August 16, 2013
First, let me give you a few warnings. You will be better served by most doctors by not telling them that you are using the internet. Why? Because they have overly sensitive feelings and it is their job to diagnose and treat you, and not the internet. One way to help you determine if you have one of the doctors that will be upset is to ask if they will suggest any internet sites that might be helpful for the problem, illness, or disease you are seeing them for as a patient.
If you are ignored, can see them bristle, or they say they don't want you on the internet, take them seriously. Some doctors will not answer your question. You will need to be prepared to educate yourself and you do not want to discuss your findings with this doctor. Do not bring reams of paper to your appointments as this can only create problems for you and may mean that you will not obtain the treatment you need. Yes, doctors have been known to dismiss patients that use the internet. Other doctors will give you some treatment, but not necessarily, the treatment or attention you need.
If you are seeing a doctor or doctors employed by hospitals or members of a large medical practice, (probably 10 or more doctors), expect them not to use emails with you and to balk at internet discussions. Their time is so restricted for each patient that they do not want to spend time in internet discussion. In addition, their emails are often monitored to the point that they only will use them for official office business and nothing for the patients. There may be a few exceptions, but I have not encountered any. Now that does not mean that doctors in single or small practices may not do things differently and there are those that do. I have been able to have some valuable discussions with a few. Blogging can have some positives, but you can expect some negatives.
One of the members of the diabetes support group I belong to, was told not to use the internet. Because he knew he would, he asked the doctor why. The doctor was more forthcoming than expected and stated that there was very little information on the web that was reliable. He said that there was information, but most of the reliable information was behind the pay wall and even then, much of the information was incomplete or misleading. In addition, when a group of us searched, the doctor was correct. There was conflicting studies, articles with no study basis, and in general we could tell that most was unreliable. At his next appointment, he asked the doctor where he could read reliable information. The doctor handed him a medical book that was well marked up and said if he would return it in two weeks, he could read the information in it. After he had read the relevant information, his comment to us that if it was not for the doctor's notes, even that was not the most explanatory. And admittedly, for a rare disease, this was the best source available to-date.
An acquaintance who likes to research on the internet commented to his doctor about information he had found and the next thing he knew, the doctor was leaving the room and telling him not to come back. Surprised? He was as he knew the information he had made a comment about was reliable and was on the professional organization web site this doctor belonged to. When he found another doctor, this doctor said he knew why he was looking for another doctor – that he had mentioned the internet and was dismissed by the doctor. The new doctor said he could use the internet and ask questions as long as he did not bring stacks of paper to the appointment. As their doctor – patient relationship grew, the doctor gave him the email address with the stipulation of not to abuse it, but that if he had a question about something he was reading, to send him the URL and his question and the doctor would either answer it in an email, or at the next appointment. This has worked out very well for both of them.
Second, there are doctors that are not bound by restrictions because they don't work for a hospital or a large practice and they are willing to talk freely about internet use. They will work with you and direct you to reliable internet sites. They may ask that you do not abuse their time, but in general will answer questions related to the problems you see them for as a patient. They may answer a question with a question to get you to think and often this can provide the answer if you carefully do your reading. If you are truly stumped, they will provide an answer.
My own personal advice is to treasure these doctors and do not abuse the privilege of emails and asking them questions. I have one doctor that I now have the home email address because the doctor knows I will not abuse it. It has been several months since the last question, but that was answered promptly and with many references that answered the questions I was encountering. The doctor could tell from my question where I was going and I know anticipated many of the future questions. I did send a thank you when I completed my reading as the references were great and I did not need to ask more questions.
I hope this gives you some thoughts and provides some ideas for your internet use and especially avoiding or creating problems with some doctors.
August 15, 2013
Part 2 of 2 parts
After thinking about the events surrounding what we were able to accomplish for George, I felt it would be good for all of us to have some points to refer to and for George to consider when he finds friends that have type 2 diabetes. Do not push unless you are a good friend and they do not balk at your offer for help. Even then, you may need to take time to gain their confidence. It does not always work as easily as it did for George or like it did for A.J.(first of four parts). Even the person from this blog has refused help, but his wife is talking to Tim and me rather frequently. He just does not want to take ownership of his diabetes and his wife is working patiently in the background to do what she can to encourage him.
Points for helping friends with type 2 diabetes:
#1. Determine what their level of diabetes knowledge is. This may require some time if the person is secretive. In the case of Barry's friend, it was just that he was not aware and he had not been told or received any education. We as a group were also fortunate that everything happened as it did and we had the resources to take action. Even Tim sent a letter from the group thanking the doctor for his efforts.
#2. Assess what they have been told by their doctor. Our case was easy as George's doctor had basically left him in the dark and had not given him any resources to help guide him. For some people this may take time, as they do not wish to talk about what is between their doctor and him/her. This is where we sometimes may need to back off and just let them know we are available to answer questions and that we have a support group available to call on.
#3. Evaluate what they are doing. Have them explain what they do for their daily care and then determine what they can afford to do differently. Explain the different lifestyle changes to them and where they might be able to make beneficial changes.
#4. Determine how insurance is helping and if necessary what it will cover. This may be an area that will be difficult to draw out, but if the person is not getting supplies, it may be necessary to strongly encourage the person to discuss this more openly.
#5. Is there anything that we can do immediately. We were fortunate with George that he was willing to let his friend help him. In this case, he needed to know his A1c and to obtain some testing supplies. He was very appreciative and surprised when he tested by how little pain he was having. He even stated that he would be buying extra test strips since he could afford them to be able to test more frequently and felt that this would decrease once he learned more.
#6. Talk about self-monitoring of blood glucose and its value. Barry told us the talk that he had with George about self-monitoring of blood glucose and how to interpret the readings. He even said he would be combing my blogs for reading material for him and George was surprised at my blog when he read a couple of blogs. Barry included the URL in an email to George.
Information that may be helpful for friends and others:
#1. Talk about medic alert jewelry and senior alerts if they live alone. This blog has this information and links to other information. Tim did cover this after a few of us needed to leave.
#2. Find out if they might qualify for VA benefits. For people that have served in the military, this is one benefit that can really save the day for some. If you are uncertain, contact your local Veteran Affairs Office listed in your phone book and find out when you qualify and how to apply.
#3. Find out if they are interested in self-education and research. I do encourage people to self-educate themselves, but not everyone is interested and many will not. Relying on the doctor is not the best thing to do, as there are many things only you can do to maintain your health with diabetes.
#4. Discuss locating financial aid and develop a list of sources. Many medication and diabetes supply manufacturers do have assistance programs. You need to contact them and follow their directions to receive assistance. I am still collecting information on this. One of the great sources is on David Mendosa's site at this link.
#5. Be available to answer questions. Often it is difficult to get people to ask questions because they honestly have no idea of what they need to ask. A few are bold and ask a question not knowing how it will be answered. What can be discouraging is receiving questions that are stated in an attempt to elicit the answer the person asking desires to hear. I know these people and they get the answer they did not want. At least most of the people that are aware of our group are asking questions they want an honest answer they can use.
#6. Discuss food plans and talk about different types of plans. Here again Tim covered this with George and there was more questions. Even Ben and Barry had a few questions. Since there are so many food plans, it is often difficult to know what plan is best. I can only suggest using your meter to discover what the different foods or combinations of foods do to your blood glucose levels. This is the way I developed my food plan, but with each person being unique, you need to develop your own.
After Tim, Allen, and I discussed the above, Allen stated there has to be more, but he would work on this and I could add those to a future blog.
August 14, 2013
Part 1 of 2 parts
The only persons unable to attend because of travel were Jason and Brenda. The topic was all about Barry's friend, George. George was happy to meet everyone and really felt he was in the honor chair, which in a way he was. It was because of him that we were having this meeting and to welcome him to Iowa. He was full of questions and why we stayed together as a group.
Tim explained that we had started out as a group of three originally and had added the next three quite by accident later. Tim and I had been in our favorite restaurant and waiting for Jason, and just before we had started a conversation with Lilly and her mother, Jason had called to say he could not make it. The three of us had met together the prior week. That day was probably the most interesting as Lilly had just been diagnosed with type 1 diabetes that morning and was full of questions. Tim and I had done our best to answer. Her mother was also asking questions that were more difficult to answer, but we did not fumble although we had to correct ourselves a few times.
We had been getting together every Saturday or Wednesday since the first of the year, depending on our schedules. This was just after the Memorial Day holiday two years ago, and Jason was not able to make it back in time. So Tim and I had been discussing getting together on Saturday as well. We did get together that Saturday and because the restaurant was busy, we offered our table to three others. As they were getting ready to be seated, the table next to it opened up as the people were leaving. Little did we realize as we were talking that we had ears on us.
It was Brenda, Rob, and Max that ware seated at the next table. Finally, Brenda got up, came to our table, and asked if the three of us had diabetes. We all answered yes, and Brenda turned to the others and asked them to move the two tables together. Yes, Brenda is that way and that is why we appreciate her. After introductions, we finished our food and started to talk. The three of them had been getting together on Fridays for a month and that was why we had not seen each other previously. We decided that Fridays could work for us, but they felt that Saturdays would be better for all of us.
Tim suggested that we exchange email addresses and telephone numbers to make it easier to stay in contact. Brenda did say that the month of August would be out for her as she had plans. Max and Rob said they would be available if we wanted to get together so we set up a schedule for the rest of June, July and into August and that the following week we would confirm if we would be able to attend. The following week we agreed to the schedule with Jason also being absent for two weeks during early August.
Allen said the rest had joined as they were discovered and or needed help as Ben and he had. He said Barry could fill in the rest later as we should get to the situation with George that had transpired the previous Wednesday. Barry agreed and admitted he had been slow on the understanding of why his friend had been using generalities in his discussion about diabetes. He said that finally about noon on Wednesday, he started asking some specifics about George's diabetes and that is when he discovered that his friend knew essentially nothing about his diabetes. He did not even get copies of his lab reports, have any testing supplies, and did not know his A1c results.
His friend could only say that the doctor was concerned that his A1c was climbing again, but climbing from what. George spoke up and said he had never been shown anything about testing so he did not even realize there was a way to monitor his own blood glucose. All he could remember was the pain when his doctor's nurse pricked his finger as she did it on the tip of a finger. He continued that Ben showing him how he did it eased it somewhat for him and he finally allowed Barry to prick his finger and he said he felt no pain. After the reading, they had tried to call Tim, but he was not answering his phone, so they called Allen and waited for him to arrive.
Barry said he was at a loss about what to do and did not do anything until Allen arrived. Tim explained that he was in a meeting and had his cell phone off. Allen said he had called me and I was on the interstate and would call when I could get off and be able to talk. Allen said he was ready then and was happy that I had my thinking cap on and by that time, they had contacted George's insurance and knew what he could be reimbursed for and would be covered under his insurance. They knew from taking to the local doctor that he was out of A1c kits and that we needed to find one. Since I was still not at the town where we see the endocrinologist, I said I would have Allen call there first, ask some questions, and have a prescription for the test strips. By the time I arrived, Allen had the information and I was able to obtain the A1c kit and get the test strips and head home.
After I arrive, Allen and Barry took George to the doctor appointment. Ben and I had time to talk and Ben had said this was all new to him and we all had to learn from this. I agreed and said this was something we all needed to know and we had better learn from this. George spoke up and said he now understands how serious his A1c is and that an 11.3% is not good. He said the doctor was very emphatic about him going on insulin and was able to get an appointment with an endocrinologist about two miles from where he lived. Therefore, he would be leaving earlier that he had intended, but he would be back one more time this year when he had the insulin down and knew how to handle it. He thanked everyone for what we had done and said he came to the right place to go on vacation.
We talked about what could have been done better and why things like this needed to be built on for future instances. Allen and I both talked about the VA and George asked how he could sign up. I said I am not familiar with his state, but he needed to look up where the nearest VA office was located and start asking questions. Ben said why not go to our local VA office and ask if they knew whom to contact. Allen and I both agreed and told Ben and Barry to do this early Monday. Allen said that with the VA he should be able to obtain his testing supplies at no cost and pay less for his insulin and other prescription medications. George then stated he sure picked the right place to go for a vacation and then asked what else he should know.
Several of us needed to leave and Tim said he would cover as much as he had time for and then send out an email for George to read when he arrived home. George said you would do that. All of us said yes, that is how we also help each other. He asked George for his email address and said he would see to it that until he came back, he would be included in the emails. Then he could decide if he wanted to continue. He would be welcome to ask questions and we would do our best to answer them. Barry said he would explain how it worked and to send him the questions and he would distribute them where he felt best. Therefore, those of us needing to leave left and they continued talking.
Tim said they covered many topics and George was asking how much research we did and Barry said he would help him get started after he had his appointment and was comfortable using insulin. Tim had said that was probably best so that he could concentrate on his health first and then start his research. Tim told George to take care of himself first and the rest would come. That was why he would be sent emails that everyone received and he could ask any questions he had.
Barry sent out an email saying that Monday morning he had found out whom to contact for getting his VA application started after his endocrinologist appointment. He stated that George was on his way home.
August 13, 2013
Problems can happen when you least expect them. Barry was having a friend from his previous town on a visit with Ben and himself. They had discussed and talked about diabetes, but nothing had been discussed in specifics. Then the second day, Barry did ask his friend what his last A1c had been. His friend said he did not know as the doctor had not told him. Barry said the only comment he could remember was something to the effect of watch what he was eating as it was creeping back up.
This caused Barry to ask what his blood glucose reading had been that morning. He got a puzzled look and a question about what was a blood glucose reading. Barry patiently took out his testing supplies and showed his friend. His friend did not know anything about what he was seeing. Barry asked if he could do one test as it was about time for the noon meal. His friend said okay, so Barry pulled out the lancet, inserted a new one, put the device back together, and armed it. His friend hesitated and said you aren't sticking me with that.
At that point, Ben took his out and asked Barry's friend to watch him. Ben pricked the side of his thumb, set the lancet device down, and reached for the meter he had previously inserted a test strip in, as it was now ready to receive the blood. After the blood was wicked into the test strip, the meter took about five seconds to give a reading of 96 mg/dl. Ben recorded the reading, with a tissue, wiped the excess blood from his thumb, used the tissue to pull the test strip out of the meter, and discarded both in a wastebasket.
Barry's friend asked why he had used the side of his thumb and not the tip or sole. Ben explained that the side had less nerves and he had little or no pain on the side and that he could use the tip or sole of his thumb or any finger as he had pain insensitive fingers at his age. Ben said that yes, he occasionally hit a nerve and could have a little pain, but in general he was not concerned. Barry's friend said that the doctor he went to, the nurse always used the tip of a finger and it always hurt, but if there was less pain on the side, he would give it a try.
Barry said he put a strip in his meter and adjusted the lancet device to the lowest setting. His friend held out his hand and Barry said he rested the device on his small finger and pressed the release. When Barry lifted the lancet device, he said his friend was still expecting a sting. There was sufficient blood with a small squeeze so he inserted the test strip to wick the blood and when the meter reading showed it was 298 mg/dl. Ben asked if he had taken his medications to which he stated not until the noon meal. Barry asked if he could see the medication and his friend hauled out the container. The directions said one at the noon meal and one at the evening meal. It was for one of the sulfonylureas and the dose was small.
After the noon meal, Barry called Tim who was not available. Then he called Allen who was also out of town but would be home shortly. Allen told Barry to call the local doctor and ask him the questions. Barry was hesitant, so Allen said he would call after he had talked with them. When Allen arrived about 2:30, he was given the information and Allen asked them to call Barry's friend's insurance company to find out which meters and test strips were on the approved list.
Then Allen called the local doctor and asked if he could do an A1c test and go over the medications Barry's friend was taking. The doctor could see him that afternoon, but did not have the A1c kit as the order had not arrived that day. That was when Allen called me. I told Allen where I was and that I would call back when I could get off the interstate which I did. That was when I started to hear of the problems. I suggested that they start calling the pharmacies starting with the pharmacy near the clinic at the hospital and ask for the Bayer A1c kit. Then if they did not have any to go to another pharmacy until they found one. Then I remembered and suggested he call the diabetes clinic first to see where to find one. Allen said he was grateful I knew where to start and said he would wait until I called to tell me where to go first.
When I got near the diabetes clinic, I called Allen and he said the clinic could sell me one and to go there first. Then I would need to go to the pharmacy to get a meter and two containers of test strips for which Allen gave me the name. I made the stop at the clinic and I asked if they could sell me a meter and if I needed a prescription for the test strips. I briefly explained the situation and was given the meter and a prescription for two containers of test strips. I paid for the A1c kit and went to the pharmacy to get the test strips and headed for home and Ben and Barry's residence.
At that time it was time to take Barry's friend to the doctor, so Allen, Barry, and his friend left with everything while Ben and I talked and waited. When they returned, Barry said the two of them would go to the pharmacy and get his new prescription filled and then he would pay me. Allen said the doctor had received permission for the charges to his insurance and for his prescriptions. Allen also stated that the doctor agreed that he should start on insulin and that was the prescriptions plus metformin. The doctor had also stated he knew an endocrinologist near him and would be calling him to set up an appointment as soon as possible.
When Barry and his friend returned, his friend said this is quite a community you have here. Barry said he hoped so as we had saved his hide. Barry's friend asked how we came together as he did not know of anything like this where he lived. Allen stated that most probably wanted to keep it a secret and therefore very few even talked about diabetes. Barry had to agree and said this was a unique group and he was happy to be part of it. At that point Barry's friend, thanked me and paid me saying that the delay was so he could get the extra cash when he used his debit card.
Barry asked how I knew where to find things so fast and I said it is just knowing who to ask. I explained that the meter had not cost him anything as my clinic had supplied that because of the people using it. I said knowing what his insurance covered also was a great help. Allen said that was good and he asked Barry's friend if he could remember this for the future is it became necessary. The answer was yes, and that he had learned a lot in about five hours and he would be working on reinforcing his memory. I said that with Ben and Barry he could learn quite a bit.
Tim arrived then and was introduced. Allen and I made our exit and received profuse thank you's for our part and it was agreed that those of us that could, should get together on Saturday to cover the events. Barry said he and Ben would send out emails about the events and lessons learned. Allen said he would add another if necessary.
August 12, 2013
I cringe when I read blog titles like this “Five Big Diabetes Fears—and What to Do About Them.” Yes, I know, writers prerogative to bring readership, but I still cringed and went on to something more positive to read, which there were a few articles and blogs. I did not need to do much searching. I discovered some positive or what I would term semi-positive news on Medscape titled “Diabetes Not Linked to Dementia.” This does not agree with many previous articles saying that there is a link to Alzheimer's disease, but this study seems very sure of itself.
After reading several more semi-positive articles, I decided to return to this negative blog. I will take the five supposed fears and see if I can make something positive out of them.
#1. Low Blood Sugars This is the one that can cause the most fear for some people. Since I am an insulin dependent type 2, why does this not create fear for me you may ask. Probably because I have not had that many severe episodes of hypoglycemia – only two that were below 50 mg/dl, one at 48 and another at 42. I was able to recover very fast with glucose tablets and did not worry further. Yes, I have had another couple of episodes below 60, but at 58 and 59, I never was overly concerned.
I do understand type 1 people getting concerned when they “rage bolus” with their pumps and don't know how much insulin they may still have had in their systems. I read several type 1 bloggers that seem to be on a yo-yo string of highs and lows in a day and that would scare the dickens out of me. This is why I will stay with my multiple daily injections and think nothing of it.
I have been fortunate to have been supplied with one of the best names in test strips and the meters to compliment them. My episodes of hypoglycemia mentioned above have come when I inject my short acting insulin too close to the last injection of the long acting insulin. I normally realize this as soon as I have put the syringe down and then I take immediate action to prevent the oncoming hypoglycemia. I start testing in the next 15 minutes and repeating at 15-minute intervals. Once I know that a low is happening, I start taking my glucose tablets. I repeat this until the trend is back to the positive side and continue until I am back above 70 mg/dl.
Only one time did I get the shakes so bad that I had trouble wicking the blood into the test strip. Once I drop near 65 mg/dl, I start sweating profusely and I reach for the meter and test strips and start testing. Most of the time, I can correct it with one 15 gram tablet of glucose. But be careful as there are several different types of tablets – from 4 gram to 15 gram tablets. I have been able to locate 15 gram tablets and prefer using them.
#2. Microvascular Complications This is no longer for most people a concern because of our equipment that we have available today. Yet, I look at those that are not managing their diabetes and wonder if they aren't having some real fears. Most type 1 people are trained how to manage their diabetes, as are most type 2 that use insulin. The microvascular complications of loss of sight, nerve pain, and kidney disease are often not a problem for these people unless they are not managing their diabetes.
Now I would be remiss in not being concerned about the type 2 people on oral medications. These are the people that our “experts” degrade and say they should depend on their A1c results for knowing how they are progressing in their diabetes management. Talk about the blind trying to lead. They are slowly forcing these people with type 2 diabetes into the dark because they have no idea of how they are managing their diabetes until they receive their A1c results. Many still don't know because their doctors don't tell them what the results are.
Recently, I was not aware of the panic in our support group when one of Barry's friends came for a visit. He and Barry had been talking about diabetes, but not being very specific. Then the second day Barry asked his friend what has last A1c had been. His friend said he did not know as the doctor had not told him. Barry said the only comment he could remember was something to the effect of watch what he was eating as it was creeping back up. I had been out of town that day and several had been called to see if they could locate an A1c test as the local doctor was out and had not received his order yet. When they finally called me, I was able to stop on my way home and found an A1c testing kit. More about this in another blog.
#3. Macrovascular Complications This is more of a concern than many will admit. Anyone with diabetes is at an increased risk for heart problems, but we still need to be concerned as most doctors shove statins and other medications at us and fight to keep us on them. Why the author did not cover the one area of greatest concern is beyond me. We all need to be aware of atherosclerosis. This can cause poor healing of wounds in your legs and feet. This is the cause of most amputations because they become infected and even more difficult to heal.
#4. Food Changes Many people get all tangled up in the panic panel on this one. Most are type 2 people on oral medications are not given the testing supplies necessary to help them discover what the different foods do to their blood glucose levels. By testing and eating to their meter, they could discover what foods to curtail, eliminate, reduce in quantity, and which they are able to consume in their meal plan. Since there is no specific diabetes diet, food plan, or even guidelines, many people return to eating what they had been eating and away goes their diabetes management.
Each person needs to determine what their bodies can handle and by using their meter can develop a food plan that allows them to manage their diabetes. In this determination, what another person is able to consume may not be what they are able to consume. I will always urge each person to see if their doctor will attempt to get approval for the first six months to be allowed extra test strips or if they are able to purchase the extra.
People on insulin would be better served by finding out what they are able to include in a balanced meal plan and what their meter tells them as well.
#5. Medication Issues Many people become highly agitated when they are told they must take insulin or a pill to help manage their diabetes. Those with type 1 diabetes must inject insulin and they have no choice if they wish to live. Yet, many people with type 2 diabetes, take the prescriptions, stuff them in a purse or pocket, nod to the doctor and as soon as they are outside, head for the nearest health food store, or natural supplement shop and spend money by the fist full for something “natural” that the sales clerk recommends.
What they don't admit is that they have substituted one medication for another medication. Unfortunately, the natural medications will not help them make any improvement in their diabetes and they may or may not return to their doctor until they start to develop some of the complications. But they don't care, they haven't taken any of the prescribed chemicals, so they are happy. I can only say, good luck and don't complain when the complications start.
Then I haven't mentioned those with literacy problems and can't follow medication directions and wonder what is happening when the doctor asks if they have been taking their medications because of little or no improvement in their A1c levels. Most doctors are not working to help those with any type of literacy problems.
In addition, please read these two blogs. The first is about what you need to know immediately after diagnosis and the second is about the best level of blood glucose management.