dBlog Week day 2: We the Undersigned

Click for the We, The Undersigned – Tuesday 5/14 Link List
Recently various petitions have been circulating the Diabetes Online Community, so todaylet’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley of inDpendence for this topic suggestion.)

We, the Undersigned, would like for health insurance companies to cover reasonable amounts of the necessary diabetes supplies required to sustain our lives. Even though you don’t understand why we must go through 6 test strips to test blood glucose levels some days and more than 12 the next day, neither do we. It is called the fickle nature of diabetes. And while we are at it, please cover the continuous glucose monitoring sensors without charging exorbitant out of pocket fees to receive these supplies. Some of us are on fixed incomes, and cannot afford to pay $3,000+ per box of glucose sensors each month. These are not just luxury items, either. Sure, it is pretty cool technology and all to be able to have a device measure the general relative glucose level and show you trends, but that doesn’t eliminate blood sugar testing, and the whole reason that most of us who use these nifty continuous glucose monitoring devices in the first place? Oh yeah, it is because we can no longer sense whether our blood glucose levels are within safe ranges. I myself, while going through approval verification, did not feel a low blood glucose level until my meter literally registered “LO” and trust me, that’s not pretty! It is much safer, and much better if you pay for and approve these devices, because preventing just one emergency use of glucagon and the related emergency room and hospital costs associated will be much higher. Is that what you really want? Really? If you really want to keep us as healthy as possible, and keep us from having as little long term damage as possible, paying for technology like insulin pumps and continuous glucose monitoring devices will prevent hypoglycemic episodes, retinopathy, amputation, neuropathy, nephropathy, and more. You may have to pay more now, but you will save money in the long term when you don’t have to pay for dialysis later. Or, worse, when the kidney damage is so bad that we need to be listed for a kidney transplant. It happens. So please, look at the long term costs, not just the money that you are paying right now. Look at the long term health costs and the long term health benefits that we will gain from this technology. Sure, you may pay more right now, but look at how much you will save when you have healthier, more productive members of society in five, ten, or even fifteen years down the line.

Sincerely,

Aliza, a person with diabetes, type, quite complicated

dBlog week: day 1! Share and don’t share

Click for the Share and Don’t Share – Monday 5/13 Link List.
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

For those of you who follow my blog, or who have even read a little bit of my blog, you’ve probably figured out that I’m not your typical open and shut case. Actually, there is nothing “typical” or “textbook” about me or any of my healthcare concerns. While I am seen at a teaching hospital, I am very used to seeing multiple care providers at each appointment, generally beginning with a medical student, a rotating resident, sometimes a fellow, and then, finally, my attending doctor. Fortunately, I’m at a point in my “medical history” where all of my physicians have been hand picked by my primary care doctor or other members of my team, specifically for the expertise that they have in abnormal cases like my own. I give my team a whole lot of credit. Actually, to put it in non-technical terms, my team is pretty freaking amazing! They give me the time, attention, and dedication to listen to my concerns, see the issues that may, and usually do not fit inside the neat little box (but when does diabetes ever play nice, and fit inside of the stereotypical box?!?), and work to appeal insurance rules that say that because I’m not a textbook “type 1 diabetic” I’m not eligible to remain on my current therapy of an insulin pump.

I’m lucky, because my team of CDEs live with type 1 diabetes themselves, and know what living with the ups and downs of diabetes is like. They know that sometimes, no matter what we do and no matter how hard we try, BG numbers are going to be wonky, and it will have nothing to do with what I did to manage my diabetes, or more, what I didn’t do. I consider myself to have the dream team when it comes to endocrinology providers, because when I ask about pump questions, chances are, my CDE will pull out her pump or CGM and show me how she’s doing things right now, not look down at me like I should have been able to do better. There is no judgement, and I feel so comfortable discussing what is and what is not working with my team. This hasn’t always been the case, but I feel so incredibly fortunate to have the team that I have now. They are truly amazing, and it makes living with a condition that must constantly be managed just a little bit easier.

~ Aliza Chana

Long time, no post!

It’s been way too long since my last blog post, but I haven’t forgotten about the amazing DOC, and my dBlog! I’ve been super busy with school. As most of you know, I’m in the Health Coach Training Program at the Institute for Integrative Nutrition this year, and I’ve just reached the half-way point! In fact, I received my mid-point certification, which officially allows me to begin to work with clients professionally! I’m very excited, and have lots of hope about what I will be able to do with this, and where this will lead me. I’m hoping to be able to make a real difference in the lives of people living with diabetes of all types, after living with d myself for over 10 years now and going through a misdiagnosis, MDI, and a few pumps and CGM.

I have learned so much through school at IIN, and know that I will learn so much more before I graduate next May. I am so excited about the knowledge that I’m gaining, and I feel empowered to do so many things. I have so many ideas, so many things that I want to do with this degree to be able to help others. I hope to be able to write more about my programs in detail in the coming weeks. For now, I want to invite you all to visit my health coaching website. If you are interested, I offer a free 50-minute consultation so that we can discuss your goals and how I can help you to achieve your goals. You can email me if you are interested in scheduling a consultation. If you are not local to the Chapel Hill/Durham, NC area, I offer sessions via Skype, FaceTime, Google chat, and phone.

In Diabetes land, I have been doing really well. My BG levels have been mostly cooperative, B”H, and I am rapidly approaching my 11th diaversary. World Diabetes Day, 11-11-12, will mark 11 years of mostly complication-free living with diabetes. Yes, I have neuropathy, but that is more attributed to a thiamine deficiency, and I have visual impairments, related to my pseudotumor cerebri. I can no longer detect a low BG until I’m dangerously low, but I’m thankful for diabetes technology, and my CGM. I’m also very thankful for my insulin pump, which allowed me to gain better control, and get away from multiple, multiple daily injections to maintain some semblance of control. I will write more about my diaversary later.

For now, that is all. I will try to update more frequently. School has kept me from my blog, and things that I love in the DOC, like DSMA, and frequent tweets and Facebook posts, but I will be back soon!

DHugs,
Aliza Chana

It’s back to school season!

Back to school season for a PWD (person with diabetes), CWD (child with diabetes), or parents and loved ones of PWD and CWD can be a stressful time! I was diagnosed in November of my sophomore year in high school and it was a stressful time. At first, I was misdiagnosed as a type2, placed only on sliding scale Humalog, which I was requiring a couple of times a day,  and doing injections in the nurse’s office. Then, we figured out that I required basal insulin, added NPH, Humalog was switched to R, and eventually, I carried my own insulin. I finally begged for a pump about six months after diagnosis, because high school schedules are so incredibly unpredictable. Taking AP Environmental Science first period alone was enough to throw my whole day off! An unexpected “lab” outing to the lake behind school meant a trek through the woods, collecting data around the lake, and walking back to the building … and still required me to have a stable enough blood glucose level to make it through periods 2, 3, and 4 before lunch (!!), while sometimes walking clear across the school! Insane, right?!? Especially if I didn’t know and had a full breakfast bolus on board? Yeah. A lot of learning took place rather quickly. I thankfully never had to use glucagon, and I only had one low severe enough to have to leave school. That one was scary. My BG wouldn’t budge, even after juice, countless glucose tablets, and I don’t even remember what else. All I remember was that I ended up in the endo’s office. Thankfully, my glucose did start to rise, and all was ok. I am thankful for the guidelines in place that allow all CWDs to carry the supplies that are required to care for themselves here in NC. The American Diabetes Association and JDRF both have wonderful resources to help with back to school planning.

Think for the unexpected. It isn’t fun or something that you want to think about, but the alternative is having a situation where you or your child is in a situation where those around them are not prepared to help in case of emergencies. We all hope and pray that those situations never happen, but it is always better to be over-prepared than not prepared at all. Some things to think about:

• When BGs need to be checked — scheduled and unscheduled
• Even if you/your child self manage/self-check BGs, instructions, both written and graphic/illustrations/pictures, on how to use the glucometer — including information on how to code the meter for a new vial of test strips if necessary, how to use control solution, how to change the meter battery, and anything else that might be required to test in case you are unable to test due to illness, injury, severe hyper/hypoglycemia.
• When insulin needs to be administered and how —  via injection, via pump — and how insulin is dosed (basal, carb counts, ICR); a list of basal, common carb counts, and ICRs
• If on oral medications, what the medications are, when taken, and how
• What to do for hyperglycemia (high blood glucose); list step-by-step; include your phone numbers, emergency contact information, endocrinology office number
• What to do for hypoglycemia (low blood glucose); list step-by-step; include your phone numbers, emergency contact information, endocrinology office number
• What to do before meals and snacks; include ICRs – insulin to carb ratios, and how to count carbohydrates (perhaps send along prepacked meals with counted carbs; send in CalorieKing book for a carbohydrate count “database” for the school to use for treats, get nutritional information ahead of time for any school lunches that you can)
• Use of cell phone written in to a 504 plan so that you/your child can communicate with a parent/guardian or endocrinologist/CDE if there is a problem or question about management
• How to administer glucagon, in case of emergency
• If you/your child has a CGM, how to calibrate, and how to read the readings, either on the pump screen, or on the receiver. Also, make sure that the school and teacher know about the CGM and alarms, that they are not from cell phones or games, and are from a life-saving medical device. I know that when I was in school, in a college course, I was tempted to turn my CGM alarm off for the hour that I was in lecture because I knew that it was annoying not just to me at times, but to those around me. DON’T DO IT! The alarm is there for a reason, and can prevent you/your child from experiencing a dangerous high/low blood glucose level, and teachers will understand that it is there to save a child’s life!
• Permission for you/your child to be able to eat/drink when necessary to treat a BG

Hopefully, I’ve remembered the important points! Please comment and add things that you have used while in school or with your CWD at school to help them be successful.

Wishing everyone a GREAT school year!!

dHugs,

Aliza Chana

Becoming “Whole”istic

Some of you know that I’m in school again. I’m fulfilling a dream, of sorts, and doing work that I believe is truly meaningful, important, and something that completes me. I’m attending the Institute for Integrative Nutrition’s Health Coach Training Program (HCTP) to become a Holistic Health Coach. I love my work, love what I’m learning, and I’m excited and nervous at the same time about working to help others work to make positive changes in their lives. This is very meaningful work, and so important and needed in our current world. Not so surprisingly, I want to take my life experience, and use it together with the HCTP to work with people with diabetes and other chronic health challenges to help them, along with their team approach (I am NOT a replacement for other health and medical advice!), help people to reach healthy goals. These goals include healthy eating, exercise, relaxation, and general well-being. I have a website set up for my coaching, http://www.healthinmymind.com . I am hoping to continue to make some changes over the coming weeks, and I will be offering more and more of my program in the coming weeks as well. I’m excited!

This has helped to give me the drive to get back to the gym myself and work with a personal trainer a couple of times a week. I am also trying various techniques for relaxation — my personal medication list has been cut in half, and while hard at first, it is incredible to not take any medications for pain for the first time in many years! Certainly a lot of work, but an amazing feeling, and so inspiring to know that I have the capability to move forward!

I will post more later, but haven’t posted in a while, mostly due to my surgery, so wanted to put up a quick post to let you all know what I’ve been up to lately!

dHugs!

Aliza Chana

Help me get to Mayo’s Social Media Summit!

I’ve applied for the Mayo Clinic’s Social Media Summit scholarship. I need your help! The  finalists are determined by the essays that receive the most Facebook “likes”, tweets, and comments… essentially three ways to vote to help me represent the voice of the dCommunity, and learn to be a stronger advocate, with stronger social media skills!

Please read my essay on the site. I found out about this late in the game and I’m trying to catch up! Please vote, by liking on Facebook, tweeting, and leaving a comment on the Mayo blog. I appreciate all of the support! Please also share with your friends! Every little bit helps, and will contribute to shaping me as a stronger advocate.

http://socialmedia.mayoclinic.org/2012/07/31/aliza-cz-scholarship-contest-essay/

dHugs,

Aliza Chana

Diabetes Blog Week 2012: Day 1 – My Friend

It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends.  With that in mind, let’s kick off Diabetes Blog Week by making some new connections.  Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!!  Let’s all find a new friend today!    (Special thanks to Gina, everybody’s Diabetes BFF, for helping me title this post!) ~ Karen @ http://www.bittersweetdiabetes.com

The blog and person to whom I want to introduce everyone doesn’t write an ongoing blog, per say, but for anyone that has interacted with her or met her, you will understand, once you have become one of her friends, her amazing, fantastic caring nature is second to none. I am talking about Natalie._c-. She is amazingly active on the TuDiabetes site, and she has a small blog there which can be found at http://bit.ly/nataliecblog.

She and I have become great friends over the past year or so, and she has managed to find and follow me on every form of social media imaginable, to support me through the good times and the not so good times. This is one of the things that I absolutely love about her.

If you don’t yet already know Natalie, check her out! She’s easy to fine on TuD and a great friend to have in the DOC!

(dHugs)

~ Aliza Chana

Unstable ground, once again

I’ve missed you, diabetes family! I’ve been curled up in my bed for the better part of a month now, dealing with a headache so severe it is almost unimaginable.  See, I have this little known condition called pseudotumor cerebri, also called idiopathic intracranial hypertension.

“Pseudotumor cerebri literally means “false brain tumor” because it’s symptoms mimic those of brain tumors. It is also (more accurately) called Idiopathic Intracranial Hypertension (IIH). The term idiopathic is applied because it’s cause is not truly known. It is likely due to high pressure caused by the buildup or poor absorption of cerebrospinal fluid in the subarachnoid space surrounding the brain, but the reason for the buildup or poor absorption are also unknown.” (About.com Headache guide, Teri Robert)

I have been laying down, in a no-gravity tilt position to try to take the pressure off of my back and head. That is the only position in which I am even somewhat comfortable. So, in an hour or so, I will leave to go over to the hospital for pre-op, first with the neurosurgery team, then with the anesthesia team. My surgery is next Thursday, 5/17/12. I have to have my VP Shunt replaced. (What the heck is a VP shunt you say?!? check out this link!! http://neuroanimations.com/Hydrocephalus/Shunts/VP_Shunt.html)

I’ve had this surgery twice, but when I had it before, I was on my old regimen of a ton of pain medication, the regimen that I don’t want to get back to ever again on a day to day basis, and my body was “conditioned” in a way for having surgery. I was used to having surgeries and the hospital, even more so than now. I also was still getting tube feedings and hydration with vitamins and minerals through an IV during my first surgery. I know mentally that I will be fine without those things, but I also know that I am now a huge clot and bleeding risk, and that makes this all the more risky. That’s fine, because I know that I’m in the best hands possible, but the nerves are still there.

The biggest punch in the gut is that I not only didn’t get to have any choice in the date, but it is the same date that I am supposed to go to see Wicked with my sister and her boyfriend, and I’ve been asking for tickets to go every year that it has come to town, and I *finally* got them this year, and now I can’t go.  It also takes me out of the DiabetesSisters conference and orange:will walk, for which I have been training diligently for a couple of months, until I fell a couple of weeks ago.  I am still going to submit all of the virtual miles that I’ve tracked from training, and that I will track while recovering. That’s the best that I can do, and all I can really do.

I will try to keep you all posted between now and then.

(dHugs),

Aliza Chana

New product review!

I have a new page up for New product reviews! And today, my blog post is a new product review for the TelecareBGM! Visit the New product review page, and read the review of the TelecareBGM. The TelecareBGM is a new glucose meter with a built in T-Mobile 3G wireless signal and I think that it has a lot of positives. For the full review, read http://alizawithdiabetes.com/product-reviews/telecare/.

(dHugs),

Aliza Chana

Spring has Sprung!!

 Spring is moving in … coming in quickly here in Chapel Hill, and I’m doing lots of fun Spring activities to get ready for the fun, warm, spring weather! The picture above is of my blueberry bush! I have big plans for my spring garden! I hope to add a raspberry bush and a blackberry bush to the blueberry bush so that I have lots of fresh berries throughout the spring and summer! I also hope to plant some herbs in small raised box planters going down the front steps. We get full sunlight there during a good portion of the day, and I think that I should be able to tend to the garden there, plus the plants should get the sunlight that they need to stay healthy. I’m excited, plus, I’m growing things that I can use in some diabetes friendly recipes all spring and summer — that may be the best part. As an added benefit — I’ll be active while tending to the plants, which is always a plus!!

 This is a picture of Dot, my American pointer dog, and myself taken by my mom as we went for our first walk one evening to start preparing for the DiabetesSisters orange:will walk, in which I will be taking part on Sunday, 20 May. I’m raising money for the orange:will walk, and if you would like to support me in my efforts, you can do so here!

 An awesome, awesome picture that I took as we entered our cul-de-sac at the end of our first night of walking. You can see the moon, and Venus, if you look carefully!

 Robin and I chilling out on the front porch after a long day of shopping, appointments with my doctors, and walking around! Enjoying the spring weather, and enjoying the company of one another!

There have been some nice Spring days here, and I have been enjoying them, minus the explosion of green-yellow pollen dust coating on everything! That I could do without… but, even so, Spring days are here, and that means that summer days aren’t too far away! Enjoying these days of mild weather while they last, and enjoying the ability to exercise in this weather without too much rebellion from my body! My BG levels LOVE the added exercise, and I haven’t had too many stubborn lows, or highs either! Let’s just hope that things stay that way, and that I can keep enjoying the yummy weather, fruit and produce!

(dHugs),

Aliza Chana