilitating case of homesickness. After all, foreign countries can be . . . pretty foreign. I'd noticed that the streets were home to little herds of stray dogs. Virtually everyone was a heavy smoker. The elevators counted the first floor as "0", and the 2nd floor as "1." And although the friends we stayed with spoke English, most of the conversations around us took place in Greek.
I might have succumbed to my homesickness if it wasn't for one amazing coincidence: Eleni, my husband's best friend's wife, has Type 1 diabetes -- and an insulin pump. See, I'm one of those dorks who will run shamelessly up to a complete stranger -- smile on face and pump in hand -- if I even see a hint of transparent plastic tubing peeking from his or her waistband. It's why I feel an instant connection to each and every D-OC'er, no matter where they're from or how old they are or even how long they've been living with diabetes. I can't help it.
From what I knew, Eleni was a little more reserved about her T1 status. She, too, had lived with the disease for well over a decade, so the ins and outs were old hat. She and her husband had just had their first child, and hers was a pregnancy without complications. Here was someone living the kind of diabetic life I'd always hoped for -- only on the other side of the world and without as many pets. Although she insisted that she could barely carry on a conversation in English, Eleni spoke the language better than some of my friends do. She explained to me what it was like trying to feed a baby when your blood sugar's in the 50's, and how her husband jokingly tossed a candy bar her way any time she started to get grumpy. Thinking back, I wish I'd asked her how to say "My blood sugar's low" in Greek.That final evening of our stay in Halkidiki, I was pretty much ready to go home. I was upstairs, changing into the last clean outfit I had in my suitcase and borrowing Eleni's hairdryer before our dinner of fried fish. (I was dying for some Chick-Fil-A.) The doors between our two bedrooms were both open, and just as I was ready to head downstairs, I heard the noise that's the same in every language: "Ka-CHUNK!"
Of course, it was Eleni's infusion set inserter. I looked over and saw her in the familiar position: shirt pulled up to expose the site on her belly, neck craned as she looked down to smooth the edges of the site with with an alcohol swab. She glanced up, we smiled quietly at each other, and I descended the stairs to take my seat at the dinner table.I haven't talked to Eleni much since we left Greece, but I hope to see her again in the near future -- either on our side of the pond or hers. Meeting her was one of the highlights of my trip.
Out loud, "How much do I bolus for a pan-fried fish with the head attached?" is a question that doesn't make much sense when I'm among English-speaking friends in the States. But across the table from Eleni, at that moment, asking it made me feel right at home.
Monday, 26 July 2010Kelly Kunik is awesome. There is no way around it.She's sweet, funny, and loves pirates as much as I do. She's also a kick ass diazon, who I respect as much as I like. So I was so pleased that she agreed to join in this week's line up of guests. I love this post, because it's so completely true.
*************************Diabetes Has Made Me Many Things
Diabetes has made me many things, most of them good.Diabetes has made me AWARE. I pay attention to others and myself and by paying attention I’ve prevented myself from being hurt – and have prevented others from being hurt.
Diabetes has made me TOUGH. There are days when diabetes has “put me through the wringer,” and yet I’m still here. WHY? Because diabetes has made me pull myself up by my bootstraps, dust myself off, and continue on with life.
Diabetes has made me GENTLE. Yes, gentle in the sense that I understand what it’s like to not feel good, so I’m gentle with others who are having a bad day.
Diabetes has made me GRATEFUL for all of life’s blessings, big and small. I’m grateful for Drs Banting & Best and their great brains.
Diabetes has made me APPRECIATIVE. I appreciate the little things like; correctly bolusing for an unknown food, finding unopened infusion sets in old hand bags, and uber appreciative of a darn near empty insulin reservoir that didn’t crap out completely until I made it home from work.
Diabetes has made me see the FUNNY. I can laugh at infusion sets gone awry, unexpected interrogations by the “Diabetes Police,” and pump batteries needing to be changed at the most inopportune of times. There’s more funny moments in a diabetes life, but the above will do for now.
Diabetes has given me the gift of a BULL SHIT FILTER - a wonderful mechanism in the brain that allows PWDs (people with diabetes) to see through the bullshit that life throws our way and focus on what’s really important.
Diabetes has given me a COMMUNITY and has surrounded me with others who live daily with diabetes (or have family members that do) who speak the language of diabetes without uttering the d-word.They welcome me with open arms and hearts and allow me to do the same. And my COMMUNITY continually teaches and always makes me feel loved.I consider them family and will love and protect them to the best of my ability.Diabetes has helped make me.
*************************Thank you so much for that, Kelly! If you haven't been following her blog already, where have you been? I insist that you go there now. Go on, I'll even link it for you. There you go....no excuse!
Sunday, 25 July 2010Chris is brand new on the DOC scene, and I'm thrilled to have her posting today. Her blog, Canadian D-gal, is a really worth a read. I'm also really looking forward to trying her recipe from the first batch of D-Feast recipes!
I was diagnosed with diabetes in the summer of 2002 at the age of 22. Before diagnosis I was a regular adventure seeker. My hobbies included rock climbing, scuba diving, Mountain biking, Snow boarding, backpacking… the list goes on (AND ON). None of these things stopped upon diagnosis. Just the preparations became harder. Suddenly it was more than just throwing on my shoes and going for a run.
I am not one for jewelry; I find it annoying and cumbersome. I once owned a Medic-Alert ID bracelet that looked like a sports band. The bracelet didn’t last long before I just stopped wearing it because it bothered me. Over the years I have continued to be just as active in the outdoors as ever but have never really stopped to think about the repercussions if something did “HAPPEN”. I am with people sometimes but more often than not I do these things alone. And anyone that knows me well knows I am constantly pushing my limits and biting off more than I can chew. Often barely making it home some days. I've been known to make a phone call or two because I've ridden my bike too far and can't make it back. I can’t count how many times I had to walk the rest of the run, or stop on the side of the road during a ride. Sure I can go everywhere with my cell phone but that is not always trustworthy.
I have never uttered the words “WHAT IF?” What IF something happened? What IF I wasn’t able to speak? I've never asked that question because I was terrified to come to terms with the reality that something could easily happen. I’ve managed to go 8 years without running into an emergency situation that I couldn’t handle. With my lifestyle and stubbornness, that surprises me. However, putting myself out there almost every day in compromising situations I feel like I’m a walking talking emergency waiting to happen. Maybe I’ve done well for myself over the years but I’ve come close, on a few occasions. I’ve got to stop going along waiting for something bad to happen to give me a reason to look out for myself. After all, I’m usually alone and there is nobody there to look out for me but me. I’ve got to stop giving myself the benefit of the doubt and DO something proactive.
I thought about medic alert jewelry but I just couldn’t bring myself to actually wear any of it. I thought about those shoe ID tags but I do so many different things I’d have to move it around from running shoe to cycling shoe to roller blade to hiking boot, or buy many of them. It didn’t seem like the right thing. A Tattoo seemed like the right decision for me. NOT only do I never have to worry about breaking it or loosing it. I don’t have to wear jewelry! It’s there through all the running, bouncing, spinning, sweating, swimming etc. It will never fall off or get damaged or scratched. It’s clear and legible and obvious and PERMANENT! No matter where I go, or what I do, it will always speak for me when maybe I can’t. So I researched and designed it for a long time and this past Saturday I had it done and I love it! It has a recognizable medic-alert logo with the red symbol. It also has the blue universal ring to symbolize diabetes. And in clear text it says DIABETES TYPE 1.
More important than anything else, diabetes is life-long. Unfortunately it’s not going away any time soon and THAT, my friends, is the ugly truth about it. My tattoo is more than medic alert, This will speak for me for the rest of my life.
I love this post, because it shows how different we all are, and how we make life with D work for us. I myself would never get a tattoo, but I think Chris' is clean and tasteful, and if I ever were to get one, it would probably be something rather like this!