Guest Blog Post: The Perfect Storm

Disclaimer: The following is a guest post from a fellow reader of this blog, and a person living with type 2 diabetes as well as HIV. The thoughts and opinions expressed here are not necessarily my own, nor are they intended to diagnose, treat, or advise anyone's medical condition. Expression and platform for all experiences of living with diabetes are intended as a tool to generate awareness, increase our empathy and understanding and generate questions which we may take to our medical team. 

The Cause

What I’m about to write might sound like a lost script from some soap opera or an episode of Casualty or Holby City. Come to think of it the producers would kill for a story line like this as it’s complicated enough.

The amount of people I’ve spoken to about what I’ve been through whether it be friends of those in the profession have all had similar reactions of disbelief and come to the same conclusion what I’ve been through shouldn’t have happened. It even led to one consultant describing what I’ve been through as the perfect storm.

Definition: A perfect storm is an expression that describes an event where a rare combination of circumstances will aggravate a situation drastically.

My name is George Rodgers I’m 50 years old, I’m mixed race and I’m HIV. In 2000 I started taking a combination therapy regime containing ddI. I was fine for four weeks then started suffering agonising abdominal pain. I stopped my HIV drugs and two days later the pain went away. But by that time the damage had been done.

Blood tests had made it clear I had had pancreatitis (inflammation of the pancreas). As I subsequently found, the ddI regime had turned someone with a family history of diabetes into someone with the condition and quite a severe form at that. It’s resulted in a long struggle (as late as July 2010) to find a HIV therapy that didn’t make things worse.

There is a third type of diabetes that exists, which is caused by toxic damage to the pancreas. Although the most common cause is alcohol use, some drugs can also cause it, including HIV drugs which is what happened to me.

I received different reactions to my pancreatitis from my HIV consultant and a diabetologist I subsequently saw. My HIV doctor said, “Your amylase is up by 25% and we normally only start worrying if they’re up 50%.” The diabetologists reaction was “It’s a good job you stopped when you did or you would have been dead”

I feel HIV physicians are overly focused on HIV and not given my diabetes sufficient attention. Repeated requests to be referred to a diabetes specialist have been met with some reluctance both at St Thomas’ Hospital and at Queen Elizabeth Hospital. I found out about the diabetic team at St Thomas via my GP and I had to use blackmail to get an appointment to see the diabetic team at Queen Elizabeth Hospital (more on that incident later).

The pancreatitis had scared me from taking HIV drugs and I went on a treatment break for 18 months. My diabetes at that time was manageable with diet and exercise. When I restarted, with a CD4 count of 150, I went on AZT/3TC (Combivir) and nevirapine, chosen with diabetes in mind and did well for 18 months. Then unfortunately in 2003 I became resistant to the nevirapine and got accused by my consultant that I wasn’t taking my medication properly.

After some chopping and changing I was eventually kept on the Combivir and switched to a boosted protease inhibitor Norvir, indinavir/ritonavir. My glucose levels suddenly doubled to 12mmols/l. I felt really unwell, with high glucose levels you feel kind of speedy. I got bad tempered and emotional, alternated between feeling hyper and exhausted.

When my sugar levels shot up I went back to my HIV doctor. He said, “It can’t be the meds it must be your diet” and didn’t propose any diabetes medications. Despite being reassured 18 months earlier that if the anti-virals did start affecting my diabetes there was something they could do about it.

Once again I found myself changing consultants and met with the same response despite both my partner and me at the time and my CPN explaining in full the reason why I was having problems with anti-virals. I even sent her a letter out lining the issues I had. But I met with the same blinkered attitude that I’ve had all the way through this from consultants. Doctor Lyons response was “I don’t see what your problem is!”

Different Hospital Same Attitude

Once again I found myself back at square one and after a long talk with my partner and hammering home the point that if things go wrong this time I will not be held responsible for my reaction. He convinced me to change hospitals and see the same consultant that he was under at Queen Elizabeth Hospital.

I went to Queen Elizabeth Hospital and met with the same kind of reaction despite the consultant there knowing the problems I had at St Thomas Hospital. When I raised concerns about the medication she was giving me and asked, “How is Kaletra lopinavir/ritonavir going to affect my diabetes?” She totally blanked the question telling me it was down to my GP to sort my diabetes out.

Knowing full well that my GP doesn’t know anything about HIV medication I had no choice but to stay of medication. Not only that I wasn’t too sure how my G P’s reaction would be to treating someone who is HIV as I had just transferred to a doctors surgery that was closer to home. Not only that all this was starting to have an effect on my relationship as my partner couldn’t understand why I was having problems with Dr. Mitchell when his treatment and care was going so well.

The Fallout

The answer to that is his medication didn’t trigger of pancreatitis and leave him with diabetes type II. On several occasions he accused me of asking for too much and even went as far as accusing me that I was giving the consultant enough time to know me.

The consultant involved would have gotten to know me if she had had the decency to listen to what I was saying and not be so blinkered in her attitude and listened to my concerns. For 3 months I was telling her the concerns I was having about the medication she was going to give me. I only asked what anybody else would ask in that situation. Not only that she knew what I had been through at St Thomas’ because my partner had kept her informed, it wasn’t like I was going in as a cold case.

In the end I stopped seeing the consultant and I ended up moving out of my own home because I couldn’t get my partner to understand why I was reluctant to go back on anti-virals without my question being answered and precautions being put in place. I was taking this stand just as much for his benefit as mine, I saw the look on his face of sheer terror when I was doubled in agony when I got pancreatitis.

I moved back home just before Christmas 2007 and I made an appointment for the both of us to go and see a psychologist at Queen Elizabeth Hospital as I needed my partner to understand why I was so reluctant to go back on medication and why he needed to back off.

That went well, he backed off and I ended up getting the therapy sessions which lasted three weeks after I got a lecture in regards to the fact that I needed to be an A1 patient when it comes to taking anti-virals. My response to that was I’ll be an A1 patient when I get an A1 doctor and never went back after that.

It was roughly around this time that I went for hypnotherapy to try and get over how angry I was with what happened at St Thomas’s. I was told that I should take the anger down a level to just being annoyed and that doctors aren’t infallible they make mistakes and it seemed to work until I hit the same brick wall when I was at Queen Elizabeth Hospital.

I did take one piece of advice from that therapy session and that was to write down what I was feeling or what I needed from my consultant and so in June 2008 I wrote a letter to the consultant agreeing to go back on medication, by this time my CD4 was down to 29. I was given two choices I could start on a lower dose, something I asked for two years previously when I first transferred to Queen Elizabeth and was told no, or hit it hard by going on a higher dose.

The Fights

After a talk with the adherence nurse specialist and feeling comfortable after being reassured that if I had any problems with my medication I should hesitate to ring the hospital I opted for the higher dose but after three days of being on it I was suffering from some serious side effects. I rang the adherence nurse specialist and the response I got was, “This doesn’t happen to other patients” and had the phone put down on me. This was after explaining to her that I had previously been diagnosed with pancreatitis. Once again I had no choice but to stop medication.

The consultant’s response was no better when I saw her a week later. I was accused that maybe it could be psychological. There was nothing psychological about my sugar levels going into double figures, my metabolism going ten to the dozen and being sick two minutes after taking medication, I was bringing up bile and two minutes after eating my breakfast I was really hungry again. But it fell on deaf ears and so I ended up using blackmail and refused to go back on meds until I had spoken to someone from the diabetic team. I did see the diabetologist there, that’s was the very first time someone actually told me my diabetes was due to drug induced pancreatitis. The diabetologist also informed my consultant that I was right to be concerned the effects anti-virals have on my diabetes, as left unchecked diabetes is just as deadly as HIV if left unchecked.

Up until October 2009 I thought I was a so called unique case, I was even prepared to let go of my anger as I was transferring my medical care back to St Thomas’ (a consultant there had heard the problems I was having, he had read the article I did for NAM and had agreed to see me).

Then I broke out in shingles that’s how stressed out I had been about the whole thing, the doctor explained to me why I might be having trouble with certain medication and it’s all down to my genetics and something called micro toxicity. Thinking that this was something new I did a Google search and found out that this information has been around as late as 1999. Along with articles on HIV related diabetes: A Complex Interaction between liver damage body mass and genetics” and was reported by NAM way back in 2004.

I have had to go through hell and back with no proper support to get to where I am now. Not only has this had an effect on my health it also affected me on an emotional level and it had an effect on my relationship with my partner as we split up after eleven years. I don’t normally get violent but because of all the stress I was under g it was having an effect on my adrenaline levels which as we found out was having an effect on my sugar levels and because my partner was defending the consultant I was seeing as he hadn’t had any problems with her we ended up arguing and I got to the point that I actually went for him.

The first time I went for him was New Year’s Day 2010, we had had an argument the night before over the TV, there was more to it than that but that was the final straw and on New Year’s Day I just went for him. The only reason I stopped was because I was going to hit him over the head with a chair and so I walked out the house. The only trouble I was so pumped up that if anybody had said a cross words to me I would have gone for them.

The second time I went for him I nearly put his head through the bedroom floor and the only reason I stopped was because he bit me and that’s when we realised something was wrong. In the eleven years we had been together I had never got violent towards him. This was no ordinary case of domestic violence it wasn’t until the third time I went for him I managed to pick up a chair in one hand turn it round and ended up pin his head against the wall. That’s when I ended up doing a search on the Internet and I came across the effects of adrenaline on diabetics.

Adrenaline is a chemical that is produced by the body when it thinks it is under attack that is why you get adrenaline junkies because the rush can leave you feeling high. Stress can also cause adrenaline to rise the only trouble is adrenaline cannot tell the difference between a diabetic and a non-diabetic and that’s where the problems start and what was even scarier about the whole none of the professionals took any notice despite a community psychiatric nurse visiting our home and she must have notice the damage that had been done. It wasn’t until I rang the hospital and told my consultant at the time that I was getting violent that anyone intervened but as usual it was too little too late and that was when I made one of the toughest decisions of my life and after eleven years of being together I called time on our relationship because I didn’t trust myself when it came to my outbursts of anger.

How My Past Helped Me Through

When I first became HIV I ended up going for counselling. It wasn’t just about dealing with HIV it also helped me get over my low self-esteem caused by what I went through with my parents when I was younger.

My adoptive mother was warned about taking a mixed raced baby into a white family as there could be problems. And oh boy were they right, I could understand being picked on at school because of my colour but to have to go home and face it especially off my younger brother and no one done anything about it.

One of the questions I was asked was why didn’t I get angry at my parents for the way they treated me and my response was no matter how bad things are you always respect your elders and that’s how I saw doctors.

I was taught how to do the circle in cognitive therapy, I tried applying it to the situation I was in with doctors but it didn’t seem to work or so I thought because I found myself comparing to what I was going through with what I went through when I was younger.

My birth mother gave me up for adoption because she thought I would have a better life my adoptive mother was given that trust to look out for me and she didn’t she buried her head in the sand and I ended up suffering because of it.

The same thing happened here I was told that I could trust Dr Bubu, I was also told I could trust Dr Mitchell instead I got the exact opposite but instead of bottling things up I fought back and in some strange way I found the strength to do that by confronting my past.

And as hard as it was remembering what I went through when I was younger it helped me fight back and I did it on my own.

And The Fight Continues

It’s like the other day I received a Depression Scale form through the post because I’ve been prescribed antidepressants. I ticked all the relevant boxes then after reading through it I realised that all the questions asked how you are feeling yet there wasn’t a question on why you feel that way.

The reason I’m feeling the way I am isn’t because I’m depressed or the fact that I’m living with two chronic illnesses I’m feeling this way because the NHS let me down and put my life at risk. Not only that the damage that has been caused some of it is irreversible. At times I feel like I’ve gone through a car crash, at least if I had been in a car crash people could see the trauma that’s been caused and I would get the support that I need to get my life back on track. Instead I’ve had to do it on my own. Not only that the lack of consistency in my care doesn’t help either, if I can’t get the ‘professionals’ to understand just because we are diabetic we are still individuals and what works for one person it doesn’t necessarily mean it’s going to work for everyone else.

The ‘professionals’ can’t even agree on what our sugar levels are at or what diet we should be following. Here are two good examples. When I first become diabetic I was told by my diabetic nurse that my sugar levels should be slightly higher that someone who isn’t HIV because my body is working overtime because of the anti-virals, I was also given this advice last year by one the diabetic doctors at St Thomas’ Hospital. I tried telling this to one of the consultants at the hospital and he wouldn’t have it despite the fact that I become Mr Hyde when my sugar levels fall below 5 and as usual I got the same old crap that it’s just my body adjusting to the lower levels.

Try telling that to a policeman when I get arrested for thumping a complete stranger in the face because their baby was crying. “Oh excuse me officer I was having a hypo!” I haven’t actually done it but I came close to it the other day though when I was on my way home from my friends’ house.

I was on the 188 everything was fine, was in a nice relaxed mood. Then someone got on the bus with a baby and half way through the journey it started crying normally I would just ignore it but the more it kept on crying the more agitated I got, then someone started talking on the phone and the noise just seemed to have intensified and I just wanted to tell everyone to shut the fuck up. When I got home my sugar levels were 4.5, I wouldn’t have minded so much if hadn’t been for the fact that for breakfast I had two slices of toast, two boiled eggs and a bowl of cereal.

The other example is how the ‘professionals’ can’t seem to agree which diet to follow either everyone in the profession has been saying we should be eating plenty of carbohydrates, now the only problem with that is eating to many carbohydrates as recommend by the NHS and the government would be like drinking six cans of coke and the consequences of that leads to high sugar levels as I found out the other day. Wanting something to snack on I decided to go for a healthy option and brought a packet of those Ryvita Thins that they have been advertising on the television recently. Not giving it a second thought I started eating them as I was working on this before I knew it I had gone through a whole packet. Half an hour later I felt drunk, I did my bloods and my sugar levels had shot up to 17. I ended up falling asleep and my friend had to put me to bed as I was so disorientated. It took me two days to get over that.

Now some in the profession are saying we should be following a low card diet, which makes more sense and though it makes more sense so yet again the goal post have been changed.

Getting Family and Friends to Understand

One of the questions on the form asks do have thoughts that you would be better off dead, my answer is yes I do and it’s not because I feel depressed it’s because I’m having to deal with an illness where the goal post are constantly changing and I wouldn’t mind if it didn’t have to involve family and friends.

It’s bad enough having to get your family and friends why you have bad mood swings the worst one is when you find yourself becoming introverted and switching off from everything despite explaining it to those close to you whether it be friends, family or partners well in advance that you do get days like that they still find it uncomfortable like they have done something wrong which becomes frustrating for the diabetic as it ends up making them feeling bad.

No Pressure Then

Part of the reason a someone with a chronic illness finds themselves wanting to switch of is because the whole thing can leave you warn out and there is nothing you can do about it because you don’t know when it is going to happen. So imagine what it’s like living with two!

It’s like a friend of mine he does shift work and he can’t understand why I’m so tired all the time despite me trying to explain the reasons why. The reason I get tired so much is because my internal organs are on constant overdrive and as much as I try to live a normal live there are times through no fault of my own when having two chronic illnesses to deal with is going to take its toll no matter how good you are at managing things, the only trouble is you don’t know when it’s going to happen.

Another problem with all of this is the constant pressure we are under to get our sugar levels below a certain figure we are under pressure to keep fit. I have come to realise that I don’t have the same energy levels that I did when I was first diagnosed with diabetes, it’s all right for someone to sit there and say “we should be doing 30 minutes of exercise a day but it’s not always possible and we shouldn’t end up feeling guilty because we aren’t well or the weather is to hot or too cold.

Making A Change

There’s a strong sense of feeling that we are being treated like guinea pigs, HIV medication may be keeping us alive but it’s causing other problems as well and there seems to be no back up when situations like these arise.

I can’t change the past; once again I’ve got to live with the damage that has been done not only on a physical level but on a psychological level as well, for the past twelve years I’ve felt like I’ve been on an emotional roller coaster ride and though I’m in a better place now, I have a very good consultant and a very good diabetic nurse, (they both communicate with each other and take on board what I say and I’m not expecting them to have all the answers)..

I’m also beginning to realize that the one size fits all attitudes doesn’t only apply to HIV it seems to apply to diabetes as well and that isn’t good for the patient especially when they have two chronic illness to cope with. Some good has come out of this in knowing that I wasn’t asking for too much and I have a letter from an MP to back me up.

Taking an Holistic Approach

In the last decade the government and the NHS have been promoting a ‘patient-centred approach’ to health care which encourages ‘expert patients’, previous experience has shown that some healthcare professionals are unable or unwilling to deal with patients that do their own research and come to consultations with more information and questions than the ‘professionals’ can deal with. Rather than collaborating with the patient and help them set up a link with the different specialists we end up being bounced around from one doctor to another and none of them have a clear understanding of all the patient’s conditions and how they (and the medication that treats them) might impact upon each.

It’s no good getting the healthcare professionals to take a more centred approach if the various support services don’t take a more holistic approach to the service users that access their services. Not everyone who wants counselling has issues around family, sexuality or drug use and I’m a good example.

My issues centre on what I’ve been through and the damage it’s caused some of it irreversible:

1. I feel like I’ve been on a non-stop roller coaster ride these past twelve years.
2. At times I felt like I’ve been in a game of Russian roulette and I wasn’t the one holding the gun.
3. I feel like I’ve been robbed of something and that is time.
4. I feel like Humpty Dumpty who’s fell of the wall and I’m having difficulty putting the pieces back together again.
5. And on top of everything else there’s a sense of guilt.

I was told being on anti-virals was supposed to improve my life instead all I’ve seen is it do so far is rip it apart.

Diabetes and Anger -- Is There a Deeper Connection?

Two years ago, I wrote a blog post about diabetes and anger. In that post, I explored a lot of the day to day reasons why a person with diabetes might feel anger, and frustration. In fact, there are many reasons why a person with diabetes would, indeed, become angry. Those reasons can be varied, including anger at oneself for 'failing' to prevent the disease, to anger at family for not understanding or patrolling/policing the person with diabetes' behavior, etc. These are common types of anger: the anger that results from struggling to cope with a new and changing environment, for which we might have little control. (You can check out that blog post link, above, for a more in depth look at that topic.)

However, little did I realize that I was going to get such a huge response from the public -- but not about anger in this usual, common sense -- but anger in the chronic and mental health sense. Folks from all over the country have poured out their hearts to me in sheer frustration and worry over their loved ones, from sons to spouses, to friends. From lay people, to mental health professionals as well.

I must emphasize here, that I am NOT a mental health professional. I am not a medical expert of any kind, or a scientist. I am just a person with diabetes, with a blog. A person who loves learning every day, researching my own condition, and learning how to live and cope with it. Anything I say here is information you must take to your own clinician, or consult with your own mental health professional. It is also information that anyone can research on their own: never take my word for anything. Always be a skeptic.

Now that we have gotten that out of the way, let's start with the ways in which diabetes can clinically affect our moods.

Day to Day Blood Glucose Swings

When our blood sugars are not within normal or euglycemic boundaries (i.e., between 70-120 mg/dL, or 3.9-6.7 mmol/L), our mood and emotions will be altered. In some extreme cases, a person who, for example, experiences severe low blood sugar may become angry and even combative, or violent, or may seem 'drunk.' A person who experiences high blood sugar may experience sadness and depression, inability to concentrate, fatigue, etc. The root of all these glucose related mood swings has to deal with their association with the neurotransmitters in our brains, and how those in turn, communicate messages to our nerve cells about mood, appetite, and even sleep. Dealing with these states of mind is challenging, and can be tiring for the person with diabetes, as well as bring on a short temper. To top it off, having a negative disposition may also bring on bad blood glucose numbers, creating a vicious cycle that feeds off itself.

Chronic Mood Swings

The problem with being on this persistent 'roller coaster' of high and low blood glucose swings is that it can be bring about permanent, and chronic, mental health problems. Problems such as clinical depression, anxiety, anger, and a whole host of mental health conditions, like bipolar disorder.

According to a study on "Diabetes and Psychiatric Disorders," by the Indian Journal of Endocrinology and Metabolism, "Diabetes and psychiatric disorders share a bidirectional association -- both influencing each other in multiple ways." So much so, that apparently scientists back in the late 1800s found diabetes to be a disease which had been present in families with a pronounced history of mental health problems, so that insulin shock therapy was used as a treatment for mental health disorders even as shortly as insulin was isolated for the first time.  (Yes, insulin has a role in mental health, and even in the development of such diseases as Alzheimer's.)

This study further points out that there are several ways in which both diabetes and mental health problems can show up:

• As two parallel conditions, which developed independently of each other, with no apparent connection;
• As a complication of the diabetes, or as a complication of the mental health problem: type 2 diabetes may lead to depression, as well as depression may lead to type 2 diabetes, for example;
• As a product of hypoglycemia or hyperglycemia (and ketoacidosis), such as the development of chronic anxiety;
• And as a result of taking various medications for treating mental health -- many of these medications can lead to a triggering of a type 2 diabetes diagnosis. 

In my personal and anecdotal experience, I am a person who suffers from dysthymia. Dysthymia is a type of low grade, long term depression, which can subside and be in the background, for much of one's life. It is much milder than regular depression. However, in situations in which I have had an undiagnosed, and chronic health condition, such as hypothyroidism, or type 2 diabetes -- the imbalances in health provoked episodes of severe depression. The conditions influenced my depression and worsened it. In this way, uncontrolled diabetes can worsen or complicate a mental health condition that is already present, making overcoming of both conditions a challenge. 

It could very well be that the sudden and deep mood changes many persons with diabetes have experienced were the result of these drastic, and long term changes in blood glucose influencing an already underlying mental health problem -- especially if the diabetes was left undiagnosed or untreated for an extended period of time. It is particularly difficult for a person with diabetes that is weighed down by these mood changes, to find the motivation and positive inclination to manage their health condition. Quality of life tends to be reduced, and so does optimism, which can lead to development of unsavory habits, such as uncontrolled diet, smoking and drinking -- habits which can exacerbate mental health problems and lack of control, to an already breaking point. 

How Do We Help? 

In my previous blog post on anger, I noted several ways in which we could be of support to a person who was being burdened every day by the management of their diabetes. Being a good listener, helping a person cook meals, and being empathetic, are all proper ways in which we can deal with a loved one's chronic health condition. The Behavioral Diabetes Institute provides resources for us to utilize when we are overcome by our day to day emotions when managing diabetes, and may feel burnt out, or depressed. 

However, there are situations in which we need to be more proactive in identifying the mental state of our loved ones. Understand that, outside of a rare and severe hypoglycemic event, violent and aggressive behaviors are NOT standard complications of diabetes. These are not typical or normal behaviors for a person with diabetes. (Grouchiness is.) If a person you love is experiencing warning signs of serious mental health problems, you might need to have a conversation with them about visiting a mental health professional. This is an intimidating task, and there are suggestions out there, on how to broach the subject. 

The National Alliance on Mental Illness (NAMI) has a good Resource Guide for Families Dealing with Mental Illness. In it, they address what to do for 'crisis intervention,' when a person's behavior is particularly violent, or out of control:

If the individual with mental illness is in danger of physical injury, if his or her behavior is out of control or others are in danger, it is important to know what steps to take. Plan ahead by locating available sources for help: your emergency phone number (911), police or sheriff department number, Community Mental Health crisis or emergency number, name and phone number of a mental health professional, friends or neighbors who may be of help, and the nearest NAMI affiliate. Keep these numbers posted by the telephone. 

Any behavior such as this, that falls outside of both a mental health disorder, or a severe hypoglycemic episode, is unjustified violence, and should never be tolerated. Do not put up with it. 

. . .

Mood swings can be a standard part of diabetes mellitus and its attendant blood glucose fluctuations. However, when chronically unregulated, these blood glucose fluctuations can bring about more serious mood disorders. These mood disorders are NOT a standard symptom of day to day diabetes management, and will usually not ameliorate on their own. If you are living with a person who has become unpredictable, or violent, due to a potential mental health disorder, please seek help from your local community mental health centers, a mental health professional, or from your family physician.

Finding My True Hope: My Adventures at Stanford Medicine X

This is the fourth of a series of blog posts in which I will recount my adventures at Stanford's Medicine X, Conference: An experience which has changed my life, and I will not soon forget. :-) 

Patients learn to develop a strong voice. We have to... There are a lot of other voices, and interests, competing to be heard, and some, outright wanting to talk right over us. So, often times, a patient rises up above... and becomes an advocate: one who learns, and becomes an expert in their condition, as well as teaches others to self empower themselves, and keep going. As a part of that, it follows that the advocate will also seek to change their environment, change minds, and change the system as a whole. In that way, we're like a computer virus, really. We will never stop until we've re-written it all.  

Despite this same mission, advocacy comes with different voices, and we all get to choose that voice. I suppose... 

Though, when you have lost someone you love to chronic illness, I don't think you have much of a choice in what your voice will be. If you've worn gloves to help prevent infection for your father's in-home dialysis treatments... then, well... you no longer wear gloves much, if at all, when it comes to advocating for his needs, or the needs of someone else to follow in his journey. 

This might make us seem a little emotional, a little "Type A personality," a little pushy, a little obsessed, and perhaps... a little ANGRY. 

So, I don't want my dear readers to assume the worst from my Day 2, at Medicine X, either about myself, or about the conference. The reality is that my exchange on Day 2 is what makes Medicine X so unique, and wonderful, and freeing. Why, you ask? Why is someone talking down at me such a freeing thing? 

Well, the answer should be self evident: because I was allowed to talk back. Yes, I, THE patient... was allowed to have a conversation, to contest or refute, and to make a point. And for as much as I love other conferences, you're not going to find that at a TED talk. 

You don't need anyone to talk AT you -- you're an adult, and not a child. You're a being with as much critical thinking, and life experience, as anyone else holding a different type of educational background, or expertise. Honestly, there wouldn't even be any medicine without you... for YOU are the patient. And throughout MedX there were all sorts of folks expressing their various concerns, and input -- from Susannah Fox's now famous 'That's my research, and that's not how I chose to interpret my data,' to your regular advocate questioning potential 'overquantification' and privacy issues, to well, my now famous 'comment.' 

Medicine X is not a place for people to be 'perfect' -- everyone will have their biases, or their ignorance, or their differences of opinion or data interpretation. This is in no way a 'bad' reflection of the people who organize Medicine X, or of any of the participants, speakers, or guests, really. Nor is it a bad thing, at all. Medicine X is a place to have a CONVERSATION... and conversations bring outcomes, and education. Which brings me to... 

Day 3: The Doctors of Tomorrow... Today 

"Physicians are no longer the sole gatekeepers of validated health information ... The role of providers is evolving almost as quickly as technology. Value is no longer just knowing the right answers, but asking the right questions. And specifically, asking the right questions at the right time, the right place, to get the desired outcomes ... We are witnessing the evolution of value from content to context." -- Bassam Kadry, MD, Kadry Foundation, Stanford University, on the process and the whys of looking for new startups, and emerging technologies.

One of the most precious things I took away from Medicine X is that there are also other types of advocates: clinician advocates. The people who provide you with medical care, also tired of the state of affairs of their industry, and wanting to change their OWN landscape. Clinicians who understand that they are often, patients themselves. Or moms. Or voices for change, seeking to change the minds and views of their fellow peers, and embrace the new face of medical care. Doctors who understand that they no longer hold a monopoly on medical data.

Yes, that's right. 

Just like you and I... people who want to see change happen in how medical data is dealt with, how people are handled, how we all benefit from the system, and how well we all LEARN and make decisions together -- there are many, many, invested clinicians out there, who want to work hard to change the system. (And many of them work in boards, and foundations, who make conferences such as Medicine X happen.)

In the beginning, I thought "well, Medicine X is a conference about technology, and the bettering of medicine and patient outreach through technology..." but I was wrong. You see, it isn't just that... It's a lot more than that. Medicine X is a REAL coming together of PEOPLE: patients, clinicians, researchers, academicians, innovators, programmers and silicon valley entrepreneurs, investors, etc. People with various 'hats,' who make a giant think tank (and without all the noise in the middle from all the bureaucratic machines), and embracing their most creative self, seek to DO something about the problems... WITH technology. That's all it is. Thinking outside the box, with the new tools we have... and some cool music, and lights. :-) 

And it was so much fun! 

There were many sessions, some very hands on, and some going on at the same time in separate rooms, and I kind of wish I could have cloned myself to go to all of them. But hey, that's the beauty of technology, right? I learned about some of them through people's tweets, or through people's blogs... or through videos. Couldn't have done that as efficiently in 2002. 

My mind was refreshed and renewed with the beauty of other people's minds, and ideas... and it will be, for years to come, thanks to livestream. (If you haven't caught on, I have linked every "Day" subheading" to it's corresponding livestream link.) 

I love an analogy put forth by Esther Dyson (who spoke to me, and about my little comment, at Med X --  and it was quite an honor, really...) in which she discusses the breaking up of AT&T by the government. In essence, when AT&T was broken up, it really didn't fix the problem -- it only created a handful of other telephone companies, with (arguably) similar power. Instead, what really brought these companies to their knees was, what? NEW TECHNOLOGY. The wireless phone. Or otherwise, changing the rules. You take away their monopoly of data, and you get to redo the system. 

It'll be much the same with the medical industry. When we get together, and embrace the tools before us -- and how we tackle medical care and patient approaches -- we will get to rebuild that WHOLE puzzle, the way we wanted to from the beginning. The future is now, really. It's inevitable. 

... And in case you want to know, the speaker who I addressed with my little 'comment' was very receptive, and very polite. I am sure he will choose his methods more wisely, next time. (No, he was not an evil troll. Please forgive him. I have.) 

So... if I had to sum up my time at Med X, I could tell you that: 

• I was a lost villager... 
• Who found herself accepted for her self quantification... 
• And hence, found her patient voice and courage, 
• Leading to a true HOPE in her advocacy efforts.

I will try to share more, as I have time, on all the various technologies I learned. Maybe even arm wrestle someone into a guest blog post, or something. :-) But I want to personally thank everyone... for taking the time to read through my various blog posts, and ramblings. My 'life at Med X observations,' if you would.  

I may be the angry woman who writes about diabetes, but you folks make me the advocate that I am. I am indebted to all of you, and the wonderful people who gave me the opportunity of a lifetime to be a part of something big, at an institution such as Stanford University.

I will not... not ever... not soon. Never forget. ;-) 

Diabetic Humble Pie

It was Wednesday at 2 AM, and I couldn't sleep. I stared at the walls intently as if they held hidden messages for me; my own hieroglyphs to decipher. Suddenly, just like an omen in a bad movie, the soft light that usually bathes the bedroom's walls was gone; complete blackness engulfed everything. Five minutes later, there was light, alright... Lightning and thunder made their explosive way into the picture. The stuff usually soothes, and helps me sleep, but that wasn't going to be the case on this morning. This morning I had to rise early, and walk to work... and it was going to be a very interesting, and very wet, walk to work.

And I can't begin to tell you just how interesting. 

Let's just say I completely underestimated the situation, and thought it was just... well... an annoying moment of rain, and some fading thunder. At 4 am, though, let's just also say that some things are better left unseen. 

Most of the homes on my city's main avenue are small, and unimpressive. Not a blight, by any means, but just average homes that probably serve as 'first homes' to many newlyweds, or even some retired folks. They don't really have much in the way of yards, trees, or shrubbery, but I got to see a few fallen branches here and there, and that's common out here in Iowa during some of our Spring storms. No biggie. 

But then, you hit a slight bend up the road... and the homes become bigger, 'stately', and with sprawling large front lawns, gardens, and trees. You might even see a posh car or two, parked on a driveway; testament to how much someone, somewhere, makes. And this is where the horror began. 

Have you ever seen a a tree trunk that's, maybe, a few feet wide, in diameter? Yes? Now, have you ever seen it BENT IN HALF, like the bending of a simple tulip stem; like a Twizzler... Like it was made of rubber? Well, at this point in my walk, very MANY of the trees were in this state.

I got quite scared. The city sirens never rang that morning, and no warnings or advisories were in effect for my county. But I know quite well a few of you KNOW what this represents. Unless the Jolly Green Giant's bratty son was out and about, or Godzilla, for that matter... the only two things I know that can do this to such large trees are tornadoes, and hurricanes. And we don't have hurricanes up in the northern Midwest. 

I really didn't know if this was still happening in the vicinity... I sure didn't hear anything in the way of a "freight train" noise. But by then, I was closer to work than to home, so I tried to finish the journey as quickly as possible, and get out of harm's way. Stupid? Maybe. Later, in the papers, experts were looking into whether a tornado 'potentially' touched down in Ames. Well, you sure could've fooled me. :/ 

I was very scared, and when I get scared... I tend to get angry at the impotence of the situation. Scared of being alone, scared I have nothing to rely on to save my own behind, and very angry. I don't know why... like what could I do? Slap the sky? I guess I just want life to happen smoothly, sometimes, and not scare the crap out of me. Not force me into confrontations, or situations I don't want. I JUST WANTED TO DO WHAT I HAD PLANNED - GET TO WORK! 

But life seldom cares what we want, and we have to roll with it...

So we come to Friday, at the second job. I worked an 11-5 pm shift, and I'd been sick with a stomach virus for a few days. Really, foolish or not, I didn't have much in my stomach at that moment; I was just too scared I couldn't keep any of it down. 

Lunch rush starts at this Mexican restaurant, and I'm quickly into the groove of things, making order after order after order. It's okay...! I'm in my element! Things are going awesome... 

And then, without notice, the floor was made of lava, and I was in a movie, and people were watching me. And I was making those burritos... on a compartment, atop a roller coaster ride, and trying to hold on soooo hard to the railing. I think I thought the burritos were the railing, at one point. Everything was funny, and sooo not funny, at the same time. I got scared, and very angry.

I wanted to stop, but there was no one else there. I'm pretty knew, so people don't really know much about what I need, or don't need, and frankly... I only work a few hours, part time. I guess I foolishly thought I could get away with it. I *knew* that I was having a quite sudden, and quite low, LOW. But I couldn't stop.

"I can finish this lunch rush," I say to myself... I can. By the time rush was done, I'm sure some of my folding, and wrapping, looked as mangled as those trees on my main avenue. I was so sick feeling, and so scared... Like a person drowning, and their head rising in and out of the water. Where the hell are the jellybeans? I quickly announced I'm going on break -- whether people like it or not -- and NO ONE refused. They must've seen something in my eyes, and wisened up. 

Funny, the place is typically crawling in ho-hos, twinkies, and jelly beans... and not a damn piece of sugar was in sight. 

Luckily, I ate through 3 pieces of candy I had in my pocket (too scared to go down the greasy, steep steps to the basement, and find my purse, and get the meter and the glucose tabs), and a cup of regular soda... 30 minutes later things seemed to improve. My break was only 15. 

I will have to ask if I can keep things upstairs -- we can't really keep personal things, nor food, in the work areas. But it's going to have to be... an uncomfortable conversation. I just don't like to bring it up.

ALL I WANTED WAS TO DO MY JOB, AND FINISH, AND GO HOME. 

In the end, I took a detour through Alice's Wonderland of Diabetic Crap, and finished with a terrible headache... and NOT from the magic mushrooms. :/ 

I hate Diabetes. *&^%#! Diabetes.

Lesson: We can't exactly plan for every situation, in life. Who the heck knows when a tornado's going to come in, and rip through your lunch rush, at work... BUT we must be willing to reach out to others, and identify safe beacons along the way. Don't hurt yourself because you want to be tough, and stubborn, and stupid. Just don't. It's so not worth it... 

"One order of diabetic humble pie, please. For here." 

You Never Want to Feel That Kind of Panic When You Have No Insurance

This isn't exactly what I wanted to write about, tonight. I'm not exactly an "on-schedule" blogger, but I know this is definitely not what I was expecting to write about, tonight.

[Before I proceed, though... I just want to say that I don't want ANY pity. No pity... No feeling sorry for me... No hurting for my circumstances. No advice on what I could have done better (I will rip you a new one, if you do, just be forewarned). Life is what it is, and we are all dealt... what we are dealt, sometimes. Whatever that is. There are people, right now, going through a LOT more difficult circumstances. They deserve our support... so don't you worry about me. Also, this post might have a lot of swearing.]

I just need to process, and I need to vent. So to heck with it.

... Where do I start, I don't know. It's such a blur,  now.

Last Sunday.

Last Sunday, running my hands through my hair, while wanting to put it up in a clasp, I found a large, swollen lump or area on the upper right side above the nape of my neck. It wasn't entirely dissimilar to the one on my left side, but distinctly swollen feeling, and sore if one put gentle pressure on it... and irradiating discomfort.

Of course, being The Angry Type 2 Diabetic that I am, I freaked out... said a few choice phrases rhyming with "What the fructose??" and sort of felt the clammy feel of panic rising up my spine. (You never want to feel that kind of panic when you have no insurance.)

I decided, though... that I was going to remain calm. (HA!) Just monitor it for the week, and wait until Thursday (today), for the Free Clinic, to get it checked out. As things sometimes go, I started feeling... unwell.  "Woozy," feverish... just uncomfortable from the growing pressure in that area of my head... The "soreness" was starting to radiate down to my right shoulder, down my neck... And today, well, it was just difficult to focus, at work, and I noticed I couldn't really walk a good distance without feeling... just weird. Light-headed. Nauseated. "It's okay, though," I thought... "Today is the Free Clinic, and they'll have a look at it."

Now, the Free Clinic in my town is basically a rat pack of some medical professionals of various ilks who volunteer to provide some basic/minimal health care to uninsured people, no questions asked, and which only generally meets on Thursday evenings, from 6-8 pm. You have to arrive at 4 pm, though, and make quite the long line. Waiting for care often averages between 4-6 hours... and it's first come first served, of course. They can only see about 15 people.

The problem is... they used to have a somewhat permanent building, which has since been torn down by their tenant -- the next door church, while they make some new additions and changes to their facilities. So, the Free Clinic now has to share space with the next door church, and can only meet whenever the heck the church is not having some event. Which basically means... whenever a magic 8-ball decides.

I walk out there... just praying, praying under my breath that they are meeting. Lo and behold, as Murphy's Law loves me so much... They are not meeting. I think it's because of some stupid Pancake Day crap. I don't know. (Insert your personal sensibilities approved curses here.)

Then you have to make the tough decisions. Is this something that you think will go away; get better on its own? Am I overreacting? Is this... something that... could potentially get worse very quickly, and kill someone? Is this something that can be stopped, but it just needs immediate attention? I don't know... Do I go to the ER (because the local medical clinic is closed... and, even if it was open, they won't see me because I have no insurance and a hefty past medical bill that I can't prioritize to pay right now (don't judge me... you don't know me... and they won't let me pay anything less than an outrageous amount, every month...), while so underemployed and on food stamps...)? Or do I chance it?

Reluctantly, I decide... I'm going to go to the ER. I don't want to be the freak on tomorrow's front cover story that died within days, from something simple, or who knows what. The worst they can do is turn me away. And I was wrong. The worst they can do is shame me, while turning me away.

The doctor didn't even really look, or touch the area much. He basically pushed my hair around, said it looked exactly like the left side of my head, that he didn't see any physical injuries, and then asked have I ever cared to examine the left side of my head...

(Yes, doctor, the rest of us who aren't doctors are certainly idiots... We go entire lifetimes NOT touching our own bodies.)

....and then proceeded to tell me it was probably just me being worried about it, or at the very most a resented lymph node. He dismissed my other symptoms with the wave of a hand, gave me a smirk and a suppressed laugh, and said that I need to just let it stay like that, and come back in a week if it got much worse (with big disbelief all over his face).

I tried, very unsuccessfully to get his attention. He just basically acted like I was bullshitting him, and walked off.

Nurse Patronizer walks in. Nurse Patronizer notices I'm quite angry. I don't recall whatever tipped it off... (pffft!) But... Nurse Patronizer says to me "I don't know what you two discussed," and boy do I let the flood gates go... and I start crying, right there. She begs me to give her 5 minutes and goes off, basically to talk to Full of Himself Doctor, who says "Oh, she needs to just watch the area for 2 or 3 days (yeah, rather than a week, like he had said before... hmmm)..."

Nurse Patronizer repeated over and over again how it wasn't that I had no insurance, while at the same time pushing a flyer on me to go to the Free Clinic tonight.... After I had spent a good chunk of time explaining to them that the Free Clinic was closed. They wouldn't believe me, and kept asking me *why* it was closed. Now how in the &#$@ should *I* know?! All they had was a sign posted about "We will have No Free Clinic Tonight, 03/01/2012." I'm not their schedule keepers!

So, really... hmmm... If you are not punishing me for not having insurance, then perhaps you were punishing me for your perceived notion that I'm using the ER as a PCP provider's office, and not waiting until whenever the heck THEY would have given me an appointment (should I had been able to get one, which I know from experience, that I would have not, because of my outstanding bill. I know how those jerks work, too.)

So, off they sent me... With apparently, a few "lessons" for the road:

• You've lived with your body for 35 years... and are quite educated, Liz, but you don't know your own head;
• You have no insurance, and are underemployed, so you must be subhuman, or some mentally unstable person making stuff up... abusing our services;
• You are nothing more than money;
• I hope you don't die, but good luck. Suck it up, butter cup.

And THAT is the reality uninsured people have to put with... in America. 

I am, at home, and still feel... Odd... Feverish. Sick.

Off and on, it goes. I feel even more special I will get a nice, hefty bill in the mail, for absolutely nothing. For the theater of a man's arrogance, and a woman's patronizing. I've had more pleasant experiences there, before, but not today. 

Not today. 

When Ostracizing Type 2 Diabetes Became an Accepted Lifestyle...

When it comes to Diabetes, and the messages being put out there in the media, it is really hard for myself and other folks not to become angry -- if not downright furious. I have to tell you, I generally look through articles, and skim through different headlines, and just tend to "cherry pick" what's going to be real news, and ignore and pass over the fluff. If I were to read it all, I might be en route to a heart attack in less time than you can say "duck fiabetes."

But on Wednesday, just having gotten home from a long, physically and mentally exhausting shift at work, I failed to listen to my own advise. A dear friend of mine shared a news article, in my "Living with Diabetes" Facebook group... and I just lost it. I don't think I have ever been so outraged by an article before. (Well, except maybe for Wendell Fowler's abusive tirade against little Type 1 Diabetic children having ice cream. OMG, how dare they! That's almost as dangerous as Paula Deen having a cheeseburger! *snark, snark*) I was seeing so many shades of red, and purple, I just could not think straight. I said a bunch of things, in my group, about the article, and to my husband... went and kicked a few things around... flipped off Dr Oz on the TV... and then I felt like my head was going to explode. It was just too much.

Having taken at least, a few days, to calm down... I can probably now tell you what I really think about this piece, with a little more perspective. The piece is called "Curing Diabetes: How Type 2 Became an Accepted Lifestyle" (Yes, you are reading right... That IS the headline for this article), and it was written for The Atlantic, by reporter John-Manuel Andriote, who has supposedly been specializing in HIV/AIDS reporting since 1986. I guess, I would like to think that being exposed to such a world would have given Mr. Andriote some perspective, and a keener sense of tact, and to an extent it has... but, apparently, not enough to have helped him rethink such a terrible headline.

The article itself makes a few key mistakes, which well, to an outsider would not be as self evident. And why would they? Our current government, medical advisory agencies, and medical industry want to do all they can to pass blame onto the Type 2 patient, entirely, and take on NO responsibility themselves. I've shared on this, before, many times. Especially, the deep denial of how multi-faceted the triggers are for Type 2 Diabetes, and the roles pollution and other medications, etc., have in the development of the disease. It is unfortunate that everyone in the industry quotes such poorly done research studies that do not take these complexities into account, or even consider to do so, to blanket claim that 80% of all Type 2 Diabetes is "largely preventable." These simplistic allegations lead to discrimination, misunderstanding of a very complex disease, denial of health management resources and tools by the insurance industry, and uneducated reporting that often leads to societal abuse, bullying, and further discrimination.

Still, there is some good, among the bad, to be found in this article. I do feel that, had the author taken some time to meet with members of the diabetic online community, this article could have really shed some light more adequately, on a lot of issues that affect our community, without contributing so much to the problems it so tries to 'address.'


The Good in this Article: 

• Right off the bat, the article addresses the issue that the medical industry does not like to discuss with patients, or at least seldom does, the idea that they can manage their diabetes without medications, much less what Diabetes even IS. This is, indeed, a struggle we have right now. But it is a deep, and complex problem involving a lot of ethical concerns which affect almost every aspect of the health industry, including the American Diabetes Association itself (it's probably not an accident that they recommend diabetics keep their blood glucose levels at or below 180 mg/dL -- a very high, and potentially long term dangerous, blood glucose level), as well as other diabetes medical guideline agencies. The fact is, many medical professionals receive kick backs and incentives from the pharmaceutical industry -- large kickbacks and benefits -- and it's in their pocketbook's best interests to keep as many of their patients taking certain medications. This is not something exclusive to the diabetes industry, though. I am sure this is one of the prime reasons why there are now, commercials on mainstream media, for prescription only medications. It's BIG business, and there's no better salesman out there than your doctor. 
• Andriote does some thinking outside the box, which is helpful: Chronic illness, particularly obesity and diabetes, are multi-faceted diseases which do not have just one contributing factor to them (though at times he seems to suggest they do) and thus, will need a multi-sector response. He speaks about our sedentary jobs, and a poor transit system, and the lure of the food industry, and how addicting high fat/high sugar/high salt/food combinations can be... and the supposed "myth" that healthy foods cost more than unhealthy foods. He even quotes an article from someone who supposedly "destroyed" this myth. What is perhaps not understood by people who claim that healthy food is cheaper than fast food is that most dedicated Type 2 diabetics don't consider healthy food what they consider healthy food, and they have to cut back on carbohydrates in order to control blood glucose, and not rely solely on their medications for control. I'd like to see Andriote actually trying to live a lower carbohydrate lifestyle, at a grocery store, with a maximum of $350 for 2 people, for a month worth of groceries, and not being able to eat as many starches, grains, and other foods which ARE the cheaper foods, for their value and how far they go. Living on lean proteins, and veggies, and cutting back on all those starches and breads, and grains is NOT cheap. Also, per the fast food cost example he uses, if one assumes poor people buy value meals at fast food joints to feed all of their family members, one might be very, very naive: there is such a thing as a dollar menu, or less, at these places... And people KNOW this. How can you beat $2 for two double cheeseburgers at McDonald's??? It costs me $2.88 a lb alone, for chicken! (And it's cheaper in Iowa, than in many places...) 
• Andriote talks about the need for balance in media industry reporting (Surprisingly): On the one hand, you don't want people dismissing diabetes as 'not serious' enough, but on the other, you don't want to create a public backlash for patients. "When the media do focus on type 2 diabetes, said Sarah Gollust, assistant professor at the University of Minnesota School of Public Health, they give twice as much coverage to the behavioral risks for it than any of the other factors that contribute. But this over-emphasis on personal responsibility tends to blame and stigmatize people with type 2 diabetes or who are obese. Those living with the disease may feel it's their fault if they can't always maintain the ideal blood sugar level. Worst of all, said Gollust, public support could erode as people are expected to cover the costs, however they can, of a medical condition it's believed they brought on themselves ... Public support for addressing diabetes is imperative when you consider the tremendous amount of money it costs to manage the disease." This is a very important reality that we, as Type 2 Diabetes patients face as we strive to manage this disease. We NEED support, and we can't succeed without it. However, many of the undercutting remarks Andriote makes, including his headline, are FAR from being fair and balanced, and certainly not supportive! On page 2, Andriote has a "listing" of facts, and goes on to say that "Although there is a genetic predisposition for type 2 diabetes, the vast number of cases are the outcome of poor diet, obesity, and a sedentary lifestyle." Of course, this is contradictory... because ALL cases are of genetic predisposition. If not, then ALL obese persons would have diabetes -- and this is simply not the case. (I won't even go into his usage of the phrase "people of color" to talk about African-Americans, Latinos, and other minorities...) 

The Bad in this Article: 

• Andriote, sort of, implies that most Type 2 Diabetics could manage their condition without the need for medications, if they just try a little hard, and then they would be cured. There is a BIG disconnect in here: 
• For one -- he fails to realize that by the time the average person is diagnosed with Type 2 Diabetes, their disease is so advanced, they have lost nearly 40-80% of their beta cell function, making it extremely challenging to near impossible to control blood glucose levels without the assistance of oral medications, or insulin. Again, being the multi-faceted disease that it is, diabetes NEEDS a more aggressive and aware medical community, as well as increasing efforts in continuous education FOR the medical professionals, as well as patients. A medical professional who cannot think diabetes, and catch all the symptoms and markers of diabetes, in an age when it's being considered as an "epidemic," is a medical professional who will endanger lives, and contribute to the rising costs of the disease when it comes to complications that are not being caught on time. 
• Secondly -- The kind of lifestyle changes to achieve true remission and euglycemia, are a lot more stringent than what the ADA might tout. You *cannot* reach euglycemia -- true euglycemia -- while thinking that blood glucose numbers below 180 mg/dL are normal. True euglycemia are levels that are below 140 mg/dL or lower, after 2 hours of eating, and in fact, rarely exceed that. In fact, some might even say below 120 mg/dL at 2 hours, or less. Not everyone can achieve those levels -- especially, if they struggle with hypoglycemia, or  have other health related dietary considerations to make that might not allow them to easily cut back on carbohydrates, or increase certain levels of exercise, etc. I, for example, have to consume 80-100 grams of carbohydrate a day, at a MAXIMUM, in order to maintain my euglycemia. This is unrealistic to many people... and it's not a character flaw! It is HARD, often unrealistic, work. 
• Thirdly, he goes on to claim that if folks worked hard at it, they could "cure themselves," and he uses an opinion paper, mind you, to try to back up his assertions. He even goes as far as claiming that this is the opinion of the American Diabetes Association (ADA), by claiming that the ADA says that "maintaining normal blood sugar without medication for at least a year could be considered a "complete remission,"" when in fact, the ADA specifically highlights a the end of the second paragraph, in that same opinion paper that "The opinions and recommendations expressed herein are those of the authors and not the official position of the American Diabetes Association." Moreover, the panel of those expressing their opinions recognized that they had clear conflicts of interest in the matter, and also, found it difficult to reach consensus considering the wide arrange of questions to be considered. The group does, though, make a very telling distinction between a cure, and a remission... which the author of this article seems to gloss over, quite nicely, to what he could take out of context, and better fit into his piece: "Medically, cure may be defined as restoration to good health, while remission is defined as abatement or disappearance of the signs and symptoms of a disease (3). Implicit in the latter is the possibility of recurrence of the disease. Many clinicians consider true cure to be limited to acute diseases. Infectious diseases could be seen as a model: acute bacterial pneumonia can be cured with antibiotics, but HIV infection, currently, can at best be stated to be in remission or converted to a chronic disease. The consensus group considered the history of childhood acute lymphoblastic leukemia, which evolved from a uniformly fatal disease to one that could be put into remission to one that can now often be considered cured (4). Conversely, chronic myelocytic leukemia is now considered to be in prolonged remission, but not cured, with therapies such as imatinib ... For a chronic illness such as diabetes, it may be more accurate to use the term remission than cure. Current or potential future therapies for type 1 or type 2 diabetes will likely always leave patients at risk for relapse, given underlying pathophysiologic abnormalities and/or genetic predisposition. However, terminology such as “prolonged remission” is probably less satisfactory to patients than use of the more hopeful and definitive term “cure” after some period of time has elapsed. Additionally, if cure means remission that lasts for a lifetime, then by definition a patient could never be considered cured while still alive. Hence, it may make sense operationally to consider prolonged remission of diabetes essentially equivalent to cure. This is analogous to certain cancers, where cure is defined as complete remission of sufficient duration that the future risk of recurrence is felt to be very low."

You see, it is one thing to call something a "cure," because it is more hopeful, and more satisfactory to a patient... than for that to be, actually, a cure. The likelihood might be low, but it is, in fact, not a cure. As a comparison to HIV made above, for example, people like Magic Johnson have had their HIV infection in remission for years, but would would we say that he's cured? Not in a million years. Just because I can't "infect you" with diabetes does not mean I'm cured. This debate among colleagues does not equate to something actually being "officially" considered a cure. Obviously, operationally, we cannot treat presently uncontrolled diabetes in the same way as diabetes in tight control, or in remission... So DUH, it can be "operationally" a cure, but not in truth. Remission is remission. A cure, is a cure. This is truly, irresponsible journaling at it's best. 

I would add that the amount of mental focus that is required in maintaining diet, food carbohydrate counts, exercise, and meal planning often borders on obsessive and unhealthy, and ends in many an eating disorder for many diabetes patients. The psychological ramifications of attaining euglycemia, at all costs, for many... have NOT been assessed, and yet, they are just as much a part of the disease as hyperglycemia and other markers. Diabetes is NOT just a disease of high blood glucose!  

• The author uses statistical scare tactics to put the fear of God in you: But he does not put them in perspective. It's one thing to discuss how the rate of diabetes will triple, or double, or whatever. It's quite another to not discuss the rate of population growth, right along with that. Obviously, people ARE reproducing, and diabetes isn't just happening in a vacuum where the rate is growing by leaps and bounds larger than what it is. It's hard to say, because what will the population be in 2050? Our population is EXPLODING to what are potentially unsustainable levels, and of course, that's going to make numbers for any disease seem scary high, without some perspective. What would the rate be in RELATION to total population at that time? THAT is what the question should truly be... In addition, the author wrongly states that the prevalence of obesity has been increasing, year after year, when the prevalence of obesity has remained STEADY for the last 12 years.  Could it change, tomorrow? Sure... but for now, I think we can say many folks are starting to be more conscious of obesity, and their health, even if they might not see themselves as 'overweight.' Andriote fails to keep balance in the picture he's trying to paint.
• While Andriote wants to instill a sense of seriousness to diabetes, while claiming we need support, he attacks commercials with friendly faces and role models, claiming that persons who are fit, or joggers, or younger folks -- are not what most Type 2 Diabetics are like. Perhaps not (some) newly diagnosed Type 2 Diabetics, but is it wrong to have positive role models to aspire to? Is it wrong to see that some of us HAVE made changes, and CAN live a healthful life? Is it wrong for me to see another 35 year old I can relate to, on the tv? I fail to see just what he wants to accomplish, here. Does he want a fat, old Joe, sitting on a sofa, not able to move, and popping pills, or doing 'leg exercises' from a chair, because he can't move? Would THAT be more appropriate? Or perhaps, he wants people with their limbs amputated, like the city of New York's shocking diabetes ad campaign? I'm not sure what's the alternative he's looking for, here, and what's running through his mind. 

Of course, I can't end without discussing... that headline. "Curing Diabetes: How Type 2 Became an Accepted Lifestyle" ... I'm guessing he's trying to say most people just "accept" and take the diagnosis as a given, that they will need to live with this disease, forever... and take pills forever. But boy, is it an uneducated headline. Yes, people can live pill free, for a while... and depending WHEN they were diagnosed, if it was late in life -- maybe they might never have to take any meds, ever. But no, it's not a cure. Type 2 Diabetes IS a progressive illness, and the likelihood of a need for medications increases with the LENGTH of time we've had this disease -- and not exactly with how well we've taken care of it. Time goes by, and not in vain... our bodies DO age. Things break down. My father was in remission for years, yet he was never cured; diabetes still progressed, and still took his life. It happens.

Diabetes is not an "accepted lifestyle" anyone chose, anymore than people who got AIDS or HIV (by whatever method), CHOSE that as their lifestyle. I bet you $1,000,000 that this author would NEVER dream of writing "Curing HIV: How HIV Became an Accepted Lifestyle," merely because he read an opinion piece on how one can keep HIV in remission for YEARS. The headline even seems to sort of imply that we "coddle" people into being lazy about their care, and lazy about "curing themselves," so that we don't need to support them. It's not a disease, if you would, it's a "lifestyle." Yes, because Type 2 Diabetes is sooooooo glamorous. It's the lifestyle of the fat, and sloppy, and just give me my Metformin, over here. I'll take it with a side of that value meal, please. 

Sadly, Andriote could have done SO MUCH to advocate and help our community, but instead he chose the low road of blame, and veiled vitriol in between his lines. How someone who has written for the AIDS community can be so close minded about the needs of another equally ostracized community is BEYOND me.