In an attempt to control the diabetes rollercoaster, I’ve been working closely with the Diabetic team at the Lower Hutt hospital. So far we’ve:
changed my medication
analyzed my food intake and
reintroduced carb counting (in my opinion something all Type 1 diabetics needs to know about, I'll share more in another post).
I've even tried cutting out all sugar from my diet and eliminating caffeine for three months after reading The Rushing Woman's Syndrome, by Dr Libby Leaver. (I’m willing to try anything!)
Unfortunately my Blood sugar levels continue to be all over the place, so in May we submitted an application to Pharmac to fund an insulin pump. (Pharmac decide which medicines and related products are subsidised for use in the community and public hospitals in New Zealand).
I soon discovered my application had been declined. What now…
We were going to appeal it! It was time to stop putting on a brave face and make sure Pharmac truly knew the effects this disease was starting to have on my health and well-being. I began writing, as did my mum xx I had nothing to lose.
I am asking that you please reconsider my application for an insulin pump. I have been a diabetic for almost 16 years and for the majority of that time I have had pretty good control of my blood sugar levels. Up until recently diabetes has never stopped me living life to the full or prevented me from doing things.
Over the last 12 months my blood sugar levels have been all over the place. 12 months of vicious lows in the night followed by extreme highs is taking its toll! I am exhausted. I live a busy life! I am the mother of a beautiful 4 year old, my husband and I have a small plumbing business, I have started a new job as an instructional designer and am studying extramurally towards a certificate of adult education. My health is jeopardising all of this!
I had a serious low Christmas Eve 2014 just as I was getting into bed. I tried to fix it and my sugars levels kept dropping! I was frightened to go to sleep in case I didn’t wake up. It was at that moment I knew I needed to try an insulin pump, otherwise Diabetes would win. I have followed the rules, listened to all advice and am getting nowhere. I was too scared to drive for a week at the end of last year, in case I fell asleep.
At the beginning of the year I left a fantastic job as a facilitator for Westpac. The regular lows in the night, high sugar levels and exhaustion left me feeling as though I could no longer work 40 hours a week. I now work part-time.
I have been caffeine free since February. This was another attempt to reduce the tiredness. I no longer wake up to the lows in the night instead wake up with morning blood sugar levels in the high teens. I then spend the whole day trying to correct this, will no luck.
I have been to my local GP to check if there was anything else happening, that would explain how I was feeling. I hoped they would find something, anything that would finally explain what was going on. The blood tests came back all clear; however they did recommend I work on my high blood sugar levels!
It terrifies me that the brain fog, dizziness, exhaustion, regular infections and headaches I experience now are just how it’s going to be. I have tried everything. I want to be able to have fun with my family during the weekend, but instead I find myself having to rest and recharge from the effects of crap health. I am 30 for crying out loud.
We would love to have another child one day; however with my blood sugars like they are we will not take that risk.
I would like to add my comments to the review of decision regarding a subsidised insulin pump for my daughter Ruby McGill.
You based your decision on the fact that Ruby has only accessed emergency medical support once this year. Instead of seeing this information to support your belief that Ruby’s health must be such that she doesn’t need extra support, I would ask instead that you consider Ruby as a whole person who refuses to be treated as an invalid, and so has done everything she can for the last 16 years to try and stay out of the emergency departments. So rather than thinking ‘she doesn’t need this’, consider ‘if she has tried so hard to not need this, why is she asking now?’
Ruby’s profile is of a hard-working, independent young mother trying to maintain wellness, a family, a future career and a new business while at the same time dealing with a chronic illness which is steadily becoming harder for her to manage. Ruby’s hospital records don’t show the determination which has seen her test herself at aged 16 via a Spirit of NZ Leadership sea voyage for 10 days, a 42 day Contiki camping trip across Europe at age 21, travel with work, facilitating training sessions, being a mother etc. Whereas other diabetics may have given up the struggle by now and become invalids, Ruby has continued the fight against being defined by diabetes. Of course she wasn’t going to ring the ambulance, or turn up at A and E. If she did, who would mind her child? Who would finish that training session? Who would run that meeting? Supported only by a bag of jelly beans she has continued on.
So rather than punish Ruby for not giving in thus far, and burdening the health budget with frequent emergency medical support, how about rewarding her for her dogged determination to save the taxpayer dollar by trying her hardest to manage her own health. She’s a person who doesn’t ask for help, but is saying to you now “I can’t do this alone any more”. So please reconsider.
Of course if you won’t change your mind, please also consider the consequences both to the health budget, and also Ruby’s quality of life. This application will of course be repeated next year. And by then, Ruby’s use of emergency medical support will have increased to a point where it should be easy for you to make a decision in favour of providing an insulin pump. I ask you to think proactively and help Ruby now rather than reconvene next year to reactively provide the ambulance at the bottom of the cliff.