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Wednesday, 17 May 2017

Diabetes Blog Week Day 2 - The Cost of a Chronic Illness

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen.)

Budgets have definitely been on my mind lately. I just bought a house (I will stop talking about this soon, I swear!), and am now the proud owner of 30 years of debt. Saving for our house deposit was hard and required some cut backs. It didn't leave us a whole lot of wriggle room for frivolous expenses and I had to include my diabetes as a frivolity.

Where I could cut corners in diabetes expenses I did. Whilst not recommended, my sets averaged about 4 to 5 days instead of 3. I reused reservoirs until well after the writing had disappeared.

I cut back on the amount of blood sugar testing I was doing. My average went from around 10 tests a day, to between 3 to 5.
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$170 - a pretty normal chemist bill for a T1D on an insulin pump - This was for NDSS supplies only, no extras

I rationed 8 boxes of CGM over one and a half years (I'm now on my final box from a subscription I started in January 2016). Now that I actually have to pay back a mortgage, CGM is out. Luckily, my my mum helps with that cost, but I can no longer afford a subscription. I have calculated that I will be able to get 3 boxes over the course of 12 months, that I will mostly use for when I go away for work, as I am hypo unaware at night. I will have to start setting alarms for sleep, and just deal with being tired at work.

The consequence has been worsening glycaemic control. In the world of diabetes, money can make looking after yourself a whole lot easier. I went from A1C's in the perfect range, to the 'average to sub-optimal' range. I dream of the day when I will have good control again, but that requires tools I can't really afford right now. Maybe when I'm retired.

Things aren't about to get any cheaper. Private health insurance prices and private doctors fees rise every year. There are talks of a sugar tax - for me that will be yet another increased expense, and probably result in further worsening glycaemic control if I have to try and increase my BGLs to not have to pay for the luxury of treating a hypo. I have severe gastrointestinal intolerances to jellybeans and lollies - and can only have juice or soft drinks to treat my hypos. I can stomach glucose tabs - but these cost an arm and a leg to get into Australia.

Its hard enough as a young person trying to become independent, own a home and even consider raising a family, without adding the expense of a disease like diabetes on top. Most people my age are struggling, and they don't even have an insulin habit to support. If I said a future with diabetes, expense-wise, didn't scare me - I would be lying.

Diabetes Blog Week Day One - Diabetes and The Unexpected

I can't believe it's Diabetes blog week again. Where did that year go? 

Click here for the Diabetes and The Unexpected - Monday 5/15 Link List
Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?  (Thank you, Heather, for inspiring this topic!)

The way that I understand Morty (my diabetes), in the little personality that I have given him, is that his life motto is 'Expect the Unexpected'. Which is actually just a life motto, really. What does go according to plan in life?

I don't know if you can ever truly make diabetes bend to your will and become predictable. Even if I do the same thing everyday, there are still slight differences that can change the course of my day and diabetes. Some days there are only slight varients and my usual diabetes routine works for 90% of the day. Some days I have no idea which way is up and which way is down and diabetes comes along for the ride, and I take it as it comes.

I moved house last week. There were lots of unexpected things to come out of that. I didn't expect to be standing at my front door at 5pm in the afternoon, yelling obscenities and in a flood of tears because I couldn't figure out my new locks for a solid 10 minutes. I didn't think that shoulder barging the door would work to finally get in, but it did - and 20 points to Hufflepuff for not actually breaking the door at all when I did that. I wasn't really counting on inheriting 3 goldfish that the previous owners just kind of left for us to inherit (at least they left the fish food?!). I didn't account for how busy I was at work, and not being home until nearly 10pm each night for various reasons, and how that might affect my eating patterns. I didn't plan to lose all my diabetes supplies in the multitude of boxes in my garage, and not having any spare sets to change out to.

All part of the fun of moving on in life, and just going with the flow and dealing with things as they happen. The locks? We talked about which order we will lock them in so I can get into the house every day. The Goldfish? I'll keep feeding them until they die. Its not hurting me to keep them, so I guess I have Harry, Ron and Hermione now. In getting home late each night, to an unpacked house, I have just had to adapt to eating the best I can on the run. Diabetes supplies? Thankfully, I know other diabetics who have come to my rescue, then made it my mission to find and unpack that box first.

I don't really know if I can prepare for anything unexpected - I just make sure I know the processes for dealing with it. The unexpected high of 30 last week that came when my set stopped working after lifting boxes was dealt with quickly by injection until I could find a new set to change out to. Even if I dont have a spare set, I always have a pen and needle tips. I always have a juice, and I always have my glucometer and strips. Those 4 things mean I can deal with anything that comes my way.

Monday, 8 May 2017

The Diabetics First Home Owners Guide

A step-by-step guide to owning your first home, despite the crippling debt that diabetes forces upon you

  1. Save all the money. Coles brand jellybeans are now your best friends (even if they cause some weird digestion issues), and its time to get comfy with the fact that your pump reservoirs are reusable almost indefinitely. Seriously those babies are still good even after the writing has worn off. 
  2. Being poor means you have a lot of time to not do fun things that make you happy and relieve stress, unless all your friends happen to love sitting on your couch and binge-watching old Buffy episodes as much as you do. Take advantage of this joyless time in your life and find first-home inspiration. View display villages, open homes and auctions.* Don't forget to take plenty of hypo treatment because you will walk far more than you realise, and try to do this in winter, not summer. Temporary basal rates are your best friend at display villages.
  3. You have scrimped and saved and now there's a small but sizable number that has you nervously checking your bank security every day and interrogating your partner on why they used the account to buy chocolate (it turns out its actually your chocolate that you needed to not fall into a pit of despair - Hey, that's years worth of savings and bad Coles Jellybeans right there!). You probably didn't make the 20% recommended deposit but is that even possible these days? A good mortgage broker can still find a way to make it work with some obscure sounding bank that will allow you to purchase the house of your dreams a house that you are vaguely comfortable living in.
  4. Its time to get serious about finding your new home. Expect kitchens to feature prominently in your dreams. Pro Tip: put chocolate bars in your glove box. These will come in handy at around midday when you feel sad about all the houses you have looked at that are not really 'you' and are still somehow out of your price range. Don't talk to other people at the open houses. They are all baby boomers who paid off their first homes in 7 years back when homes were affordable and are purchasing their 12th investment home.
  5. Congratulations! You found a house. Total land size is probably less than 400m2 and at least an hours drive from your place of work, but you can hammer nails in the walls wherever you want and no-one can tell you how clean to keep your venetian blinds. Now to start the extremely tedious process of submitting your offer and waiting for it to be accepted. Expect lots of blood sugar changes. Good diabetes care is waking up alive for the next month until settlement date.
  6. Your offer has been accepted and you played hardball right back to the sellers real estate which was very difficult on your BGLs. Time to relax for 5 seconds, and then start packing. Everything causes a low BGL right now and the closer to settlement date you get, the worse your diet might be. Pizza and the 6 hour later blood sugar spike is a given the night before moving. Everything's packed and you are too physically and mentally exhausted to make a real dinner.
  7. Settlement day will probably look something like this: waiting for settlement to happen = Anxiety, high BGL, feel sick. Moment you hear settlement was a success = sudden drop from BGl of 22 to 3 in 15 minutes flat. Much whooping and air punches. Try not to drive hypo to collect your new house keys, no matter how excited you are. Its a good idea to know where your new property is actually located and at least have enough battery to navigate you there if you don't. ** 
  8. Time to move! Today you will want emergency hypo treatment everywhere. Stash it in your car, your bathroom cabinet, the pockets of everyone helping you move, anywhere and everywhere that you might go. Look forward to your final night of take-out and the chance to get back into regular routine again.
  9. You report to the bank for the next 30 years of your life. Try not to die of anything remotely related to your diabetes in this time, because that leaves your partner in a bad position financially. Its a good time to make an agreement that if you die, your partner should make your death look as non-diabetic as possible, so that your insurance will pay out. Yeah, there's that lovely bit of discrimination we get to go up against.  

*You probably went to all the nice, big display homes with awesome upgrades and inclusions or the open homes in nice neighborhoods. You can't afford these and diabetes. Lower your standards or get rid of your disease. 
**Yes, I did pick up my keys, forget where my new house was and not have enough phone battery to navigate me there. I did follow the signs back to the city so I could pick up my husband who is much, much better at directions, so its ok, I didnt die in the wilderness of my new suburb.