I may not look sick, but …

by Elizabeth Snouffer on 11/12/2013

How in the world does it makes sense that I need all this equipment to manage what many medical professionals consider a “manageable condition” called type 1 diabetes? This is ONE day of all the tools I require for insulin pump therapy – including back up syringes. This photo represents the fact that something is wrong with diabetes care in the 21st century and is the biggest joke in medicine today.

There is not one new pump, device, bell-ringer or gizmo that makes up for the fact that insulin therapy is the toughest, most difficult therapy to administer and failure of the therapy is accepted everyday. People who are connected to the business of diabetes don’t like to talk about this aspect of care because of liability. Hence, they are never wrong! Patients or people living with diabetes are told they are wrong or in error or forgetful (you get the blame game), and to make matters worse researchers are paid to prove that very fact! See list of research to investigate and provide evidence for connection between insulin therapy and patient error in photo below.

I may not look sick, but here is what I felt like when this photo was taken:

- I was undergoing the “waiting to eat syndrome” with a BG of 300 mg/dl plus
- Eyesight temporarily “off” because of fluctuations in BGs, burning eyes (not good for editing)
- Nausea, and headaches, irritability
- Lack of concentration, and poor focus, definitely reduced mental stamina

Does your medical team tell you that you are in control? My symptoms are rarely in my control. Do doctors tell cancer patients they are in control of chemotherapy? No, they don’t. Well, I don’t know why doctors feel that patients are always in control of insulin therapy. I also don’t get it when someone writes in a comment on diabetes 24-7 that type 1 diabetes comes down to discipline and just “inject and eat” “so easy” and “diabetes is great” or “it’s actually made me a better person.” That last comment occurs frequently and all I can think to say is, “what crimes had you been committing before?”

So to clear up some of the myths about type 1 diabetes and how manageable it is today, I thought I would interpret some of the key messages delivered by the medical community to patients.

What the doctors say:

Tight control is hard and comes with great risks, but it is the only way to avoid complications

What they don’t say:

• Tight control leads to moderate hypoglycemia, which leads to more hypos. Increased number of hypos lead directly to acute adverse events, including major seizures, brain damage and finally brain death.

What they mean:

• There is no cure for your condition. Good luck.

What the doctors say:

Insulin pump therapy is the easiest way to achieve tight control

What they don’t say:

• Not everyone (including professionals just like me) truly know how to use insulin pump therapy or individualize it for you, ie dosing; trouble-shooting helps although modeling is based on height, weight and trends; hormones are only considered after the fact; pump therapy risks usually target patient error which is absolutely ludicrous (who out here has had at least 5 types of tech failure in the past 10 years (including car systems, computers, televisions, mobile phones); safety studies are becoming few and far between and medicating or treating hypos adequately, requires research, and CGMs are there to prevent hypos and early death not just to see patient ”trends.”

What they mean:

• Multiple injection therapy has greater risks so if you can pay for the pump – do it and if you get in trouble – call the manufacturer

What doctors say:

Hypoglycemia is dangerous. Watch for symptoms. Treat it immediately and be careful, but don’t exist with “highs” because of fear. (How’s that for mixed messaging?)

What they don’t say:

• Hypoglycemia compromises physiological and behavioral defenses against subsequent falling plasma glucose concentrations and this causes a vicious cycle of recurrent hypoglycemia. Improvements in glycemic control are being made, but the problem of hypoglycemia has not been solved. Furthermore, for type 1 diabetes, circulating insulin levels do not decrease as plasma glucose levels decline. And in the absence of a b–cell signal, the a-cell glucagon response to hypoglycemia is also lost. Without insulin and glucagon defenses, persons with T1DM are critically dependent on epinephrine secretion which is also weakened. Carbohydrates are the only solution, and sometimes that fails.1

What they mean:

• Hypoglycemia is unmanageable for T1s and can lead to functional brain failure

What doctors say:

One day, you’ll have a cure.

What they mean:

• I feel terrible about having to treat you with insulin, but it is all I have.

Insulin is all we have. Remember that fact when someone tells you the cure for type 1 diabetes is not needed. Remember that when insulin therapy is the basis of new technology being sold to you. People living with type 1 diabetes have insulin as a band-aid to get through for now, but a cure is desperately needed. And if you STILL question the validity of this statement, think about being a person with type 1 diabetes in Leyte, Philliphines today and then tell me if you still believe insulin is enough.

Be safe.

Reference:
1. Cryer PE, Axelrod L, Grossman AB, et al. Evaluation and Management of Adult Hypoglycemic Disorders: An Endocrine Society Clinical Practice Guideline. Journal of Clinical Endocrinology & Metabolism, March 2009, 94(3): 709-728.

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{ 5 comments… read them below or add one }

Todd Norden November 12, 2013 at 10:39

Thank you.

Debbie November 12, 2013 at 10:46

I’m going to read this every day to remind myself that every high bs I get is NOT my fault. Thank you!

Tammy Seidick November 12, 2013 at 11:23

Hollaaaa!!!! What a great post!

Elizabeth Snouffer November 12, 2013 at 20:42

This is how most of us live. We negotiate states of wellness to live a functional life. “I will give this presentation and stay in my business meeting for the next 5 hours but manage BGs above 200 so I don’t hypo and panic. It will be uncomfortable and my performance (thinking) will be not be as strong but it may be safer.” We even teach children to behave this way. As an advocate I tell people to be strong and not fearful of what society might think. “Go on! Reach inside your bag for candy as you tremble and shake and make no sense in what you say. Fill your mouth with a thousand skittles in front of your colleagues and explain you occasionally suffer from this silliness.” “I am a type 1 diabetic – it’s nothin. Don’t worry and sorry for the inconvenience!’” But I now see how this excuses care and the disease itself. Diabetes medical care is STILL sub-optimal. Diabetes is serious. The burden on patients is getting worse, and medical professionals and pharma/device business executives take absolutely no responsibility unless they are sued. It is incredibly unethical and absolutely disgusting. And what motivates me most, aside from personal distress, are all the children/young adults today who are told to be as normal as possible. “You can do this!” What? What’s worse are all the children (and adults) who are given no assistance and have limited access to insulin. A chance for a healthy life is a right – indeed!

Jamie Perez November 13, 2013 at 20:00

Elizabeth, I could not agree more. Its time we all told the world like it really is! Sure a T1 can do and be anything anyone else can do and be- there are lots of inspirational T1 role models out there proving that everyday; but pretending it is easy is doing nothing but a disservice to all the adults and children living with this awful disease. The world needs to know the amount of 24/7 work that goes into looking “normal” and they need to know the risks that all T1′s live with on a daily basis. It’s time to stop sugar-coating T1D! Thank you for writing this!

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