Thursday, September 2, 2021

The Path To Pumping - Pt.3 The First Week


Whoa! What a first week it's been with my pump. Time has flown by and so much has happened, even progressed, since the last blog. Let's get into it.

Firstly, huge love and thanks to all my friends and peers within #GBDoc. I have been inundated with support and advice from seasoned pumpers, loopers, HCPs and curious MDIers. Sometimes, I feel there is a hoard of big hearted people who have my back and who can relate. It really does swell my heart and I doubt that I could ever repay such kindness and support.

The first week! So, no (or very minimal) insulin on board, on Wednesday morning I interrupted @Julesbhrh from celebrating her birthday month to supervise my first cannula insertion and to get started with pumping. Doing that over a video call is not easy! especially without a COB (coffee on board) and with a rapidly increasing blood glucose level. It took a while, as most things do in your 40s, but we got there with my CGM reading 17.4 mmol/l. Icky, right? Previously, a Novorapid pen correction would take several thirsty hours to bring me back from the brink. Not so with Fiasp in the pump. After 30 mins I was nudging the happy zone and I could even plan my lunch and pre-bolus. What a great start!

 The first 3 days proved to be a continuous stream of surprise and delight. Fiasp was working beautifully and is extraordinarily fast, I had begun to adjust to sleeping with a pump attached, my TIR rocketed, I wasn't overwhelmed at all, no injection fatigue, fasting BG numbers leading me to question if I'd been cured by the Cinnamon Fairy, overnight. Apart from a kinked cannula, which taught me that when no insulin is going in I will become hyper very quickly, it's all been smooth sailing.

Can I brag? Just a quick brag. Between Saturday evening and Tuesday afternoon, my TIR was 100%. What in the name of Banting's Balls! I've had two 24hr TIRs in 4 years. That's almost 3 days in a row. Yeah, it's gone well. I've since managed a full set change without supervision and I've grown confident and comfortable with the pump.

Of course, it can't end there. I'm not in this for a quickie and then back to pens. No way, Amigo. That means I'm going to need consumables and Fiasp on prescription. August, it seems, is a popular time of the year for annual leave within the NHS and I'd chosen a Bank Holiday to reach out to my HCPs. To their credit, I was replied to on the Tuesday morning by email and had a telephone call in the afternoon. Outstanding stuff. See! HCPs from UHL, I can be kind and give credit where it's due. No need for patronising DMs or to block me or unfollow me. There is nothing to fear. Meow! 

I digress, what did the HCPs say about me going it alone? "We've never had this before" made me happy because who wants to go to work and deal with the same thing each day? A really good discussion with my Consultant and DSN lasted for around 30 minutes. The great news is that Fiasp is happening right away. Beyond that, I have been referred to the Pump Team and a certain Professor who some of you will know from Twitter. No, Partha relax, it's not you. At that referral, I hope to continue the good, honest, dialogue with that team and work towards full pump funding.

While I'm waiting for that referral to arrive, I'm hunting for consumables and I've opened an account with Roche and Accu-Chek. I've been given permission to buy my own consumables, lucky me. It appears that the items I need will cost around £120 per month, that is excluding VAT. If I want to use an insertion device for my cannulas then that's another £25. Yikes. Hi Americans! I can relate... a bit. Some kind folk have sent some supplies to me for which I am hugely grateful. I'm looking at you @NanaNeylin and of course the world's hardest working person @Moodwife

And that's where things stand, today. I'm delighted to be pumping, amazed by the numbers, hopeful that the pump team will agree that funding makes sense and most of all I'm determined. This will happen. 

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

Tuesday, August 24, 2021

The Path To Pumping - Pt.2 The Gift


'Are you pumping already? That was fast!' Well, yes and no. No, as I write this but hopefully Yes within 24 hours of publishing and once this blog goes viral. What? I go viral! Some of my tweets get like... 8 Likes!

Welcome to Part 2 of The Path To Pumping. I've titled this one "The Gift" because that's exactly what you see in the photo above. I'm a firm believer in "Pay it forward", especially in relation to Diabetes. That's not because I'm trying to buy my way into the good books or affections of others. It just feels good to help others who need it. It's a great form of peer support and paying it forward can come from gifting or loaning equipment, such as a pump or just sharing your knowledge and experiences. This blog is also dedicated to my friend for making a monumental effort in gifting me this pump, one of the kindest and hardest working people you could ever meet. I am truly blessed.

So, how does this impact upon me getting a pump through the official NHS channels? I'm still following that route and the ball is firmly in the court of DAFNE. If you've followed some of my tweets then you might know that getting an appointment there hasn't been a smooth process. Following my Diabetes review and agreement to attend DAFNE as a gateway to pumping, a letter arrived in the post which invited me to make a registration appointment to find out about the course. K, can do. I sent an email to no response. After 2 days, I sent a follow up email, stressing that the clock was ticking on arranging this appointment and being appreciative of a soonest reply. The NHS letter stressed that I must arrange an appointment within 2 weeks. Sadly, no response. Perhaps emails aren't routinely checked. I still have a week until my deadline at this stage. I let the weekend pass and then I tried a phone call on the Monday morning and voicemail picked it up. I left my details and politely asked for a call back, again expressing concern that this is a time sensitive appointment as noted in the letter. No return call happened and I tried again at 4.30pm, around 7 hours later. No ringing tone, this time just straight to voicemail. I hung up, not wanting to leave multiple voicemails about the same issue. Tuesday arrived. Tick-tock. Just before midday, I called again and finally spoke to a real person! Apparently, she was going to call me back. We arranged the registration appointment (telephone) for late September. 

So, that's that. But, not really. After making noises on Twitter, it became apparent that education/training isn't necessary for access to technology. I shouldn't need my GCSE in DAFNE to be offered pump funding. The temptation now is to refuse the course, dig my heels in and start quoting NICE guidelines. But! I'm a Joe Bloggs Diabetic, the everyday chap with T1D who has walked in, off the street because he's heard that pump therapy might make his Diabetes management better, provide a better long term outcome and reduce his day to day burden. I'll take the course because that's what the Joe Bloggs Diabetic would've been advised to do, what I've been advised to do. What you may be asked to do. Not everybody knows about guidelines or the right people to follow on Twitter.

Enough DAFNE, for now. 

The pump!

Right, I've loaded my small and over-worked brain with information, I have support from friends and anonymous HCPs. I'm ready to go! When my Lantus isn't on board., which'll be tomorrow morning. Today, I'll be checking and double checking and probably Zooming with pumping friends to be sure that I'm not going to make an enormous balls up. Assuming all goes well and things are settled, in a few weeks or maybe months I will investigate Looping through this pump but that's something for the future. The now is for getting used to pumping and not injecting anything. The very thought of not injecting insulin is completely alien to me. I do that approximately 60 times a week. I've never smoked but I wonder if this going "cold turkey" from injections might be similar. Old habits die hard and all that.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

Wednesday, August 18, 2021

Meeting Diabetes Peers

 


Another peer support blog? Kind of! But without the warnings, the concerns or possible problems. I'm going to focus entirely on the positive. Yes, I'm feeling alright.

I think we've reached a stage of twitchiness. 18 months of pandemic and avoiding the general public has been hard work and I say that as a pretty "happy to be alone" sort of chap. The horribly named Freedom Day signalled that it was time to interact a little more without the aid of Zoom or other video call apps. I've tried it a few times, now. Wow! have I missed it. The old saying of "you don't miss it until it's gone" really has applied when it comes to meeting my peers from the world of Diabetes.

Last weekend, a bunch of Diabetes and GBDoc folk & families met up to celebrate the 50th birthday of GBDoc Queen Jules. It was an outdoor event and, despite a brief rain shower, it felt entirely comfortable and Covid safe. It was fantastic to see familiar faces alongside a few new ones and I regret having to leave early, missing other great individuals from the Twitterverse. It was nice to see such interest in the event, despite it being a semi-invite only thing - as much as you can have an invite only event in a park. The majority of people responded to the messaged invites sent by Beth (Diadarl1) and myself and I know that Jules was very appreciative of those who RSVP'd without her chasing up.

Never been to a meet up? Neither had I until 2018. My Twitter persona might indicate otherwise but please don't assume confidence from a written word. I'm a quiet man and still suffer from social anxiety but to a much lesser extent than 3 or 4 years ago. Those early days of meeting my peers greatly reduced that social anxiety. Subsequently, I've hosted a video podcast, video quizzes, gave interviews to the media including BBC radio, took part in JDRF Fusion and stood in front of a room full of business people to talk about my CGM. All of those things and possibly others in the future (wink, wink!) are reaped from the seed sown at that first Diabetes meet up. Are you still undecided about meeting your peers? 

It's not all Diabetes, you know? Seriously, it's not. Everybody might be wearing Eau De Banting and there might be a hypo or two knocking around but the conversation isn't all Diabetes based. Don't worry about being bored, I never have been, just talk to your favourites from social media. You might have a question or two so just ask! I will be...

...and that'll be at the next "meet up" which is going to be much smaller in size but equally as glamourous as a park. I'm heading North to meet Dawnie (Moodwife) who is heading South to talk about pumping and looping and possibly coffee. The subject, for me at least, is exciting enough because I'm attempting to move from MDI to pumping which will likely lead to looping and to learn from your peers is the greatest education. It's also massively exciting because it's Dawnie! C'mon! 

And on we go. Talk is of other get togethers in other areas of the UK for GBDoc. I hope such talk bears fruit and I can meet others from this amazing community. Did you see the TAD announcement for March 2022? Maybe see you there! and at many other things for years to come.

I told you this would be a positive blog.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

Friday, August 6, 2021

Quack, Quack!


I'm afraid that you have Type 1 Diabetes. Have you tried a leech on your pancreas?

Before I get into it, today. I'd like to address the lovely comments and discussion that surrounded my last blog; The Path To Pumping Pt.1 Over 1,500 of you have read that and I'm astounded by that figure. I really will be following that up in the coming months.

Alrighty then! It's 2021 and Quackery is alive and well. It might even be thriving! Last week, my blog was spammed a total of 18 times from an individual in Ghana who promised cures for pretty much everything, ranging from Herpes to HIV. Diabetes got a mention, of course. Fast-forward to today and something involving salmon placentas and stem cells arrived in my inbox. Those aren't the only incidents, either. Throughout my time using the Internet, some 26 years, that kind of quackery has been an almost constant event. 

I think I'm well enough informed to never have fallen for such nonsense even in the early days. It's persistence and longevity does worry me, however. If there was never a buyer for such ridiculous advice then there wouldn't be a market. Since the dawn of the Internet, I wonder how many desperate people have become seriously ill or died from the advice of Quacks? It's terrifying to consider.

Not all advice is quackery, of course. Mansplaining, for example isn't usually a money making exercise. A keyboard and an urge to feel important and knowledgeable is enough motivation. Incidentally, men rarely mansplain to me. Make of that what you will. Advice, even in well meaning forms can be a dangerous thing. As Diabetics, we administer dangerous drugs to ourselves and just a small miscalculation can have dramatic, perhaps fatal, results. 

When it comes to the Internet, especially social media it's still the Wild West for medical advice. There are warnings on some platforms when keywords are picked up. Covid is a great example and Facebook appears to be taking some notice to SOME problems surrounding dangerous advice. Twitter is not and that's really disappointing. It's easy to report tweets and accounts for lots of terrible things but when it comes to dangerous, misinformation around health? Nothing. It's left to us as Twitter users to decide on what is correct and good information and what might put us in our graves. That needs to be addressed as a matter of urgency. Stronger content policing would serve social media platforms and the users well but if that will happen is debatable. Why? Well, content means views and views mean ad' impressions. Impressions mean income. Are the social media platforms really interested in taking care of us or taking care of their shareholders? 

I feel the eyes of the Freedom Of Speech brigade, muttering something about the "Thought Police" because they can't grasp how their bright ideas expressed through the Internet might damage others. They likely never will. Did anybody change their opinions and admit to being wrong on the Internet?

I think the Internet and social media are great places to get wonderful information and support. They're imperfect, of course and so is general society. I encourage treading carefully when it comes to your health and online advice. Would you listen to a stranger in the park in regards to your insulin dosage? I didn't think so. What's different to the stranger on Twitter?

I feel like this little blog has become a public safety information message which the majority probably don't need. If nobody was buying those pancreas leeches, though... 

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

Thursday, July 29, 2021

The Path To Pumping - Pt.1





It must've been during one of the last Diabetes appointments for me at my old clinic, before I threw my toys from the pram and transferred all my care to my GP, because the memory of the event is very hazy. The numbers weren't looking great, I wasn't feeling great, volunteers were wandering around and making small talk - which added to my tension and it was waiting room temperatures in there. 

"We could try you on a pump"

Have something attached to my stomach? 24 hours a day!? The idea was dismissed by me immediately and probably not in the kindest of tones to that HCP. What an idiot. 

Here we are, probably 20 years later, and I would crawl through fire to trial an insulin pump. In fact, what I've agreed to do might feel like crawling through fire but I'm going into this with an open mind, a clean slate, no judgements... at least none that I'll verbalise until it's over.

I got pump-curious after meeting so many #GBDoc folk, hearing their stories and wondering if that might work for me. I've carefully listened to their joys and woes and after many tweets and many messages I decided to make some noise about it to my consultant. We'd spoken about it in 2019 but my A1c was great, I wasn't really struggling with anything which might make pumping a priority and I felt the appointment time would be better served by bringing up Libre access. So it proved, although Libre funding wasn't straightforward and took some intervention by Prof. Partha Kar to make it happen.

This time! There will be no name dropping, string pulling or threats (just kidding). I'm going through the process as an ordinary Diabetic. I am, after all, an ordinary Diabetic as I've mentioned many times. I'll create a blog for each step of the process in moving from MDI to pumping, you'll hear about everything and this is Part 1.

The conversation with my consultant went exactly how I want every appointment to go. I know that I'm doing alright, I'm getting by, and once that had been confirmed I brought up the subject. I know it's not a case of ask and you shall receive with the NHS. The money pot is not an endless one and criteria has to be met and I think that's fair enough. I'm not here to abuse the system. I genuinely think pumping could take my T1D management to the best place it could be and here is why:

- Dawn phenomenon

- Impaired hypo awareness

- Injection burnout

- MDI & CGM (or Flash) use has reached it's limits in improving my Diabetes management

and a quick look at the details for those four points? Sure, okay. 

There is only one Phenomenal Dawn and that's @MoodWife. Dawn Phenomenonononon is really annoying and has begun happening to me more frequently despite Basal changes and tweaks. It's affecting my Time In Range and increasing my average blood glucose level and, of course, my HbA1c.

My hypo awareness is cancelled. In the last 5 years, I've gone from feeling hypo at 6mmol (when my BGs were too high) to feeling hypo at 4mmol (Yay!) to feeling hypo-ish at 3mmol and only having the strong feels when the number is low 2mmol. Worrying stuff, right? I'm glad I'm CGM'd up to the eyeballs and that I have alerts for falling BG otherwise you may have seen dramatic images of me in hospital. My hypos tend to happen when I'm asleep and my alarms usually wake me. However! sometimes they don't until things are very urgent. Worrying stuff again, right? My overnight BGs are a mess and it would be wonderful to have a pump provide more stability.

I inject at least 7 (SEVEN!) times per day. That can rise to 10 if things are really bouncy! and I'm becoming increasingly tired of the burden of it all. The idea of changing a canula twice in six days, compared to possibly 60 injections in that time, sits very pretty in my mind. That would represent a huge decrease in my Diabetes burden and a better QoL.

My overall management of my condition is very good. "You have very good control", said my consultant. I know, I'm kind of a big thing. I have many leather-bound books and my apartment smells of rich mahogany. 60% of the time, it works every time... I'll stop with the Anchorman stuff now (watch the movie and think of me). I know that I'm doing alright but I know it could be better. It can't be better with my current therapy. That can only happen via technology or I will likely suffer from burnout by trying any harder.

So, those points were put across and! it seems I'm good to go... good to go to DAFNE. Remember earlier when I mentioned crawling through fire? That's right! It's DAFNE time. Deep breaths. I know that it's been a great thing for many of you and in the interests of peace and ticking a box and being an ordinary Diabetic, I'm going to go through with it. And that's where I am, right now. I'm waiting for the call from the DAFNE lady, who I really hope is called Daphne, to begin the training process. When that happens I will publish Part 2. I bet you couldn't be more on the edge of your seat.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Sunday, July 18, 2021

Representation


 Diabetes in the public eye has to be a great thing, right? A diverse representation of all types of people can only reduce division, hate and normalise disabilities, including Diabetes.

Coronation Street got the Type 1 ball rolling a few weeks ago and last week Pixar joined the Diabetes party with a character in their Turning Red movie, seemingly wearing Diabetes devices. Both great things for Diabetics, particularly the Coronation St character as it appears they'll be focusing on the condition more than the Pixar movie's passing nod towards it. I hope the Coronation St character will be allowed to develop in the coming years and the difficulties of living with T1D are brought to the public attention, at least the public who still watch that particular soap opera.

Beyond the recent TV and movie rep', I've been thinking about others who have proudly acknowledged that they have Diabetes. In the mid and late 1980s, as a young boy, my only "Celebrity Diabetic" was Gary Mabbutt. Gary played for Spurs and was capped by England and he is still well known in Diabetic circles today, particularly football fans. That was it, for me. I'm sure there were others but Diabetes was a much less visible condition beyond the Diabetes clinic at the hospital.

Technology has made Diabetes a visible, talked about thing. It's forced the hand of Diabetics to become that bit more public about their condition. A pump, CGM or even a small Libre disc are physical signs which are often hard to hide compared to the sneaky finger pricks and injections, done covertly or behind closed bathroom doors. Perhaps we have more to thank technology for than simply improving the management of our condition? It's out there! WE are out there!

Not everybody uses technology, of course (despite what you might see on social media). Perhaps some will still hide it because years of conditioning can take a long time to overcome. So, representation is important in other ways. Representation by the masses (our peers) is increasing and I believe that is the most important way to have Diabetes seen by the general public, a general public which still struggles to understand types and which holds ideas of Diabetes, that are ignorant and harmful, firmly in their minds.

How you represent is individual to you, your life and your comfort zone. I speak and write about it in various places and I choose to do so using what I consider to be an effective method. Your methods might be different, of course. What is important to you in regards to Diabetes is almost certain to be different to me and others, too. A brief look through Twitter will reveal a variety of subjects, pushed as hugely important and they may indeed be that to a minority which could include you, or other aspects of Diabetes might be higher on your agenda of importance. What is important for us all is to talk about Diabetes, type if you wish, specific things relating to it if you wish, openly.

Social media is an easy place to air views and share your experiences. It's an easy place to represent D. If that's your comfort zone then embrace it and go to town! It can have a surprising, positive, effect. I'm astounded at the positive comments which have been sent my way in the last couple of years since growing a social media presence. All I do is share my experiences and views while engaging with my peers. 

We don't always agree, either! and that's an important part of life, too. To accept that others have their views and opinions on their own condition and health and subjects relating to it. It's important to not turn those times into arguments, to not bully or name-call or reduce yourself. The people who do that are not helping to represent. Using aggressive, "industrial" language does not help to represent - Do you want your children to read frequent use of the F word? Your choice, of course! I'm far from a prude and I have certainly used foul language and a harsh "tone" before. Within Diabetes, I try to keep it family friendly. That's not because I'm focused on engaging with families. It's because it's much harder to alienate or offend anybody of any age when the language is PG and the tone is soft.

I encourage everybody living with Diabetes to share their views. Talking about it is great representation for your peers and yourself. It's normal to have a health condition or a disability. Don't hide.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

Thursday, July 15, 2021

The Cost of Hypos


Do you remember the "sugar tax" of a few years ago? Our favourite sugary drinks, the life-saving drinks which we used to treat hypos, suddenly became less sweet. Lucozade, Ribena, Vimto and the other teeth rotters became less attractive or pointless if you wanted to treat a low blood sugar. Lucozade clung on to a good chunk of its glucose but it was still much reduced, meaning more would need to be consumed (and bought) to treat a hypo than before the days of the sugar tax.

Today, news reports have highlighted that an independent review of the food that we eat should be subjected to further taxes, specifically sugary and salty food, and vegetables should be prescribed on the NHS.

The story is here if you'd like to read through it.

That story aside, it has made me wonder what the cost of hypos are. I don't mean the physical exhaustion, stress and anxiety. I'm talking cash, moolah, filthy lucre. Just how much does a hypo cost? In an ideal world, nothing. Gluco Gels are available on prescription and assuming you only need 30g of carbs (3 x 10g tubes of glucose) to treat your hypos per month (my allowance) then you're golden, hypos will cost you nothing as a Type 1 Diabetic. Meanwhile, back in the real world, here are my hypo stats for 2021 so far:

At the half way point of the year (183 days, 26 weeks) I'd had a grand total of  74 low blood glucose events.  That's just under 3 per week. Of course, that fluctuates depending on a seemingly infinite number of variables but let's assume an average of 3 per week, rather than the days before CGM alerts when my hypo numbers were almost double that amount.

Hypo treatments and their costs will vary. I don't eat and drink the same thing in the same amounts for each hypo. So, what's the most common treat for me? Squashies and Lucozade! Let's do some pricing up:

4 x 330ml bottles of Lucozade are £2.70 (68p per bottle)

1 x packet of Squashies is £1.00

I conservatively estimate that I will drink half a bottle of Lucozade and eat around a quarter of a packet of Squashies for a hypo. Again, that will vary depending on many things but as an average I think that's a reasonably conservative amount. An average hypo is costing me:

34p in Lucozade

25p in Squashies

59p is no big deal, right?

3 hypos per week, though. Alright, £1.77 per week. 

Oh, £92.04 per year.

I've had T1D for almost 37 years. £3,405.48

Perhaps I'll still be here in another 37 years. £6,810.96

Remember that my hypo frequency was once double what it currently is? Yikes!

Suddenly hypos are starting to look like expensive events, over the course of my life. I could probably buy a weeks' groceries for what I spend treating a hypo over a year. And now a proposed extra sugar tax of 15% - 25%?

I know that my hypo events are a tiny number compared to some. I wonder how much your hypos are costing you? and do you agree with the proposed new sugar and salt tax? Let me know.

 Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!