When a Decision Can Cost a Life

Diabetes is one disease that making the wrong decision could end up costing someone their life. Those with Type 1 diabetes rely on insulin to remain alive and healthy every single day. This insulin can be given through multiple daily injections or an insulin pump. All of which also require the proper supplies to administer. They require constant monitoring and checking of their blood sugar levels.

What happens when access to these supplies is denied? What happens when a decision by one party affects the lives of young children they don't even know?

Let's face it when access to these supplies are denied, this can be fatal!

Why am I writing about this? Because this is the very circumstances our family is facing. I haven't talked much about what is going on behind the scenes in the Montgomery household other than to close friends and family members, but when my children's lives are hanging in the balance, I will put all pride aside and ask for help.

In August of 2016, my husband, who is a corrections officer at a state prison was assaulted by an inmate. This resulted in a sprained finger and a TBI (Traumatic Brain Injury) which has required consistent medical attention by many, many doctors and specialists.

Because of this assault, he has been unable to work while he heals and recovers. Unfortunately, a decision was made to deny his claim for workmen's compensation. While the process of an appeal was occurring, my husband used his leave from work to cover the time he was off, so that he would still receive his income and of course be able to pay for our health insurance premium since it comes out of his employment.

Of course, it's now January, and we thought by this time he'd of had a decision in the matter of his workmen's compensation appeal and he would continue to be paid. HOWEVER, that is not the case, he ran out of leave, which means he is no longer receiving any pay.  This also means we are on the verge of very soon of losing our health insurance.

What does this mean for us? This means that access to the life-saving medical treatments and supplies for 2 of our children with Type 1 diabetes may be denied.

So where does this leave us? It leaves us without an income from my husband who is the main income earner in the household. It leaves us having to go through the process of applying for assistance for food and medical, which still has yet to be approved. It leaves us with the possibility of having NO coverage for life-saving medicine and treatments. It leaves us struggling to keep the electricity on, to keep our house warm, to keep a roof over our heads.

We're not new to struggle and we know that with this struggle we will overcome so many things. But when your children's life is in the balance, what is a mom to do?

I mentioned about needing help. I need help making my voice heard, I need help speaking for our family to let our representatives know what is happening and how the lives of children are at stake because of a 'decision' of one party to deny something that happened in their very institution by one of their inmates. My husband didn't ask to be assaulted, he went to work that morning hoping to have an uneventful workday and come home safe to his family. Instead, however, he had to endure an assault at the hands of a criminal, who already has hurt other officers before. Please see here: http://www.statecollege.com/news/local-news/inmate-sentenced-for-spitting-on-corrections-officer,1470601/ The August 10th incident is in reference to my husband.

That is where I need your help. I ask, beg, each and every one of you reading this to help  me by contacting my representatives. Make the voice of our family heard, shout it to the mountain tops and help me keep my children alive!

Maggie age 6

Clifford Age 13

Representative Glenn GT Thompson

3555 Benner Pike ,Suite 101 

Bellefonte, PA 16823

Phone 814-353-0215

Representative Bill Shuster

310 Penn St #200

Hollidaysburg, PA 16648

814-696-6318

The Death of a Pancreas

We are only 18 months into my daughter, Maggie’s Type 1 diabetes Diagnosis. At this point in my son Clifford's diagnosis, I remember being angry and confused. I really did not understand the full picture of what had come into our lives. This time around however, I'm in a much better place. I am no longer harboring feelings of anger, and there is no confusion. Instead, I understand what we're dealing with, and what is to come.

If I had to describe where I am exactly, I'm getting over a bad break up, before the breakup officially happens. Her pancreas hasn't quite kicked us to the curb, it hasn't put all pancreatic responsibilities on me just yet, it's still working, reluctantly, still fighting against the attack from her body. There are signs it's giving me from time to time that we will eventually 'break up' officially, those rare 200 numbers are when it lets me know it's getting tired.  But for now, I at least got the opportunity to grieve before we've officially said goodbye to her functioning organ. 

It reminds me in a way of when my Grandma first told me she was diagnosed with cancer. I didn't know how long we had together, I knew she told me she was a fighter and would do everything she possibly could to kick its butt, and I believed her. She was a strong Irish woman, stubborn and tough, and if anyone could do it, she could. Someone reading this that might not understand Type 1 diabetes, may ask, "Are you really comparing her pancreas to your grandmother"?  Yes, Yes I am. If I could go in and rescue my little girl’s organ from this attack, knowing full well it would literally save her life, give her a life free of multiple injections, 10-15 finger pricks daily, and constant worry and fear that she may drop low and we may not catch it, you better believe I'd do that in a heartbeat. Just like when my grandma told me, I wished so hard there was something I could do to take this cancer away from her, to kick it out of her body. 

Until you've lived this life, and have a child who has to live with a chronic illness that has no consistency, doesn't sleep, and never needs a break like we all do, you won't truly understand the connection between the two.  So like the moment I will never forget, when Grandma called me, Maggie's pancreas is letting me down easy, much easier than her brother's did thank goodness. I do not know when it's officially going to kick the bucket, that is an another blog post for another time, processing those feelings of 'not knowing'. But for now, we can enjoy our time together while we still have it. Enjoy that she can sit down to eat without an additional injection for now. I'm doing my best to soak in all these precious moments before we have to say good bye to this organ that many may not realize just how vital it is. Yes, you can live without it working, millions do daily with Type 1, but insulin injections, and an insulin pump are not a cure, they are just life support to keep these awesome people alive daily. But honestly, they are no substitute when compared to fully functioning pancreas.

If you are reading this and you are new to the Diabetes community, I encourage you to Check out Trial Net. Get others in your life affected with Diabetes tested for antibodies that are seen in type 1 diabetes. It could very well save their life. No matter how prepared we believe we are, how much we convince ourselves we'll recognize the symptoms in other children of ours, we also get busy living life, and tend to overlook things. If you could have a heads up that it might happen, isn't that priceless?

It has definitely been a lifesaver in our household with Maggie.

Back to School with Diabetes

It's almost that time of year again. The kiddos are getting ready to head back to school and start a new year. It's always a busy time with two kids Type 1 diabetes. There are supplies to be gathered, bags to be put together, documents to be prepared and meetings to schedule.

With so much on your plate as a parent of a child(ren) with Type 1 you may be overwhelmed with where to start. But I want to let you know you are not alone. In fact, the website I'm working for has put together a great article on everything you need to know to get ready for school this year.

If you are newly diagnosed this is a great starting point. Please check it out here at The Diabetes Council and let me know what you think. If we forgot anything, let me know.

CDE Interview with Janet Howard-Ducsay

I'm very much enjoying my new position with The Diabetes Council. In case you haven't had the chance to check it out, I recommend you take a look over there. It's a new site, and we're getting more information up frequently, but there is still a TON of great stuff.

I conducted my 2nd CDE interview recently with Janet Howard- Ducsay from Redlands Community Hospital. The CDE's I've known since my kids have been diagnosed have always been hard-working and patient dedicated. You can tell that each and every CDE I talk to always wants the best for their patients, and it shows here with Janice. Take a look over our interview and share with friends and family that may be interested in a Diabetes perspective from a CDE's point of view.

http://www.thediabetescouncil.com/cde-interview-janet-howard-ducsay/

Growing Up with Diabetes

What's the saying they always say, "Kids grow up so fast"? Boy, is that true, but you know what? Kids with Diabetes grow up even faster! Like light speed faster. I mean it was only yesterday that my little girl was learning to walk and talk. After her diabetes diagnosis, she was ready to take on the world, always wanting to learn more, do more and manage more. And here's the kicker, she's only 5 years old.

So as I'm working earlier today, Hayleigh was helping me get lunch ready. I hear a clicking sound and look over and what do I see?

I ask "What are you doing Mags?" and she responds nonchalantly with, "Oh, nothing, just testing myself for lunch".... 

Wait a second, when did I blink and this tiny little lady become independent and wanting to test herself, at 5! 

SO yes folks, kids with Diabetes do grow up even faster! We joked last week when she asked about testing herself and she asked when her brother first tested himself, well, I told her "He was 7"... She grinned and was like "Okay then".... I guess this is what set this in motion, it's always a competition, however, little did she know he didn't get diagnosed until he was 6, so she had him beat there by 2 years, but that's something' we'll keep as our little secret, since she thinks she's winning.

New Position- CDE Interviews

Well, it's been a little while since I last posted, almost a year in fact. It's been a busy year for sure. I've recently accepted a new position that I'm loving. I'm in charge of reaching out and getting in touch with CDE's (Certified Diabetes Educators) across the country and asking them about their roles in the lives of those with Diabetes (All types). 

My first interview is up! I had the pleasure of talking with Janice Baker, B.Sc., M.B.A, R.D., CDE, CNSC, of Arch Health Partners, in California. Janice is a really sweet lady dedicated to making the lives of those living with Diabetes much more manageable and fulfilling. Take a read through our interview and share with your friends and family. If anyone is in the area where Janice and her partners work, I'd recommend checking them out. 

Check out our interview here---->http://www.thediabetescouncil.com/cde-interview-janice-baker/

The Frustration of Getting Diabetes Supplies

You need to test your blood sugar daily, up to 15 times a day with Type 1 diabetes. In order to do this you need to have the test strips, and lancets to do so right? Unfortunately, for many with diabetes of all types it isn't as easy as it sounds. Instead, you spend over a month back and forth between a mail order diabetes supply company, and your insurance. I've battled before to get the supplies my son needed, but this time it was for my 4-year-old daughter, newly diagnosed in March. And this time it wasn't the insurance who was causing the holdup, instead is was the mail order company, who was not doing their job properly. I'd advise you if you are looking for a new D supplier, or are looking to sign up with one for the first time to stay away from EdgePark Medical.

For over a month I have talked to numerous representatives, many of who were quite rude with me and refused to listen to what I was saying. To say their customer service is horrible is an understatement. Our insurance said, they will cover 100% under the DME coverage for whatever her doctor prescribed. So I double checked with EdgePark, her doctor prescribed 27 boxes of (50 strips) and 14 boxes of (100) lancets for a 3-month period. Should be a piece of cake to get these sent right? WRONG!

Instead, they try to bill me for almost $800 for her first order, and insist that they can only send 6 boxes of strips (300 strips), and 3 boxes of lancets (300 lancets) for a 3 month period. That doesn't add up if you do the math at 15x testing a day right? After over a month and a half, our insurance calls and let's them know they are to submit documentation (prescription) with the claim when they put it through, otherwise without documentation from the doctor she is to test this many times a day,  guess what, it's going to get denied, which is what they did time after time after time, for over 1 month. No matter how much I told them they need to talk to the insurance, they stated no they didn't, in fact, they only needed to submit the claim and can't help if it's denied. But apparently, from the beginning if they were doing their job correctly, it would have gone through. No matter how much I told them that my 4-year-old was running dangerously low on her supplies, they could care less.

When I expressed to them I would have NO WAY of testing her blood sugar soon when we run out, short of pricking her finger and tasting her blood to see if it's sweet, they could care less. In my experience when it comes to EdgePark Medical Supplies, patient, and customer care is not of their upmost priority. Instead, they argue with the patient, or caregiver, insist they are doing everything they can to get their supplies to them when they are not, and get downright rude.

So now, I have a choice to make, to stick with a company that has treated us horribly, and lacked empathy to understand our situation, and the competence to realize it has been their fault all along. If they would have listened to me initially and contacted our insurance, this would have been fixed, well before she was dangerously low. Or I can change and go with one of the other 4 our insurance has suggested. The question is, what is EdgePark going to do to rectify the situation. Not once throughout the entire process have I heard an apology of any sorts, only from our insurance, who was not at fault. I guess for the brief time being, while I look around at the others, the ball is in EdgePark's court.