Keep the dialog going

Scott Johnson is really getting serious. Check out his blog here. If you have comments, put them there or on mine. We need to know your thoughts, and hopefully in a positive way.

I agree with Scott, I do not want the perception of the Roche Social Media Summit as being nothing more than marketing or as one person said to me a public relations ploy. This does not appear to be the intention at this time. Are we right in being skeptical and being cautious? This appears to be a healthy attitude and I would not want to have it otherwise.

I also want to look at it another way, if Roche wants to bring the diabetes on line community (DOC) together with some of the leading diabetes groups and organizations for a face to face, this could be a giant leap forward in communications and exposure for both sides.

Looking on the positive side, we need all the help we can get to make these organizations recognize that we are writing about diabetes and looking for answers, places that the DOC can draw on for ideas and resources. We also need to communicate from our side the concerns and problems faced by the DOC and those of us living with diabetes. And this means those are lucky enough to attend and those not in attendance.

Could Roche interact more with us throughout the year? Definitely, and I think they are contemplating doing just that. Scott asks some very good questions at the end of his blog so I will quote them here:

- I am not exactly clear on what "Social Media" means. Is it possible that there is more to "Social Media" than blogging - which is where I come from? Who else needs to come to these things? Are we too heavy on bloggers, and not heavy enough on other "Social Media" channels? What are those other channels?
- I know nothing about how people get picked to be invited. I wish there was a little more transparency here. I think I have paid my dues in the Diabetes Online Community (and hope to continue doing so), but should that mean I'm automatically invited to stuff like this?

Please folks, let me know how you feel about this stuff. I need your input to help me know if I'm doing the right things or not. Unquote

I do know how I was invited – I was recommended by a prior year attendee. Have I paid my dues? Definitely not to the extent that Scott has. However, I do see an opportunity to assist others and help communicate their needs to people like Roche. I also see an obligation to Scott and others of the DOC to aid in make diabetes and the DOC a better place for all of us.

Even though I do not participate on Twitter and Facebook, I would consider them part of the “Social Media”

So both of us do want your thoughts, questions and opinions. Please!

Hospitalization concerns for persons with diabetes

This is a complex problem. Each state can have rules of conduct for the hospitals and even each hospital can have rules more stringent than the state's rules.

Many hospitals are very friendly for people with diabetes; however, unless you have time to talk to the administrator, and even then, never take anything for granted. I mean this, never take anything at face value. Check, recheck, and then check again. This will make sure the hospital knows that you are concerned and will need to be treated with respect. Some hospitals are also very unfriendly to people with diabetes.

I will emphasize this repeatedly because of the importance. A limited medical power of attorney is more important today with all the privacy rules and regulations in place. People that you want to be able to act on your behalf are often not able to because the hospital does not know them and without a limited medical power of attorney, it is useless to think that they will, even if it is your spouse. So if you are a person with diabetes, carefully consider the value of a limited medical power of attorney for your spouse and/or if you are single, a person or other family member you can implicitly trust.

In any hospital setting, make sure that if you are on an insulin pump that once the procedure is completed and you are recovering that you are allowed to regain control and use of it. But be prepared for those that will not allow you to have or use it.

A check list for hospital care:
1. Entering the hospital with prior knowledge and under doctor ordered request.

• First discuss the situation with your doctor so that together you can plan the course of action you can have control over. Parts of the plan may be out of your control. Your doctor can often make things go smoothly and you should give them a current list of medications.
• For what can be in your control, make sure the doctor can make the staff aware that you are a person with diabetes and request you be allowed to take your medications and do the testing.
• Depending on circumstances, try to be in charge of your own diabetes in the hospital as much as you are able.
• Again attempt to avoid having hospital nurses be the ones to check your numbers and decide how much insulin or medications you should take.
• When you enter the hospital, make sure you can take your supplies in a pouch or other secure container. Also take a notebook to keep all the details written down so that you are able to discuss these things with your doctor.
• If you are unable to do your own testing, secure permission to have a relative preform this.

2. Entering the hospital under emergency conditions.

• In this situation, you may have to rely on the hospital staff.
• Be prepared to communicate (if you are able) to the doctor on duty and/or ask for someone in administration to contact your doctor. Or if you have a travel partner, have them do this if you are unable.
• Do you have anyone that has a limited medical power of attorney that needs to be contacted. This is why you need this information in your wallet or purse.
• This is also when a medical alert tag is important.

3. Entering the hospital against your will or knowledge.

• This can be very confusing, because it can be an emergency or you are having a hypoglycemic episode and are arrested and taken to the hospital, and this can depend on many factors.
• You can only hope that you get the right treatment and this should is one reason to wear a medic-alert bracelet or necklace.
• Again, do you have a person with a limited medical power of attorney that needs to be contacted?

4. Entering the hospital in another community.

• Often this will be in an emergency situation and you may not have any control over your treatment.
• As soon as you are able, make sure you doctor is notified.
• The limited medical power of attorney thing again.

Procedures can vary with many hospitals. In some, it is highly advisable when possible to notify your doctor and make sure that he is involved as they will not or may not allow you to have your medications in your possession and may absolutely not allow you to medicate yourself.

This can be very important for people with diabetes and your doctor will have to clear this and even then sometimes your medications will still be taken away upon entry or at a shift change. So double check that it is made part of your records if possible before admission. If in emergency, then make sure your doctor is somehow notified.

Also make sure before hand (if possible) of the meals you will receive and be prepared to ask for exact carb count and still be prepared to not eat some foods that will send your blood glucose into the stratosphere. Many hospitals have not learned about high fructose corn syrup and low carb or may not even have a dietitian on staff that knows anything about diabetes. Do not rely on many hospitals having a knowledgeable CDE (certified diabetes educator) on staff.

If you are admitted to the hospital through the emergency room, then everything can go haywire and you may not even have your medications or diabetes supplies with you. This is why you should also keep a list of current medications in your wallet or purse. If possible and allowable, have someone bring your medications to you as soon as you can notify them, but they must know that they are not to surrender them. Better for them to return them to your home than lose them to the hospital. Your medications while in the hospital will cost quadruple or often more per pill than if you have them available to you from your supply. I repeat that some hospitals will not allow you to use your own medications or even medicate yourself.

Also as soon as you are able, let your doctor know so that he/she will be able to smooth the way for you to use your own medications. Depending on the hospital rules and some nurses, you may be forced to hide your medications as they will take them from you, not give you a receipt, and in some instances actually dispose of them.

I'm not saying this to take anything away from how well the nurses do their job, but they can be very busy and sometimes they forget to do things that are important, so keep this in mind.

The following are some links to add to what I have written and first one covers some tips that are also important.

• Article one
• Article two
• Article three

Limited medical power of attorney – disclosure statement. While this example is for the state of Texas, some of the principals apply to any medical power of attorney. Any medical power of attorney should be well spelled out and the necessary limits carefully spelled out. Just be careful of the attorneys that want to draw up a durable medical power of attorney.

While there are forms online that are state specific, I am not sure that some of the limited medical power of attorneys can be made to fit. One limit that should be spelled out is that when you are able to resume charge of your care, that the limited power of attorney is mute and not in force again until you again become unable to manage your health.

A Doctor's Perspective on Patients with Chronic Diseases

Once in a while this blogger gets hit with a good one. Do I believe this, YES, but if I hadn't read it with my own eyes, maybe not.  It is also not often that I have a blog that I can write that I do not have to do much research to write.

This is one of the best blogs by doctor about doctor – patient relationships written by a doctor that is not necessarily afraid to go the extra mile for his patients, especially those with chronic diseases, and diabetes is one of the mentioned diseases.

While I will need to reread it several times, he had me crying (a man crying? – yes with happiness!) and then he had me laughing. It is so unusal the to see a doctor say something that many of us patients with diabetes have believed for a long time. His words of caution are well placed and easy to see the reasoning behind them. Many of us patients are a little overly aggressive and as such can make a good doctor very nervous, especially if we are agressively proactive about our care, and not even mentioning patient's rights!

I was expecting to see one of the comments by Trisha Torrey from About dot com and was not disappointed. While she can be argumentative, she was almost, but not quite, tame in her comment. There are lots of comments and I will let you read them for yourself.

I would have made a comment to his blog, but I am hoping that I can reach just as many with this and encourage them to also read his blog – follow the link here. I think you will agree that when placing this doctor on my types of doctors in my blog here, that Dr Rob must be a definite Type six. While there are some things that are not said, for Doctor of Internal Medicine I am not normally that much into giving praise, but an exception is demanded this time.

What would or should one do?

This question came up recently about a product that has been written about by another blogger. Don't get me wrong, the blogger did an excellent piece about this product and has great interest in it.  I have been in email contact with the company and I like the idea and the high potential usefulness of the product, but doubt I will ever need it, but who knows.

The product is about 30 months, give or take a few months, from FDA approval. So here is the question.  Do I write about it or wait until it comes on the market?  I am looking for responses whether they are positive or negative.

On the one side, this is a much needed product and will definitely have its place in the market, once it gets past the Federal Drug Administration and their crazy bureaucracy. The negative is that will not happen within 12 or 18 months, but more like 30 months.

This will be an important product for anyone with diabetes that is on insulin.  And yes, I am on insulin.  Have I been in a situation where I would have needed the product? Truthfully, no.  Do I see myself ever needing this product?  Again, no.  Have I ever come close to needing this product?  Here, I need to answer yes.  I admit that the situation could arise, but as careful as I am, the lessons I have learned, and my body has always told me what needs to be done before things get out of hand.  Fortunate, yes, I am.

There are several sides to writing about a product in the development stage that I am trying to resolve in my mind. Before giving any more information, I would like your thoughts, please.

Vinegar and diabetes

Let me preface this post by saying “what works for you may not work for me”. When it comes to natural remedies, this statement is so true. If the cost is reasonable, as in the case of vinegar, why should not people at least see if it works for them.

While the only studies (only two and very small) are done by one person, Carol Johnston PhD from Arizona State University, Department of Nutrition, and these studies are held up by many people as fact. I will list several articles, but I can tell you that all cite the studies by Carol Johnston except article 5. Study one is here and study two is here.

Other articles citing Carol Johnston:

Article 1  By The American Diabetes Association (Surprise, as they are normally more conservative).
Article 2
Article 3
Article 4
Article 5

On the internet, there are many people with articles that portray vinegar as the natural remedy for diabetes, but do not list any studies. And for some people, some benefits are derived, but not for everyone. What is more interesting is the way people reference each other and keep referencing in a manner that seems very self-serving and have no basis backed by science. Even citing Carol Johnston would have made much more sense.

Roche Social Media Summit 2

As a new person at the 2010 Roche Social Media Summit I have to say that I was not sure of expectations. The programs went very well and the only disconnect was the AADE (American Association of Diabetes Educators).

Meeting fellow bloggers, people with diabetes, was a heartwarming experience and one that won't be forgotten. While I was looking forward to meeting other type 2's, it was educational finally meeting David Mendosa and Gretchen Becker, both of whom I have avidly read since diagnosis. It was a real treat meeting Charlie Cherry and Rachel Baumgartel and realizing that what I have been reading, is really them.

Researching on line is an enjoyment for me and realizing that there are others with information to share and all from a different background and interest has really fired me up. Finally meeting and talking to several of the type 1 PWD that I have corresponded with really helps and I hope that the information exchange can continue.

I know now that I need to read a few people more carefully and get to know them better from a personal standpoint. From the discussions that happened, I will say that all diabetes classifications were well represented, even those not in attendance. This year, it is my feeling that while everyone is cautious, there is much more open discussion and respect for both sides. Roche's discussion of what was learned at last year's summit did not disagree in substance with the blogs written by those attending then.

By the actions taken and material presented this year, the most value is the facilitation of open discussion by Roche between the American Diabetes Association and the on-line diabetes community. While it remains to be seen what will progress from this challenging discussion, there will be plenty of information to measure a year from now. I will say I am very pleased that there may be some real progress by the ADA in taking up the banner for the patients as well as the corporate side.

I will only say that I was very disappointed with the discussion by the American Association of Diabetes Educators and my opinion of this group only became more jaded. While I know a few very excellent people in the organization, their stature was not increased by the discussion. While I do not expect to see real progress this year, the idea of having people with diabetes in an educational role was an excellent idea raised by several attendees, and especially Cherise Shockley.

I don't know about the rest of those attending; however, the food committee did a superb, marvelous job. When I was asked by Roche for type of carb meal I preferred, I said moderate to low carb. The food was more than I expected and I was able to follow my plan of moderately low carb. For those involved, I appreciate your efforts! Thank you!

I was please to be one of the attendee's and extend my thanks to Lisa Huse and Todd Siesky for a job well done and to the rest of Roche's staff in attendance for their support.

Disclosure - Roche paid for transportation and lodging for two days and meals for one day.

Is summer heat affecting your diabetes supplies?

Do you know what to do during the heat of the summer to protect your diabetes supplies and equipment? A recent survey points out that about 60 percent of people with diabetes are not aware of the effects of heat on their oral diabetes medications, glucose meters, and glucose test strips. It appears that a large number also treat themselves and their diabetes with a similar degree of disrespect.

Even the three reports out of the meeting of the Endocrine Society all focused on slightly different aspects of the report. First, Endocrinetoday dot com reported on the habits and lack of daily care by those persons with diabetes. Sciencecentric dot com emphasized the problems faced by people with diabetes have of becoming dehydrated and not know what to do. Finally Sciencedaily dot com almost duplicated Sciencecentric, but stated that one out of five people did not take heat precautions until temperatures exceeded 100 degrees. Although parts are the same, you should read each article.

Since the full report will not be published until September 2010 in the Journal of Diabetes Science and Technology, most of the problems facing people with diabetes in the northern part of the US will have passed. I will commend them for putting out part of the details as summer begins. Yet every year, many people have the information available to them, but choose not to use the information until they have medical problems because of heat, or lose supplies, equipment, or medications to heat.

I blogged about heat/sun stroke part 1 (Apr 15) to part 6 (Apr 28) and know this may have been too early for some people to take seriously, but the heat of summer is here and we all need to be reminded again. Whether you live in Arizona where the study is conducted or in the northern part of the US, leaving your diabetes supplies in your vehicle on a hot day, will cause problems for your medications, testing supplies and equipment.

If you don't have coolers for carrying your insulin and diabetes supplies in for daily trips, you need to consider getting one. Also the Frio packs work well for protecting (from overheating and not freezing) your diabetes supplies in the summer and winter. Frio wallets can keep insulin safe for up to 45 hours. For wallets, just submerse them in cold water for five to fifteen minutes to activate. Frio Bags of varying sizes can also be purchased. Some drug chains carry them, but call beforehand. Or, search on line for Frio packs. These can be used for daily use to and from work, weekend daily excursions to your favorite park, and other trips.

For those of us with diabetes, we need to be aware that both insulin and oral medications are affected and can be rendered useless by heat. Heat will cause our test strips and meters to malfunction and quit.

The Joslin Diabetes Center also published “Five Tips for Caring for your Diabetes Supplies” They give excellent advice for caring for your meter, testing supplies, pump, and insulin plus being organized. I would only add for those with type 2 diabetes and not on insulin to take care of your oral medications and protect them from heat and freezing.

Care of your diabetes medications, supplies, and equipment is not something you will be able to ask your doctor about. Some may know, but this, like your diabetes is your responsibility as your doctor will not be with you when you forget and leave things in your hot car.

Now armed with the knowledge you need, get out and enjoy summer.

Non-diabetic Hypoglycemia

If you think this is about diabetes, you are mistaken. Food reactive hypoglycemia, reactive hypoglycemia, and hypoglycemia are all terms that have been used for a disease that is most often misdiagnosed. Diagnosis is often arrived at by the process of elimination. Low blood glucose is the culprit and hyperglycemia is not involved.

Why this on a blog about type 2 diabetes? Because I have a family member that has this. Even though there is a lot of misinformation (doesn't this sound familiar), there is a lot of good information available. The rule we use in discussions of diabetes of “what works for you, may not work for me” applies here as well. Not every solution will work for everyone.

The comparison between hypoglycemia and diabetes reveals many common similarities. While definitely not the same, both have no special diets available, although there are many who claim otherwise, and both have many people promoting their treatments as the only way. The largest difference is there is no gain to be had by the big pharmaceutical companies and as such hypoglycemia has no large research studies to define it or few ways to educate the medical community. See an endocrinologist for the greater chance of correct diagnosis.

Although this has not been conclusively proven, there appears to be several types of hyperglycemia. Reactive hypoglycemia and hypoglycemia are generally used interchangeably although they may not be identically the same and symptoms normally appear within four hours after eating. Food reactive hypoglycemia generally occurs at the start of eating and the quantity of insulin exceeds the need. And fasting hypoglycemia occurs when food is not eaten for what ever reason, illness is often the culprit. As of yet no genetic or DNA markers have been identified to hypoglycemia,

What are the symptoms? Some of them are:

• fatigue
• depression
• anxiety
• having trouble sleeping for nights on end or insomnia
• headaches
• personality changes rapidly
• always hungry for something sweet
• doctor says there is nothing wrong – I advise seeing an endocrinologist
• dizziness
• blurred vision
• heavy sweating 

There are more, but many are just subcategories of the above.

There are many good sites available. I highly recommend the first two sites. .

1.Site one    Lots of pages to explore. Take time to read the surveys page.
2.Site two    Many more pages to explore.
3.Site three
4.Site four
5.Site five
6.Site six
7.Site seven
8.Site eight

For more sites and to do your own research type “reactive hypoglycemia” into a search engine and read. Many sites do not properly reflect a proper separation from diabetes and hypoglycemia in diabetes. Hopefully, I have presented a diverse group of sites to show that there are many sides to the discussion and that one size does not fit all.

While many still claim that hypoglycemia is not related to diabetes, many former patients do develop diabetes later in life and many have family members or relatives with diabetes, Others say that people with hypoglycemia do not develop coma, but sites four and eight above shows that it does need to be seriously considered.

I may have raised more questions than I have answered, but there is still much that needs to be learned about hypoglycemia, its variants, and control with nutrition. Good progress is being made and more needs to be done.