Diabetes Blog Week 2014 - What Brings Me Down Wednesday

May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

Click for the What Brings Me Down - Wednesday 5/14 Link List.

I could write a book on this topic. It would be my topic of choice if I did write a book about D, something which I would seriously consider in the future. 
There is so much to come to terms with when you have T1D. It's overwhelming. The testing, injecting, the carb counting, the supplies, what to carry with you from now on, the testing, the injections etc. Diabetes can be less of a medical condition and more of a constant freaking annoyance. Those things I mentioned are really just the practical side of it. What is it about these things that turn Diabetes into an emotional waterfall as well? I think it's the idea of living with a chronic medical condition. Knowing, and getting used to the fact that this is your forever. There's also something about knowing that everything you do may possibly impact your Diabetes Management. Want to exercise? Have sex? Relax? Have more sex? Yea, they all can affect your Diabetes in some way. OR. They could not. It could be that some of the things you do, don't actually change anything. It could also be that the one piece of exercise you do on Monday, can have a completely different impact when you do it on Tuesday.

I could go on and on. It's relentless. Sometimes you can figure it out. Sometimes you know that you've incorrectly counted the carbs in a meal. Sometimes you don't. Sometimes no matter how much investigation you do you'll never know why you have that wacko blood sugar. Just writing this blog post has made me tired. Living with it is even more tiring. 

There's also those wondrous times when the physical impact of Diabetes can cross over into the emotional impacts - those high or low blood sugars that make you snap, cry, yell. The emotional side of Diabetes is very very very real. But why? For me, I've swung between depression, acceptance, a fierce need for independence, a recognition I need help. I'm fiercely independent. There was a time sometime after starting University when I discovered that if I didn't tell people about my Diabetes I wouldn't get all those over the top worry warts all of the time. So I stopped sharing with people. And then it got to be an obsession, going so far out of my way to hide it from people that it was ridiculous. Going to my bedroom in my very own home to test my blood sugar or inject because I didn't feel comfortable doing it in front of my flatmates. 

It wasn't a healthy, emotionally stable way to live. What changed? I did for one, my work load got lighter and I really wanted to tighten up my management. So, I started seeing my CDE at the local hospital and we worked on the puzzle of my Diabetes Management. I did some googling and found the DOC. There's definitely a causation between my better controlled blood sugar levels and my discovery of the online community. But I think I was ready to take a leap and change my mind set. 

Diabetes will always be relentless but it is a part of me, not some medical condition I have on the side. Once I accepted that it paved the way for better things. 

Pharmac and Insulin Pump Funding concerns

I'm worried about the funding for my insulin pump, or more specifically the pump consumables. As far as I am aware, an application for funding was sent off in July/August last year. The application listed the last three of my HBA1cs, the lowest of which was 73 in the new units, or 8.8%. I received 9 months of funding for pump consumables in August and started the pump in October.

In the middle of last month (March) I had an appointment with my CDE. My A1c was 64 - or 8% in the old units. It was actually the lowest it had been in my 8 years with my current District Health Board. I haven't always been so intensive with my management. It was interesting to look back on those results, there was a couple of results that were so cringe worthy that I didn't want to see but for the most part my control has stayed in the 70s for the past 8 years. I hadn't realised that so seeing that 64 was even more of a win. What's more, is that I knew I could do better than this. In February the average on my meter was about 12.5 mmol/l, I had a couple of unfortunate experiences where my site or tubing pulled out so I woke up in the 20s with ketones. I was also using teflon cannulas with my Animas Vibe pump and found that on the 2 or 3rd day I would sky rocket in my BSLs and it would take so much insulin to bring them back down. When I switched to metal cannulas, the results were amazing. The March Average on my meter was 8.5 mmol/l - which would equate to about a 53 HbA1c. So at that meeting, my CDE was a bit puzzled at what she could do to bring down the 64 lower, based on a few days worth of records that indicated I was running pretty good averages. I explained that I'd changed cannulas and was certain that the month of February would be artificially putting my Hba1c higher than it was. She was happy with this, I was happy and I left feeling positive and overwhelmingly happy at the pump. We organised I would get an A1c test done in yjr beginning of May and that my CDE would put through the application for continued funding in Mid May.

And now we come to the month of April. The average on my meter is 11.1 mmol/l - which would equate to an Hba1c of 70 or 8 %. To qualify for continued funding I need to show a 10 mmol/l drop to a 63 I was on track for this in March but now? I'm scared. I'm been trying to figure out the reasons for the increased Bsls - I had been extremely busy at work, I had a family bereavement, I thought I might be getting a bladder infection...many things which could contribute. Freaking stress. So I'm scared I'm not going to qualify for funding.

So my plan of attack is:
- Increased exercise
- Recording BSLs and sending them to my CDE
- Healthier eating

It looks easy when I put it like that. I think it's been working though, I tweaked my Insulin Sensitivity factor a couple of days ago and I am noticing lower morning BSLs. I feel a lot better writing this all out and there is another thing that could be helpful to me. I received funding in August last year but didn't actual start on an insulin pump until October, so in theory I haven't actually had 9 months of treatment on a pump. My CDE has said that will be enough to get an extension, so I imagine that's the next step.

It's nerve wracking thinking about all of this and it has been on my mind a lot. Writing it down has been cathartic for me. If there is any one else having trouble with continuing their pump funding I would love to hear from you.

S x

Hit with the Sickness

It's come to my attention that I need a new sick day plan.

To be more precise, I need is an actual sick day plan. I haven't really had one before. My plan is the past has been "Don't get sick" and that has worked. I think I've had antibiotics once in ten years. For the most past, infections, the flu and colds usually pass me by.

However, not so much with this recent flu/cold/sinus infection. I've felt terrible and my levels have been going sky high and haywire. When my ketones threw out 0.8 I was panicking a little bit.

Cue: Panic

Physically I was feeling fine (except the head cold and blocked nose). After some food, fluids and insulin the ketones had come down to 0.1 so I took extra Lantus and went to sleep. I made the decision to not go to the Emergency Department for the 0.8 worth of ketones. To me, it made sense to keep hydrated and wait it out a bit. The next morning I woke up at 0.4 indicating that something was still going on in my body. After breakfast they'd come down to 0.1. Since it was working hours I thought I'd call my GP for advice. I've never really had the best of faith in my GPs - see my blog post here. But since that post I'd decided I would try and use my GPs to my advantage. Incorporate them in my medical support team if you will.

The GPs advice was to go to the Emergency Department. I thought this was pretty stupid given they had no idea of my level of ketones or the fact that I was sitting at 0.1 which was in fact within the normal range of ketones. Green even.

It clearly says that reading under 0.6 mmol/L are in normal range....

So, I trusted my gut instinct and didn't seek further medical attention. Reasons why I didn't?

• I was still in normal range - In the green if you will
• I wasn't vomiting
• My levels were high but not super high (10-13mmol/L - am currently running my levels higher to claim back some hypo unawareness)
• The insulin was working (As evidenced that morning with breakfast and the night before when I was at 0.8)
• I wasn't feeling like I was in the onset of DKA, I've been there once and the symptoms aren't something I'm likely to forget

Reasons why I would have gone?

• I had high ketones the night before (0.8) and they showed up the morning after (0.4). That was what was worrying to me. 

So I didn't go and was lucky enough to see this number of ketones later in the day:

Relief

It was a scary 24 hours. I've heard a lot of people going into DKA with pump failures and infections/viruses etc. I was terrified that I was coming down with some hideous bug and this was the start of it. 

A couple of days later I emailed my CDE if we could talk sick days at our next appointment and told her about my recent time of it. Her response:

"I think you have managed recent illness superbly well and plan to go to ED if remained ketotic entirely appropriate"

In my own heart I knew that I had acted appropriately, I just felt better when I was reassured that by someone who is a specialist in that area. 

I've never really felt much sympathy to people that have colds and coughs. One of the reasons is that I hardly ever get sick so don't really have empathy to their situation. I think the other is that I manage with this chronic medical condition every day and is that when I get sick, where others might be able to wait it out with chicken soup and ice cream, I'll have to go to the Emergency Department to get better. I'd prefer the chicken soup thanks. Hold the ice cream though, not too much of a fan. 

How does everyone else manage their sick days? Would love to hear about other experiences :)

S xx

GPs versus Diabetes Specialists

I've never really treated my GPs as my primary care physician. I've always felt that since a lot of them don't have a clue about diabetes I shouldn't waste my time with them. After all, every aspect of my life is connected to my Diabetes. Things that are easily treated by a GP become complicated with Diabetes. An eye infection for one patient can  mean much more to a diabetic.

When I began having trouble with numbness in my left hand, I naturally thought of Diabetic Neuropathy and mentioned to to my Diabetes Nurse Educator. Her recommendation was that I should to talk to my GP about it and if necessary get a referral to see an endocrinologist. I'm not sure why but her comment really made me stop and think. I work in a job where I refer people to their GP if they are having issues with other health providers, so I should have confidence in my own GP.

I need to find a GP I like and stick with them. My current Medical Centre makes appointments with the next doctor that's available so I've ended up seeing about 5 or 6 different ones. My latest appointment went fine and I was happy when the Doctor mentioned his friend uses an insulin pump. I thought well, hey here is someone who I know has some form of experience of Diabetes in a real life sense. I made up my mind to ask for this doctor next time.

The numb fingers are most probably not Diabetic Neuropathy which I was happy to hear. The GP I saw reckoned it was a mild form of carpal tunnel syndrome. He sent me off with a few blood tests that included words like a full blood count, thyroid and liver functions. I was happy to do it, mostly because as someone with an autoimmune condition I know I'm likely to get another one. I don't think I've ever had my thyroid checked before? Not sure. In any event, I haven't heard back from the GP which means that nothing has showed up on the bloods. My GP has said that if I am still feeling symptoms to go back and get it checked out again but that he thinks it'll go away. It hasn't but it isn't painful so is something I can wait to mention until my next GP appointment.

I like to think that over time I'll build up trust and confidence in a GP. At least now I am trying to go into appointments with an open mind not some mantra I've carried around with me for years.