When I started this blog I talked about Nico. Sometimes I still mention him and I don’t always remember to clarify that he is my 5 nearly 6 year old lhasa apso. I often just say he is my boy, my chief, my wee man. My son. I’m his mum and that is how it feels. The picture I’ve linked to is him as a 1 year old sort of adult being aloud to wander off lead in a local wild area for a bit before I got too afraid and put him back on his lead for the next decade. Or I hope decade.

 

Nico’s legs stopped working properly tonight. I don’t know when he got hurt and I don’t know how. I just know that when his ‘gran’ (my mum) got home from work he went to try greet her and he barked and was enthusiastic and his back legs just didn’t work. They dragged down the stairs in a ‘thump thump thump’ as I watched in horror. One sort of did, but the other just dragged behind. I phoned the vet at once who booked us in for an hour and a half later. I carefully picked up my boy (my life, my child, my light in the dark) and placed him on our bed where he had lain all day appearing fine as can be. He is a lhasa and he’s lazy as they said he would be. For him to lie there all day snoring is not abnormal but now I’m tormented with questions of why didn’t I see it before? When was before? What hurt him? Will I lose him?

 

The vet did not help in the way I hoped. She looked him over and his legs appeared weaker than before in the house. He clung to me and didn’t try to fight them off; a sign of problems as his usual state at the vet is to fight and one she had readied herself for after seeing his notes. The vet who saw him asked for the other vet in the building to consult. They confirmed neurological damage and immediately referred my pup to Edinburgh’s animal hospital. Normally he hates the car but he went without protest. Then he went from my arms to a nurses and that was the last I saw of him. 7.10pm 5/7/18. Just to note.

 

They confirm it is neurological. While I sit here at 4am pouring my hear out my son is in a cage of some sort in Edinburgh. I hope he is sleeping and content. I know the med student who is going to do the overnight with the animals was cheerful and said Nico had taken to him and seemed nice but…well it isn’t me is it? That student will have other things to do. Nico will wonder where his family is. Where is his maw? Where are his grandparents? Where are Senna and Doug, the other pups. It is a horrible thought.

 

Tomorrow Nico will be given an MRI…that is unless he deteriorates overnight but frankly it is 4am and my phone has not rung so I am hoping he’s dozing in a corner. It sounds horrendous to think this way but GOOD news would be that he has had some sort of stroke. A blood clot. That way will be rehab and painkillers and taking it easy. The bill will be half. We would get him HOME sooner.

 

The other outcome is he has something pressing on his spinal cord. That means surgery. It means risk of infection. It means more weeks of him trying to stand. More weeks of him in hospital away from his family. More stress on him. If he needs surgery they say he won’t be let home until he shows he can stand and pee..  All the current situations give him a 90% recovery rate but nothing is certain yet.

 

But those are good notions. It could be a tumor and then there is nothing they can do. It could be something else and I’m confronted again with prices and is it worth it for him and is he in pain. At the moment money is an issue I will deal with later. Nico’s grandparents love and support him fully.  I will gladly pay each penny of a payment until he dies of old age if it means I get him another ten years and he’s an old grumpy guard of a lhasa still going ‘hey! oi! dog on my street!’.  I would happily give up holidays anywhere for a week hanging over the back of the recliner with my bud surveying the world.

 

But for my bud, my chief, my lad, my wee man, my Nico, it would be best if it all goes the easiest and cheapest way tomorrow. He’d be happier and healthier. But if it doesn’t boy, maw’s here 150% as long as it won’t hurt you and you have quality of life. I’ll do all the shifts. I’ll break my back to fix yours. Maw loves ya boy.

 

 

 

(1 hypo and 2 hypers from emotions so far. I dare anyone to hold it against me)

sets and knowing if they work

 

I think a simple solution would be to treat the gauze part so that if it came into contact with insulin it would change colour. It is a simple answer. There is a lot of stress and anxiety that comes with a set change for many people and it is heightened when your blood sugar is higher at the time. A million questions go through my head. Well no, not a million. Only one that matters; did that work?

 

In the past two days I have done 4 5 set changes. 2 3 sets I was 100% sure were faulty and leaking. 1 was because it was time to change it. The fourth was just me getting so worried about if it was working or not that I changed it anyway. In the several hours since I have been staring at my site, fretting over bg and ketone results and generally being anxious and wondering if it worked because my bg won’t come down. Now, a lot of that higher bg will be because I am anxious about whether it is working. Another huge factor is this horrible virus that has proved hard to control even with large corrections and 200% basal rates.

 

I truly believe that a simple change in how we the companies make the sets would remove a world of stress from the situation. It would also lessen the likelihood of ketones and high blood sugars. Some diabetics are very quickly aware that a site has failed because they have a flatline the majority of the time. A lot more diabetics find it harder to tell so easily and things like illness can complicate matters. So can the high temperatures of this weekend, the humidity choking my town and other day to day diabetic issues.

 

I do not want to be trapped in this anxious cycle. Injections were far simpler and safer in that regard. Insulin pumps come with volatile possibilities that we are all warned about.  I think it says it all that if my level goes above a certain number the pump itself suggests I take an injection. Feels to me like it supports the theory of its own failure on a far too regular basis. Of course, if I do take an injection I am even more unsure if the pump is working fully or not. A dropping level could be the pump working with the injection or it could solely be the injection. A rise a few hours later could be that the injection has run out or it could be that I’m ill and I need another correction and that is a normal part of being ill or it is that the pump has not worked for hours and the injection has only masked the problem but there is no way for me to tell. Just have it turn purple if it gets insulin on it or something. Simple fix for huge problem.

 

edit: I checked my bg straight after posting and was alarmed to find a 24. Took a bolus. Gauze absolutely wet this time. Sigh. Injection it is. So I guess around 1am or 2am I’ll know if the new set is working as injection will be out the system? Oh and then get up 6 hours after that for work. Mind I need between 9 and 10 due to fatigue from the gremlins. Joy.

shiny new pump

 

Well, there it is. The new pancreas. The minimed 640g. I took this picture within a couple of days and this is me just getting around to blogging about it. Oops. I am not as good at reviewing as other blogs around here so I’m just going to do my usual rambling and it just happens that it gives some insight into this little machine.

 

Getting a 5.4 was difficult. I have had to get used to this pump and how it impacts my glucose levels. Slight tweaks were made to basal and bolus settings purely because I got this pump. The animas vibe delivers insulin the more traditional method of bursts of insulin. This was primarily the cause of the sets flooding and me not knowing how much insulin I got and resulting despair I’ve spoken about before. The minimed gives insulin at far slower pace (unless set to go faster when giving huge amounts such as 50plus at a time in some type 2 diabetics for example) which is more like how the pancreas naturally secrets insulin. I think this has impacted how my body absorbs the insulin and the resulting glucose levels. I still see peaks after eating but they are not as severe and I wonder if this is why.

 

I do like it being in colour. It is a little thing but something that just adds a bit of cheer and makes being part android feel more acceptable to my mental health. It really hurt me when a friend made comments on how my old pump looked old and backward given current technology and how smartphones ect look these days. The important thing is having it, not paying for it and it working. That does not take away the importance of feeling comfortable with it though and in that part of diabetes it really is the little things. It is the same way I used to pick blood testing kits on how small it was and therefore how little space it took up in my bag. I didn’t care what it did back then; I cared about looking as normal as I could. I’ve moved on from that point mostly but…colour is still nice. It is also more helpful in being accessible for others.

 

This pump does not come with lithium batteries but alkaline ones. At this point in time it is wonderful to still receive those batteries for free but I doubt that will last too much longer. Anyway, the animas could take either but I usually kept it in lithium ones meaning it lasted. This pump runs out faster so having a coloured battery gauge that is very noticeable at all times is reassuring. On the other hand, I do not like the coloured gauge for when your insulin is running out. It turns red when there is around 70 odds units still in the pump and that could be days of insulin for me. At one point I put insulin in the pump with a new set and it remained on red from then until the next change. That unnerves me a lot.

 

I have been very unwell recently which has put off me learning about more of the pump’s functions. When the group I got mine with received our training it was basically ‘here is how you make this pump do what your old one did’. There is a lot of things I need to learn and practice with but I don’t want to do that until I am somewhat stable for obvious reasons. When I was sick getting my numbers out of the 20s was pretty darn hard. This pump allowed me to fill more insulin up and be far more flexible with blasting up the basals without worrying about changing sets. I admit I kept a set in a day extra because I simply did not have the spoons to face changing it. I could hardly face a single slice of tast. And that is ok. Things happen. I am 100% sure that the diabetics who change their sets on time all the time are the minority. This pump allowed me that flexibility while ill as I had enough ‘gas in the tank’ as I like to put it to wait until I was more with it.  So it still confuses me a lot when it makes noises and I don’t know why and there are whole programmes I have yet to faff with yet  but I will get there.

 

Sidenote: bless the libre when ill. Saved so much finger pain.

progress over the years; the little things edition

Image shows my contour link usb charging on a usb port on a train from Edinburgh to Dunblane.

 

Wizardry. Before I got my medtronic I had another contour meter that was charged through its usb port. I had it for three years and I tested many times a day. I charged it three times. Three. It is amazing. It is not like previous meters needed a lot of batteries though. When you think about it a test only has the meter turned on for a matter of seconds. Start to finish probably has it on 30 seconds maybe? A Minute max surely. That is an average of course.

 

The thing that is amazing about the current set of meters is what happens when the meter suddenly goes ‘um battery please’ after months of it plodding along. Panic! Ahhh! Well, not anymore! Now you just shove it in a UBS port or a usb plug. This picture was taken the day I got my pump and meter combo and I charged it on my way to work with great amusement.

 

This is progress though. In years gone by it really was panic. Meters ran on batteries that were hard to get a hold of and frankly were expensive as far as batteries go. Meters in the 90s could also be really hard to get into just to make things more fun and interesting. Not.

 

In all seriousness though the little disk batteries that powered most meters were hard to track down. Only one shop in my town had them and not always in stock. Finding the batteries was hard work . This was long before the days of poundshops with walls of batteries at a pound a packet in all sorts of shapes and sizes. It is easy to look back and think ‘why not stock up?’ but you have to remember these batteries could be a fiver for one or two batteries when a whole pack of AAs were only a few pounds for example. Having the sort of money to create a supply in a cupboard somewhere was a privilege not afforded to all diabetics. I certainly remember having the blood ready on my finger and shoving the stick in, getting the reading and pulling the stick out at lightspeed so the meter was on the shortest amount of time possible because we couldn’t afford to get batteries until the weekend and the notice was flashing more often.

 

Of course, usb charging relies on a steady electricity source which comes with its own problems but for the majority in developed world is a steadier and more reliable set up. It is vital that there is some sort of battery powered meter on the market for those who can’t get  a reliable electricity source so they are not relying on old and less accurate technology.

 

All in all though is it not amazing? Low battery warning and I just pull my phone charge cable out and shove my meter in? Then it doesn’t bother me for a year or so? If it has a low battery when I am out and about I have my powerpack I um sometimes remember to have on me charged up.  The libre has a usb port so I don’t need a plug as such. I could have charged the libre on the same usb port shown in the picture from the train.

 

It is quite lovely.

important

act act no wait wait

Libre and the pump. So far I have not got them to be the best of friends.

Thing is….there is a 50% chance of either being right according to my logbook. That I have not filled out for three days, shut up.  Libre can insist that I am skyrocketing upwards and pump says ‘yeah and?’. The flatline is not appearing. It is no use in having the numbers if you don’t have the tech to implement the requirements. Or as in my case the body that follows the rules that allows the tech to work and create the flatline. Of requirements.

 

Sigh.

 

At times it turns out that Libre was right. I was climbing. The insulin on board was not going to manage it. That does not mean it feels safe or is safe for me to overrule the pump and add more insulin. Just as many times as the libre insists disaster awaits the pump pulls it back under control and I’m fine by the time my insulin is out of my system. More anxious perhaps but fine. Sometimes it even goes further offtrack and the libre’s insistence that all is awry is rejected soundly by the hypo that appears when the arrow turns suddenly, the pump finishes its delivery and all goes to pot.

 

It seems a lot of this would be solved if they could talk to each other. If the libre knew what was on board.  I half expect my pump to explode with a moody snap of LEAVE ME ALONE when I keep informing it of my blood sugar as libre goes nope nope nope and it goes GIVE ME A F-ING MINUTE TO WORK.

 

I don’t know if tomorrow will change that. New pump. New basal capabilities. A pump that can talk to its meter that at the time only talks to my fingers.  On the one hand I feel like getting all this new tech is exciting and mastering it all at once will be best as I will have all the tools I am going to ready and there will be no more hefty changes on the horizon. The other hand very much feels full and at risk of dropping things on the floor. Diabetes is not my only health condition or disability. It is only one of my many endocrine gremlins never mind the other parts of my body falling off. For every statement of ‘but there is this app’, ‘upload this’, and ‘have you tried writing this/printing that’ is one more sigh from me. I am tired. Twenty years of tired. Chronically fatigued from too many things not working in my body and frankly I do not have the spoons to put in as much as others do. The online diabetic community can be a wonderful friend and a horrible judge at the same time; even from people who would be horrified to think their statements could ever make someone feel like they are failing.

 

It is always going to be hard to see others and think ‘well, why can’t I get my shit together like that?’. Added to that is the side panic of ‘what if none of it works anyway’? Truthfully this is the internet folks and I do not know how much of the diabetics I look at in wonder are showing their true reality or a part of it. It does not matter. No one has to share everything or nothing and they certainly don’t need to write some sort of disclaimer to explain where they fall on the scale. It just happens that the bubble can be a hard place to be, especially when yours feels like it will pop at any moment.

 

Guilt is a huge issue right now. I know my GP surgery is struggling right now and here I come with yet another prescription change. I kind of don’t want to set myself up for yet another set of strips for the new meter because effort. Because tired. Because No More Spoons. But then I feel guilty because I am sure loads of folk would love the metronic combo and how accurate it is and everything they can do with each other. I nearly had a meltdown in the surgery today ordering libre sensors because the lady at the counter went through so many things trying to work out what  I wanted and I was like ‘no not that. no i don’t use them anymore. no he said he had taken that off’. It took ages and it felt like she was going through the whole system looking for a med but it was only my own history and that is just a kick in the gut.

 

the pump saga: a new hope

In February I wrote about how I felt about metronic replacing my animas pump. I was not happy.

Now? Now I am happy. In fact I am really desperate to get my mitts on my new pump. The animas is driving me to distraction. The pump itself is fine. It is grand. It does the job. Or it did. My diabetes has flipped its own table again and decided on a new rule-book and I’ve not finished reading it all yet. It does appear those wizard things will be useful though.

The problem is all the things that come with the animas. The cannulas and the tubing. If I need over maybe 9 units of insulin at once I stare at my pump, sigh, and cancel everything. I then have to put it through not as an ezCarb or ezBg but as ‘normal’ bolus in smaller amounts. Anything over 9 will flood the cannula and I will get a couple of units while the rest pools in the gauze. Too often I did not realise this, trusted my pump, and had unexplained highs a few hours later only to realise the area around my set was damp and I could smell insulin.

 

No one should have to life with that uncertainty. If the pump says it needs to give me 13 units at once then it should be able to do so without issue. This can happen on new sets, day old sets or sets on their last day. So, it is not like I can say ‘well I’m a 2 day person’ and change earlier. Of course, having to bolus this way leads to questions at the hospital that accuse me of being a failure with the machine. ‘why did you just bolus with no bg or carb info’. Well, I didn’t. So jot that down. ‘what are you doing wrong with the set?’ Nothing. I’ve been at this a while. I know how to put a set in.

 

I am tired of staring at white material hoping it doesn’t turn gray due to getting wet. I’m tired of smelling the horrendous stench of novorapid. I’m tried of not knowing if I got any insulin or how much. I’m sick of going high waiting to work out what I did get. I know that many who get this frustrated take a pump holiday but I can’t. I have my pump because I cannot function without it. Without my pump I was so unstable I could not leave the house alone. I could not work. I was utterly exhausted and the sickness from my dawn phenomenon lasted all day rather than the couple of hours it does now. Ketones were a regular part of my life. I simply can’t take a break.

 

The thing is? The metronic may be no better. That would be horrendous but at least while I don’t know that I have hope. I have a date in place where I think ‘this could get better’. I officially have a date too. Later this month. It is hope.