Friday, July 15, 2016

Your Illness is Not Your Fault.


Word.

Your illness is not your fault.

Shared Medical Appointments

Doctor appointments are not something that most of us look forward to attending. We’re poked, prodded, weighed and asked lots of questions that we might not feel like answering. The idea of doing any of that in the presence of others doesn’t sound like something I would enjoy, so explain to me why I signed up to participate in a Shared Medical Appointment!

What the heck is a shared medical appointment? Visions of sitting in a room full of people wearing those horrid gowns, swinging their legs over the edge of the table…waiting, pop into my head. (shudder) Rest assured, that’s not what it is. It’s my understanding that the Cleveland Clinic started shared medical appointments as a way to work with larger groups of patients for their follow-up appointments. These patients all have the same condition/disease and could benefit from a group setting. Think support group/education. Here in Podunk, AZ, where we don’t even have a stop light, we have shared medical appointments! Just like in Cleveland but with more pine trees and less traffic!

Back in December, my HCP approached me about participating in their new type 2 diabetes shared medical appointments. It would start out small (6 participants) and would, hopefully, grow. She explained that each patient would have approx. 10 minutes with her to check our labs, weight and meds, etc. and the rest of the time we would be in a support group setting. Since I had tried to run a support group in our town, and failed, I was pretty excited to hear that they were going to do this. The biggest problem I had with my group was getting people to come and speak to us. Here was an opportunity to have professionals come and impart their wisdom upon our heads! I said, sign me up! I attended my third shared appointment this week and I figured it was time to tell you about the experience. It’s been a mixed bag.

The first appointment was just a chance to tell us what to expect and to ask us what we wanted to talk about. We filled out a survey and just generally chatted. We had our time with the doctor and got to know each other. There was horrid coffee available.

Second visit, 3 months later, we had a session with the dietitian. Ugh. Because I follow a lower carb diet, I knew that she would say things I didn’t agree with but she was also kinda pissy. I tried to keep my mouth shut and succeeded, mostly. She was actually spending a lot of time telling us what we can eat at fast food restaurants and which frozen meals are “good”! Thankfully, another participant spoke up and said, “I want to know what I should eat at home!” The doctor asked me what I thought and I shrugged.

This last appointment was conducted by a pharmacist and she went over the A,B,Cs of diabetes: A1c, blood pressure and cholesterol. She’s good and gave us a lot of good information. There were also lots of new people, which was encouraging. I also found out that they now have three groups! I think this is great and a much needed service.

The bad:
  • They push carbohydrates.
  • Not much time with the doctor. (I’m used to using my check-up appointments for everything and now I will have to have another visit to discuss lady stuff, my thyroid and fibro.) It feels rushed. 

The not great: 
  • I see lightbulbs go off over some heads during the conversations (which is good) but there isn’t always time to adequately explain things and they often end up looking confused.
  • While you are having your time with the doctor, the discussion continues in your absence and you might miss stuff.

The good:
  • Some of the people in my town who desperately need to take charge of their diabetes are getting needed education in a group setting.

Although I feel that this is a great service that my clinic is providing, I don’t know that I’ll continue attending. It’s not really something I need any longer. My HCP wanted me to participate because I’m a well-informed PWD and I could “share my wisdom” with the others. But, my “wisdom” often flies in the face of the usual diabetes education and I have no desire to be “that woman” who argues and confuses. Even though I feel that what I’ve learned about diet and my diabetes is valuable information, I can’t exactly stand up and contradict the dietitian. Who are the others going to believe? Answer: not me. I’ve reached a point in my life with diabetes where I have learned what works for me and that just doesn’t jive with the conventional wisdom. It seems that the best place for me to advocate is right here, and not in a support group setting. Unless I could help encourage those others to take charge, check their blood sugar before and after those carby meals and see what it does to their blood sugar. I don’t hear that advice being given. Hmm, maybe I’ll go one more time.


All in all, I think that shared medical appointments are a good thing, something that’s needed. It’s a beginning. Whether or not I continue to attend doesn’t matter, what matters is that it’s happening and it may help some lost souls find their way. I give it a thumbs-up (especially since we don’t have to wear those gowns!)

Thursday, July 7, 2016

Numbers: They Lie

People with diabetes live their lives with numbers; HbA1c, glucose meter readings, weight, lab results, etc. It sucks, to be honest. But I noticed something this morning that made me stop and think, that in a way, those numbers can lie to us.

Have you ever had one of those days when you just felt “thin”? I am far from thin, but sometimes I just feel skinny. I’m not bloated, I have energy, my clothes aren’t tight and I just feel good! One of the worst things I can do on those days is to step on the scale, but I often do. If the number on that scale doesn’t jive with how I’m feeling then I can begin to feel bad. My mind tells me, “Who are you fooling? You’re not thin!” Well, duh, I thought we’d already established the fact that I’m not thin! But that darn number can begin to niggle at my good mood and bring me down.

This morning I feel thin and I didn’t step on the scale! (Yeah me!) I started my coffee and stumbled into my office to check my blood glucose, like I always do. 151 WHA??? I ate reasonably last night, my fasting numbers have been slightly better than my normal lately and now this? My good mood from feeling thin today vanished when I saw that number.

“I guess I’m not doing as well as I thought. Maybe I should step on the scale and see for myself. Maybe I’ll eat ice cream and potato chips today. Why not?”

Those may not be the actual thoughts I had this morning but I’ve definitely had them before. One stupid, unexpected number on my meter or the scale or a lab report can cause me to doubt my ability to deal with this frickin disease.

Lies.

I’ve been reading a bit about depression and anxiety lately and one of the things I’ve seen over and over again from people who live with those conditions is that they lie. Depression lies (not the people who have it). It tells your brain things that just aren’t true and can cause you to sink deeper into depression. I feel as if the numbers we live with as people with diabetes lie to us as well.

These numbers are important and we need to pay attention to them, but we shouldn’t let them control how we feel about our progress. Our numbers are signposts. (Here’s where I shout out to Christel . She used this idea of numbers as signposts at the Las Vegas UnConference this past spring. Brilliant.) What does that mean? It means that the number on your meter is just a sign of how things are going this minute. It’s not a judgement. It’s not any indication that you’ve done something “wrong”. It’s just a number that helps you make decisions about your diabetes care moving forward. The 151 on my meter this morning shouldn’t taunt me and make me feel as if I’ve screwed up. It just tells me to eat low carb today and drink lots of water and go for a walk. That’s all. I still feel “skinny” and I won’t step on that scale!!

Think about this scenario: A newly diagnosed PWD has an HbA1c of 10. Three months later that number has gone down to 8. Wow! That’s wonderful news! However, if someone who knew nothing about that person’s journey saw an 8 they might think that person wasn’t doing very well. That 8 was lying to that outsider but it’s a great signpost for the patient. They’re doing a great job!


They’re just numbers; numbers on a scale or glucose meter, it doesn’t matter. Just. Numbers. Don’t let them lie to you and cause you to feel any differently about how you’re doing. Go ahead; feel skinny!

Sunday, June 19, 2016

Doubt

There are some things that I’m sure of:
  • Snow is cold.
  • Carbs are addictive.
  • My husband’s love.
  • The hospital is not the best place to spend your vacation.

There are some things of which I’m less sure:
  • The price of tea in China.
  • Selecting the best paint color.
  • What my dishes do when I’m not looking.
  • That I know what I’m doing when it comes to healthy dietary choices.

Ray and I had planned a summer vacation that would begin with a weekend camping trip with all my kids and grandsons in Utah, then north to Boise Idaho and east to South Dakota via Billings Montana. Instead we spent time in the hospital so Ray could have open-heart surgery. You know, like you do. In fact, I’m writing this on my tablet in his hospital room. This is day 12 here with a couple more to go if we’re lucky.

He’s doing amazingly well.

Ray was first diagnosed with coronary artery disease in July of 2008. He immediately quit smoking and has, over the ensuing years, added regular exercise, cut WAY back on beer consumption and made dramatic changes to his diet. He basically began doing everything he should to lead a healthy life and keep additional health issues at bay, and yet, here we are. The fact that we were doing everything right and his health still declined to scary-ass levels was shocking and confusing. Maybe all that research we’d done about healthy diets lead us down the wrong path! Maybe we don’t know what we’re doing after all! Did I just cook my husband into the hospital?

The answers: No, we do and hell no.

The body is an amazingly complex thing. There are no cut and dried answers or ways to ensure health. All we can do is our best, and we have been. When confronted with this situation, Ray and I experienced doubt. We wondered if our lower carb, no fear of fat ways had caused him to become sicker. Thankfully there was a doctor who explained it to us. Ray has heart disease and even though he had immediately changed his lifestyle, his disease didn’t just stop progressing. In fact, this great doctor told us that if he hadn’t made those changes he would have most likely become sicker long before this. In other words, his new lifestyle had prolonged a good life. Not only that, but his healthier body will most likely heal more quickly. Those changes were a good thing. Not one person, including the nutritionist, has had to tell us that we need to make changes because we already have! My husband is a rock star.

Dealing with any disease is scary, diabetes included. We are forced to make decisions about how we live, what we eat and the medications we take. Educating yourself on the best course of action for your life with diabetes is imperative. Make a plan and follow it. Don’t let doubt cloud your thoughts. Do what feels right to you and stick with it. If you feel stronger and healthier most of the time then you’re most likely on the right track.

Ray has a long road to recovery ahead of him but we’re hopeful that he will come out the other side able to continue doing the things he loves. There will be other chances for the family to camp together and Mount Rushmore isn’t going anywhere. Our summer “vacation” may not have ended up as we’d planned but we’re making the best of it and looking ahead to more years together. Self-doubt is a liar and I no longer believe it. We will make a few minor tweaks to our diet and forge ahead together. I hope that our story will prompt you to make some needed changes to your life too, whatever they may be.


Oh, and love your people like there’s no tomorrow. You never know.

Wednesday, April 13, 2016

Fighting the Good Fight, even when it’s hard

Yesterday was a bad day. It was the third day in a row that my fibro was causing me to feel horrid but I wanted/needed to go and see my mom, 40 miles away. I decided to suck it up and go, but then something was wrong with the car so I turned around and went home, disappointing my mom. Later, I had one of those moments where I felt I could make a difference in the world of diabetes by responding to comments on Facebook that were untrue and hurtful to people with diabetes, you know: myth busting. It didn’t go well. People are mean and hateful; so quick to poke fun at someone else. Yesterday I felt defeated and wondered why I even try.

There are so many things wrong with our world today, starting with the fact that people find it so easy to spew hate and anger instead of acceptance and kindness. Why is it ok to make jokes about someone’s disease? I recently lost a dear friend to cancer and my nephew is currently going through a bone marrow transplant. Would it be ok for me to make jokes about cancer? Should I sit back and ignore it when someone else makes fun? Hardly. Regardless of what the disease is or how it is contracted, there is no reason to laugh at someone else’s misfortune.

I’ve been told to lighten up. I’ve been accused of not having a sense of humor. I’ve been told that I’m wrong when I say that eating sugar doesn’t cause diabetes of any type. “But eating crap and being fat causes diabetes.” “Diabetes will go away if you’d just eat better.” “It’s ok to say “here comes diabetes” when someone orders a sugary drink. It’s funny!” “People who aren’t willing to take better care of their health deserve what they get.” Over and over I hear these types of remarks. Over and over again I do what I can to right the wrongs and inform the uneducated. Here’s the thing: They don’t care! They don’t want to be educated, they just want to laugh and go about their day.

Why do I do this? Why do I put myself into situations that often cause me grief? My sweet daughter reminded me that I’m not supposed to read the comments. Do not engage. She’s right in that sometimes I need to protect myself and just not go there. But on the other hand, how is this horrible situation ever going to change if no one speaks up? Is it ok to let the bullies win? Is it right that hurtful comments are affecting people and causing them unnecessary pain? I think not. Type 2 diabetes has often been referred to as an epidemic and the medical and scientific communities are clamoring to figure out what to do about it. The more they talk about excess weight and sedentary lifestyles, the more they feed the misinformation and trolls. Yes, a lifestyle of too much of the wrong foods and not enough exercise are risk factors for developing type 2 diabetes. Has anyone every stopped to think that the way people with type 2 diabetes eat isn’t much different than anyone else’s diet? Nope, they assume that we’ve spent our lives eating Twinkies and dozens of donuts… all the time. They just point fingers and laugh.


I know that I’ve covered this very subject many, many times, but yesterday it felt personal. Yesterday I could feel the knife in my back in a way that took my breath away. It’s fucking NOT ok to make jokes about diabetes and even though some days it will be difficult, I will not stop speaking up. I will not cease correcting the uneducated. I will not stop until my last breath because my tribe deserves better. I may not be able to affect much in the way of change but I cannot sit by quietly and let the bullies win. Thanks for “listening” to my rant. I feel better today.

Wednesday, April 6, 2016

The Importance of Education

Early on in my blog I wrote about what it was like to be diagnosed and how I was shoved out the door without any information or offer of education. I still recall all the range of emotions I went through over the years as I tried to figure out how to live with this disease. I was lucky in that I took the time to educate myself, often taking wrong paths but eventually getting back to the basics and shunning the snake oil. I was lucky, but many are not.

There are too many people who have been diagnosed with type 2 diabetes who remain clueless to the seriousness of this disease, either through ignorance or the desire to hide their heads in the sand. Diabetes is scary but it’s even scarier if we ignore it or fail to adequately understand how important it is to do all we can within our power to tame the beast. Besides the millions of people who have type 2, there are many, many millions who are walking around with elevated blood sugars, often called pre-diabetes. They don’t know they have an issue. They haven’t been tested. Some have received the news but are made to feel that it’s “no big deal. Just watch your sugar.” These people go on their merry way thinking they are “ok” because they are going to cut back on their sugar intake. They continue to eat in an unhealthy manner and probably don’t add exercise to their lives. Who wants to if they don’t “have” to?

Education in relation to type 2 diabetes has been my passion, for lack of a better word. It is something which I feel is sorely lacking and desperately needed. I am often frustrated because I’m just one person and I don’t know what it is I can do to stem the tide of misinformation and apathy. It has always felt like the “powers that be” weren’t doing enough to stress the importance of self-care and were too often hammering home the idea that we just need to lose a bit of weight and it will make ALL the difference in the world! Right. As someone who has been attempting to lose weight since my early 20s after my first son was born, I know that “just lose some weight” is never as easy as it sounds. Diabetes and controlling weight are very complex issues and I’m pleased to see more and more studies being done that say just that.

A couple of things have happened recently that have given me renewed hope; hope that people who CAN make a difference are speaking up. Unfortunately, those people happen to be celebrities, but hear me out. Two celebrities have recently spoken up about their lives with type 2 diabetes. Both have had the disease for decades and both are working with pharmaceutical companies to help educate people about living with type 2 diabetes. I’ve never been a fan of celebrity spokesmen. It gets under my skin when people feel that just because someone is “famous” they know more than Joe Shmoe about any subject, be it illness, religion or politics. However, the reality is that people DO listen to celebrities and if their message is clear and helpful then YAY!

“Dr.” Phil McGraw has teamed up with Astra Zeneca to present a plan to help people live well with type 2 diabetes. It’s called the “On it Movement”. I’m not usually a fan of “rules” and this program has “rules”. However, the rules are worthy. The list includes things like educating yourself, making a plan and finding support. I can get behind that. More recently, actor James Earl Jones has teamed up with Janssen in their type 2 campaign called “I can Imagine”.

Let’s be honest: both of these programs are designed to sell you a drug to possibly help you control your diabetes. You may decide that their medication sounds good and you might discuss it with your doctor. I’m not posting about these to encourage you to do that or to even support these medications. I’m not a doctor. There should be ongoing conversation between you and your HCP to determine what medication/lifestyle changes will work best for you and your diabetes. I think it’s important to cut the pharma companies some slack. If they don’t make money, then there won’t be any further innovations in our care. (I’m not going to discuss how often it seems as if they make TOO much money. That’s not my point here.)

Earlier I mentioned that I was more hopeful and here’s why: Lots of people watch the Dr. Phil show and if he’s talking about type 2 diabetes and how difficult it can be to live with it, discussing the emotional/mental side of our battle, then that’s an opportunity to encourage people to step up and do something about their health. James Earl Jones is a beloved actor who just happens to be the voice of Darth Vadar. That dude is serious! We’d better listen! Regardless of how you or I may feel about celebrity spokesmen, these men have a distinct opportunity to make a difference in the lives of millions of people. If their message stays clear and they don’t push the medication too forcefully, people may just learn something. That gives me hope.

One more thing: The Diabetes Prevention Program. A study was done that eventually teamed up with the YMCA that went about teaching people how to make lifestyle changes to keep type 2 diabetes at bay. These people had been identified as having pre-diabetes. The program includes dietary changes and added exercise and it worked.  People were able to have some control over their rising blood sugar levels and stave off full-blown type 2 diabetes. The federal government took notice and now Medicare has said that they will pay for people to participate in the Diabetes Prevention Program. I think that’s pretty huge.

Let me say right here that I do not agree with a lot of the dietary changes that the DPP pushes. There are way too much carbohydrates suggested, IMHO. I have learned, and many people with diabetes would agree, that lowering our carbohydrate level is imperative to attempt to control blood sugar. However, as I’ve said ad-naseum, I’m not a doctor nor a nutritionist nor a CDE. I’m just a patient who has learned what works for me. It’s going to take a long, long time for the “establishment” to get on board with what science has shown to be the best way to eat. In the meantime, think about this: dietary changes aren’t made overnight. People often do better when they ooze into them. Here is a quote from a previous post I did on this very subject:

The reality is that some people who are newly diagnosed have been used to eating upwards of 200 grams of carbohydrates per meal and the idea that they can miraculously reduce that carb intake to 35 grams is ludicrous at best. 

Let’s look at a typical trip to McDonald’s.  Big Mac – 46 gr carbs, large fries – 63 gr of carbs and a large Coke – 86 = 195 grams of carbs.  (information from their website) Wow.  (We aren’t even going to discuss fat and sodium.)  This meal is consumed by an awful lot of people in this country on a regular basis.  Now, compare that to a recommended meal for someone with diabetes.  3 oz. 90%-lean hamburger patty, 1 cup 1% milk – 12.2 gr carbs, 1 whole-wheat roll – 21 gr carbs , 1 cup prepared coleslaw – 15 gr carbs = 48.2 grams of carbs. (approximations by Kate) 195 vs 48.  Enlightening no?  I wouldn’t eat that recommended diabetes meal now.  I’d lose the roll and (add a lot more fat).  But that’s me and I didn’t get here overnight!

The DPP may not be perfect, but it’s a start. I applaud the “powers that be” for trying to get the message out there that poor diet and being sedentary are causing us to become unhealthy. A scenario of fast food and couch surfing can increase your chances of developing type 2 diabetes. They don’t cause it, but they increase your risk. That’s an important message that this program can deliver to millions of older Americans; those people who are at greater risk of developing type 2 due to their age.


Do I wish that people would listen to Joe Shmoe instead of celebrities? Yes. Do I wish that the idea of low(er) carb would find its way into the minds of those who are teaching people with diabetes? Yup. But in the meantime, I have hope that these types of programs will cause the masses to pay better attention and bring the severity of type 2 diabetes to the forefront and, hopefully, remove some of the stigma. Heck, if James Earl Jones and Tom Hanks have type 2 and they’re cool dudes, then maybe people will think twice before condemning the rest of us for just being normal folks who happen to have type 2 diabetes.

Wednesday, March 30, 2016

Sticking Like Glue

An article appeared in my Facebook feed yesterday, several times. The article caused some uproar among the DOC due to the fact that it showed type 2 diabetes patients in a negative light. We don’t like that. My initial reaction was one of disbelief and anger and I commented that I felt a blog post coming on. I was right; here it is. However, as I let myself calm down and think about this situation, my attitude shifted a little bit and I re-read the article with different glasses.

The article (which I won’t link to here because, well just because I don’t want to) was written for healthcare professionals as a guide to help them help their diabetes patients “adhere to treatment protocols”.

The article, upon my second reading, actually contained some good stuff. There were quotes from doctors with good advice to help patients with the difficult task of accepting and learning to live with type 2 diabetes. There were suggestions that showed that these doctors understand how difficult it can be to make the necessary changes we face. They encourage better communication between the doctors and patients; essentially helping people along instead of shoving them out the door to figure it out for themselves. The use of technology was mentioned and even *gasp* the idea of reaching out to other diabetes patients through support groups!

It’s been nearly 11 years since I was diagnosed and these ideas were non-existent when I found myself floating in a sea of WTF as I left that first appointment. I find it encouraging that there may be a swing toward more understanding of the shit-storm that living with diabetes is.

Now let’s talk about what’s horribly wrong with this article.

Failure.

The article lists 5 ways that patients don’t adhere to suggested protocols in their lives with diabetes, despite the fact that these protocols have been proven to show the best results down the road. Each and every one of the 5 areas was addressed as a failure on the part of the patient. The patient fails to make necessary lifestyle changes. The patient fails to adequately monitor their blood glucose. The patient fails to show up for appoints, etc. GAH! Just typing these things has raised my blood pressure yet again and made me feel like reaching through the computer screen and throttling the author of this article. The nerve! The unmitigated gall! The cheek!

Under each of these 5 horrible headings were some really good ideas about how HCPs can assist their patients, but who can get past the freaking headings! When depression, exhaustion or burnout cause me to slip up and eat things that I know aren’t the best choices, I’ve FAILED? Really? When someone can’t afford to buy extra test strips because their insurance only allows them 1 per day, they’ve FAILED to correctly monitor their blood glucose? The lack of adequate patient education on the importance of their medication regimen is a FAILURE on the patient’s part? THIS is what got our collective panties in a twist. Blaming the patient for the myriad ways the system fails us.

Words matter. Regardless of the fact that this article contains some good advice for doctors, it falsely blames the patient. Even an amazing HCP who treats their patients with kindness and compassion is seeing the word failure in conjunction with patients.  If you see a correlation often enough you can begin to buy into it; you can begin to believe that patients are failing without considering that the system might be failing us. It’s bad enough that doctors might look upon us as failures, but it’s even worse when we begin to believe it too; and we do too often.

Living with diabetes is hard; it’s unbefrickenlievably hard. We need to be uplifted and admired for the changes we do make. We need recognition for the mental anguish we experience and help to overcome it. We need better education. We need help, not labels.


People with diabetes work hard, every day, to do the best they can with a sucky disease. As a community we will never “adhere” to protocols 100% of the time but those words like failure will stick, like glue.