Use Your Words To Protect Health Care

Did you know that liquid DayQuil is an excellent chaser for Robitussin?

Day 4 of a cold that won’t quit.

Day 2 of Diabetes Blog Week.

I worked all day teaching a classroom of kindergartners and explaining to them for the second day that I couldn’t high-five, shake hands, or give hugs because I didn’t want to share germs. One little friend suggested we just give each other thumbs up throughout the day.

Is my nose really that big? Don’t answer. Gosh I hope the bags under my eyes were not that prominent when I was teaching. And this is why I don’t take selfies and I mostly stay out of photos unless they are with someone cooler than me. But I have no cat photos and a photo of DayQuil was more work that a quick selfie.

On to Day 2 and the Cost of a Chronic Illness.

And now a photo of me giving the thumbs up seems insensitive because chronic diseases are ridiculously expensive, so much so that some people just can’t afford to stay alive.

Here is the actual prompt taken from the Diabetes Blog Week FB page:

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?
You can find a list of today’s posts here: http://www.blenza.com/linkies/links.php….

So far in my adult life I have never been without insurance.

While in college I was under my fathers policy.

While in the Air Force I was covered by the military (taxpayers, thank you – having my daughter while active duty cost me $37 which was the cost of my food while in the hospital. I had to pay it because technically the government gave me a food stipend in my pay, so if I didn’t pay for my food while at the hospital it would have been double dipping in the taxpayer funds).

After finishing my tour in the USAF I was under my husbands insurance policy through his private employer and I had both my boys while he worked for the same employer. Over the 12 years he worked for the same employer we watched our copays increase, our premiums increase, our deductibles increase, and our in network physicians decrease.

Then my husband was part of a huge layoff – basically the company thinning the higher paid employees in favor of the lower paid employees. Technically he somewhat volunteered to be part of it. He was ready for a career change and knew the severance package would be enough to get us by while he searched for another job. With the layoff we were invited to purchase COBRA. Basically COBRA allows individuals to continue on with their private company insurance for a period of 6 months by paying the premiums in full themselves. This was a huge deal since we had two children with diabetes at the time. NOT as big of a deal as a lapse in coverage could have been prior to 2012 or could be in the near future. (I rarely share any political opinions – actually I have never shared a political opinion on my blog – but anyone living with a pre-existing condition or who has a child or loved one with a pre-existing condition is very likely aware of the current American Health Care Act bill that recently passed the House floor and is due to be voted on in the Senate later this summer or early fall.

Be afraid enough to BE LOUD in your advocacy against approving the AHCA in it’s current form and use your voice.

Don’t know how to contact your Senators to ask them NOT to vote in favor of AHCA – stay tuned later and I will share an easy way to find out who your Senators are and how you can contact them. I want to stress this is not a red or blue issue. It is not anti-Trump or Pro-democrat – It is pro-humanity and caring for all the people of our great nation. Your advocacy against the AHCA is not a political endorsement for either party. It is an endorsement for compassion.

Crap – I digress.

COBRA is expensive – we have had to use COBRA twice in our 20 years of marriage. Each time COBRA premiums have been a minimum of $1500 a month and that isn’t including all the normal prescriptions and doctor co-pays.

Imagine paying $1500 a month with no income. How many working families do you know who could dish up $1500 a month for insurance with no income? How many families do you know who have a 3-6 month safety net in the bank, meaning they have enough cash to pay their mortgage, car payments, insurance premiums, food, and other debts?

Without insurance the cost of managing a chronic illness for a month can be close to the same as the insurance premiums would be, or more.

With the current AHCA that passed the House people with pre-existing conditions can be denied coverage (the bill allows states to request a waiver that would allow them to set their own pre-existing rules) if there is a lapse in coverage (see getting laid off and not being able to afford COBRA). The bill also requires those with a pre-existing condition, as well as other groups, to pay higher premiums. ^^^This is obviously a very watered down synopsis of the AHCA that will affect people with pre-existing and doesn’t even discuss how it reduces and/or eliminates other protections for those most often marginalized, including women and reproduction services such as maternity care and birth control. (fun fact – erectile dysfunction is not listed as a pre-existing condition – go figure.)

This post is already wordy and maybe even a tad preachy so I will stop here and hope that you will contact your senators and share your concern regarding the AHCA. I know the Affordable Care Act (Obama Care) hasn’t been without issues and we as a nation do need to improve how we protect the most vulnerable of our nation, improve access to affordable care for all people, and hold big pharma accountable when they increase costs of medications that are not optional. (The cost of insulin is a post for another day.)

Here is a link you can use to find out who your senators are: Find Your Senator

You can also send a text  RESIST to 50409 – and follow the instructions on the text you receive back. (Yes I know it says ‘resist’ and for some that may appear to be partisan – ok – it has become a partisan word used by the left in regards to the current administration BUT please note that diabetes and other chronic disease do not care if you are red or blue. Chronic disease does not discriminate based on political ideologies. Texting the number above and asking your senators to vote NO on the AHCA in its current form does not brand you left or right. When you email, call, or text your senators share your story. Ask them to protect your health care and the health care of those you love by writing a health care bill that protects those with pre-existing conditions and those most vulnerable such as the young and old.

Ps. It is Friday. I started this post on Wednesday, already a day behind then. Now I am four days behind. The good news is am feeling better and I have the morning before work to try to catch up and read all the posts I’ve avoided because I don’t like to risk being influenced by others thoughts before I write my own post.

I did have a fun afternoon with my kinder class yesterday creating a kinder version of Edvard Munch’s The Scream. We had spent the week learning about the systems of the human body, sans reproductive system because they are kinders. Their favorite topic to discuss each day as we reviewed what we had learned the day before, was the brain and how basically the brain does all the heavy lifting including sorting out how information that comes into the body is processed and how the brain controls, and is affected by emotions.

How discussing national health care policy likely makes us all feel.

 

 

Expect The Unexpected

That title is an over used quote and cliché.

I’m sick so hopefully you’ll give me a little leeway because creativity is not on the table this morning.

Seriously the mother of all colds hit me hard Saturday morning and hasn’t let up.

Today is Day 1 of diabetes blog week.

Diabetes blog week is a week-long blogging event with daily prompts to get folks sharing their thoughts on a particular issue or experience. For many diabetes blog week is a set of jumper cables on blogs (bloggers) who have taken a much longer than intended hiatus from blogging. Or maybe that’s just me.

Today’s prompt copied from the Diabetes Blog Week FB page:

It’s Day 1 of Diabetes Blog Week!! Today we’re talking about Diabetes and The Unexpected.
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?

The obvious answer is to always be prepared with extra supplies, extra meter in the car, extra carbs to treat lows, extra infusion sets in case one fails while out or gets ripped off on asshole doorknobs, and extra insulin if a traveling – like I mean 2x what one might expect to use because tile floors at condos near the beach are not forgiving to glass bottles that roll to the floor.

That’s the nuts and bolts of being prepared for the unexpected in regards to supplies, but I think there is a mental preparedness that needs to be addressed.

Diabetes is an asshat and even when one is doing everything “right” (checking blood sugars, bolusing for food, eating healthy, and exercising) blood sugars can spontaneously misbehave because Venus is in retrograde and a butterfly fluttered his damn wings in Uganda. These spontaneous highs and lows in blood sugars and the relentless care needed to stay alive and healthy can take a mental toll on a pwd. (A quick side note in case you are new to my blog. I have a fully functioning pancreas. My brain, not always so. I am a mom of 3 teens with T1D so the thoughts and experiences I share come from a place of observation and discussion regarding my kids and 10 years of living with others who live with diabetes.)

Everything in one’s life could be ideal (aside from having an organ that doesn’t do what its supposed to do) but one may still find that anxiety, frustrations, and depression can sneak in a sucker punch. Those are the days that it is harder to be prepared for.

If you are reading this you are likely already connected to the Diabetes Online community and you recognize the value of a community of people who understand ‘me too’. Even being connected some of us (caregivers of pwd/cwd included) can be too proud or too stoic to admit that we are struggling. There can be a fear of a stigma in admitting we are depressed, overwhelmed, or anxious.

I feel like the copious amounts of cold medication has caused me to wander from the topic. Stay with me.

When my youngest was diagnosed in 2007 I was not using any social media. I was not really connected to anyone else who had children with diabetes. I mostly ran into others who had an aunt or grandparent that lost a leg or died because of diabetes. Those who share stories like that don’t mean to scare us, they are simply trying to empathize but don’t know how. I spent two years without any real support or connections, although once each of those years I attended the Children With Diabetes Friends For Life conference in Orlando. An amazing experience, but still only once a year. Then my daughter was diagnosed and both kids attended diabetes camp. That allowed me to meet some local families and have some support. Still I spent another 3 years alone and afraid to admit that I was struggling physically and mentally while caring for my kids. In 2012 I found the Diabetes Online Community. That was a turning point for me. I found others who truly understood what it is to be a parent of a cwd but even better I found pwd who gave me a glimpse into what it was like to live with diabetes so I could be a better parent to my cwd.

Instead of just giving me kudos and calling me a super mom, people online gave me permission to be frustrated and sad. That was unexpected. It is great to be told what a wonderful mom I was, but it was better to be told I didn’t need to be perfect. It was great to be told how brave and strong my kids were, but it was better to be told that they were going to struggle and that it was ok.

I seriously have a foggy brain with this cold but I hope I’ve shared my thoughts in a somewhat cohesive manner.

  • Have extra supplies because you never know when your friends dog will jump on you and rip your site off.
  • Recognize that even when everything is coming up roses, anxiety and/or depression can take you for a ride, asking for help or simply sharing in the DOC is encouraged because their is no greater power than “me too’.

I’d give my life if it meant my kids didn’t have diabetes. Since that isn’t an option I have to recognize what diabetes has brought into our lives even if it means taking the good with the bad.

  • Friendship
  • Resilience
  • Strength
  • Empathy
  • Compassion
  • Courage