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.

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The Diabetic Ice Cream Social has been my baby for a few years now. It�s really been everyone�s baby. It�s been a special thing for me to fight misconceptions, and to spread a little bit of change in everyone�s mindsets as to what a person with diabetes can and cannot eat � as well as what moderation looks like. The idea that a person with diabetes gave themselves a disease is repulsive to me, as well as the idea that foods are �bad� or �off limits.� As a person with an eating disorder, as well as diabetes, I feel that moderation (and not deprivation) are key to managing our daily lives with a modicum of enjoyment and success.

So, in 2011, when a local Indiana chef wrote a poorly educated column on type 2 diabetes, he stopped my world. In his misguided crusade against people with type 2 diabetes, he sought to attack the local Diabetes Youth Foundation of Indiana for holding an ice cream fund raiser in order to help children with type 1 diabetes go to diabetes camp.  There isn�t just something wrong with attacking children with type 1 diabetes trying to enjoy life as any other child � there is also something wrong with someone who tries to shame our food choices, and create food militancy. Food militancy is something we don�t need in our body image obsessed society. Food militancy is one of the triggers for disordered eating, and many of the common eating disorders affecting our current society � including diabulimia.

Food militancy is also creating a lot of shaming of people with type 2 diabetes and this has got to stop. NO ONE gave themselves diabetes � not a type 1 and not a type 2. People with diabetes are people who were predisposed to developing the disease, for one reason or another. No one knows what triggers type 1, and though obesity may trigger type 2, the fact is that millions of obese people will never develop type 2 diabetes. We all struggle making the healthiest choices for ourselves, and we all need to learn moderation� and we all suffer from bad luck. Life just happens. The #1 risk factor for developing illness is living. Being alive. But one thing is for sure: none of us need deprivation and shaming.

This is what we seek to spread with the Diabetic Ice Cream Social. We seek to spread a renewed view of the person with diabetes; a renewed perspective, as well as a healthier attitude toward food. I have had some pushback from a few folks with different perspectives � and that�s fine. I respect their life path for managing their conditions. But at the same time, I have had thousands of partners in this crusade � the crusade for freedom to make the best choices we know we can make in order to manage diabetes, without fear or shame from others.

The Diabetic Ice Cream Social is a celebration of life � and you may choose to celebrate it any way you want. You can have an ice cream scoop in any way you please: make it lactose free, fat free, sugar free, make it sorbet, make it wine. Make it whatever you prefer � but make it a statement that says you love life, and you appreciate living it, even with diabetes. Make it with family, with friends� or toast the full moon. Make it your own.

This year, 2014, I am very busy with many life challenges and responsibilities � so I won�t be able to lead the crusade as I always do. I won�t be too far from the fray, though. I will be right here, having my scoop, and cheering it on. My friends at The Blue Heel Society have agreed to take on the Social for me� perhaps for a year or so, we�ll see. But they are just as gung-ho about diabetes awareness as I am, so please know this event will keep going. Give them your full support, as I know I will.

This year, while you have your favorite treat� have it will wearing your favorite pair of blues: blue shoes, that is.  

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Life has a funny sense of humor, sometimes... A funny way of testing our wits.

I have a lot of jobs. One of my jobs is for a local church, as their Administrative Assistant. This is a job in which I am transitioning, and their old Administrative Assistant trained me last week, and suggested if I had any questions at all, I could call her. She gives me her business card, and I take it. Later, I'm looking at it, and I find it a bit unusual, as she's labeled herself as a 'Certified Hypnotist and EFT Practitioner,' whatever EFT is. 'Call Your Power Back' it says, under the main header. Under her picture, she claims 'Empowerment and Nutritional Cleansing.' -- Now, this is where I give you guys the disclaimer that I am a skeptic, and I am not fond of new age methods and things. I really like science a lot. I don't believe in cleanses and other kinds of 'fasts' people do to get 'clean' or whatever -- because science doesn't back them up (they can also be dangerous).

I flip the card over -- and what do you know... before and after pictures of people at the worst of their weight gain, and then ripped to no end with muscle, and 'in shape.' I feel the sudden judgmental thoughts going through me -- the sudden comparisons of 'I'm not as good as these people.' Then I'm reminded this person just wants to make a compelling case to get my dollars. I'm reminded that she has confessed to me that she has a lot of health issues herself, and from her appearance is not in what one could term as 'ripped' or in as 'excellent' shape as the people on the back of her business card, and that she's just another human being. I tell myself I have a binging problem, not a weight problem. That I need love, and not a carrot on a stick. I don't need to be Mrs. Olympia 2015.

I will write her numbers down -- and just throw the card away.

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So, recently I was given the chance to try out a ton of Level Life Products and tell you folks what I thought about them. I've been offered other products to try and review before, and I am careful about what I would recommend to anyone: there are many, many, MANY products out there on the market claiming to understand the needs of persons with diabetes, and selling all manner of things, particularly shakes and meal replacement bars. I hate most of them, and tend to not endorse many. They tend to have a lot of sugar, or be a lot higher in carbohydrates than I would personally want. 

Enter Level Life. 

Level Life started out as a company that makes glucose products to help treat hypoglycemia, in more delicious flavors than just chalky orange... So when Level Life contacted me, stating they now had shakes and bars and the like, for me try out, I perked up. You see, Level Life is a company that was founded by a young man who lives with type 1 diabetes. A person with diabetes who couldn't find what he needed out there -- and knew the rest of us probably couldn't, either. 

Finally, a diabetes management product by someone who gets it! 

I am always in the market for the best shake, or meal replacement bar -- one with not a lot of carbs, that won't make me feel sick later... and let me tell you, this is it. I lead a pretty fast paced life these days, since I have two jobs, and often have to squeeze a meal or a snack wherever I can get it. 

These products are fantastic. The bars have around 140 calories, with 14 grams of carbohydrate per bar, and the shakes have around 170 calories, and 10 grams of carbohydrate per shake. They are rich in protein and fiber. I tended to feel satisfied for long stretches, and my blood glucose remained nice and level. Many of us do not want to exceed 140 mg/dL wherever possible, and most shakes and bars can quickly put me at 180 mg/dL. I tested regularly while trying these out, and I feel confident that I can trust Level Life to help me keep my blood glucose goals, and to keep a level lower than 140 most of the time. These products are also gluten free for those of you suffering from any form of gluten intolerance.

I have to admit that I am pretty biased and my favorite flavor is the Rich Caramel Shake. I just grew up with too many vanilla, strawberry and chocolate diet products, or glucose management products... and well. Yuck. lol While ALL of these were actually good tasting compared to other products, I'll stick with Caramel. :-D Thanks. But if you miss strawberry flavored milk, though, you will like the Strawberry Creme shake. It's just yummy!

Level Life has been very generous in their efforts to try to get the word out about their great product, and have given me the opportunity to give away a generous package to one of my lucky readers! You too could win a premier bundle of bars and shakes valued at $60.

To enter, you just have to do three things:

• Follow/subscribe to this blog;
• Like us on Facebook; and
• Leave a comment below about what you're looking for in a meal replacement bar, or what you like about Level Life if you've tried them in the past. 

A winner will be chosen at random and will be announced Saturday, July 12th.  Good luck!!

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I've had type 2 diabetes for nearly 4 � years. Though not a very long period of time, it's still been very challenging...

I've lost weight, gained weight, lost weight; I've low carbed, extremely low carbed, and eaten intuitively; I've exercised myself to death, been a couch potato, and a simple walk around the block lover; I've quit soda, drank only water, and then gotten on diet soda, again... I've had highs and lows, and lows, and highs. I've been proud of myself, and disappointed in myself -- and I've learned just how HARD it is to change myself -- all willpower aside. I've even dealt with some very angry type 1 diabetics and some very unhealthy diabetes forums and communities.

All of these challenges aside, none of these compare to the one big challenge I've had to face while living with type 2 diabetes... keeping my dignity as a patient.

I'm no stranger to the discussion of keeping the patient dignity. I've challenged various prominent diabetes writers on their own biases and deliberate fact twisting, I've written various letters to television programs, to diabetes programs like Take Care of Your Diabetes, to celebrities like Conan O'Brien, and have even hosted an online Diabetes Ice Cream Social event to get people thinking differently (and been skewered for it). My most famous of these discussions on patient dignity, however, happened as an ePatient Scholarship recipient, when I attended Stanford University's Medical School, for their 2012 Medicine X conference. (For that little escapade, I got editorialized by Esther Dyson as someone who was wanting to pass the buck for being fat.) 

And therein lies the rub. We want to find people to punish and blame. We want to skewer people for "giving themselves" type 2 diabetes. 

This is not an abnormal thing. It's actually a part of human nature to want to find vindication for issues -- it's a form of 'negative altruism.' The problem is that the social dialogue that has been crafted in the media, and in part thanks to illness advocacy organizations like the ADA, various medical groups, and those who want to exploit the obesity and diabetes medical communities -- has been centered on discussing obesity and diabetes as though they were a crime against society (i.e., obesity and diabetes are going to bankrupt the economy, destroy the healthcare system, our children, bring governments to their knees, destroy third world countries, bring a second coming of Christ, etc.) So, people with either obesity or type 2 diabetes, are not seen as persons struggling to take ownership of their health issues -- but as people failing to take accountability for a crime against society. "Be accountable for your health," they say. Obesity and diabetes are not seen as personal struggles for personal health ownership -- but as a moral failing of the individual, a crime against society, and as a justification for social outcasting.

This is a HUGE undercurrent in the diabetes dialogue at large! 

It colors the mindsets of many an educator, clinician, registered dietitian, media or TV personality, people trying to sell us goods and services, and of course... persons presenting new technology at a conference like Medicine X. It's a problem. It's a HUGE problem. And when one addresses such a problem, one is portrayed as though one were trying to pass the buck for being obese, or having diabetes. There's a certain self important arrogance about it all... If I point out your moral failing for having 'given yourself diabetes,' then I must be a more moral, and worthier, contributing citizen to the society at large. 

Now, this blog post is not about whether or not one can 'give oneself' diabetes. That would be an entirely new blog post -- and I think I've spoken on that before... My overall view on whether one 'gave oneself' diabetes, however, is that it's IRRELEVANT. Yes, it's irrelevant. Once a person has diabetes, whether or not they 'gave' themselves diabetes is, quite frankly, irrelevant. One can analyze a person's decisions and life style choices till the cows come home... but once that person has AIDS, cancer, diabetes, heart disease, etc... is it now time to start treating them without respect, or dignity? Should we spit on their faces, and socially mock them while at the same time claiming to try to help them? "I'm going to help you, fatty, because you can't help yourself! You have no self control, and you can't stop eating!" 

I think many misunderstand my words here, when I speak of patient dignity. Patient dignity is NOT a patient passing the buck; it is not a patient not taking ownership of their health... Dignity simply means treating someone with a certain basic level of respect for being a human being in the midst of a trying, and challenging situation -- whether of their own doing, or not. We are all human; none of us is above the struggle to make the best choices. Though this is another topic worthy of further exploration in a different blog post, the food choices many of us make day in, and day out, cannot be completely and genuinely labeled as 'mistakes,' for they are the product of our programming as children, as members of some particular society, and as mammals evolved (thanks to natural selection) to prefer more nutritionally dense foods, especially in order to better face periods of famine. While many have had the blessings of genetics, and a healthier food environment overall (familially and culturally), it takes enormous effort to change oneself as an individual, because it is not simply a product of will -- it is a product of reprograming, and reprogramming is HARD. You aren't just fighting your family's bad eating choices, you are also fighting millions of years of evolution! So it is thus, unfair to treat these issues as though they were black and white, and as a people's moral failings, or as a crime against society. Also -- the person with type 2 diabetes is NOT accountable for their health to you -- so get over yourself. Type 2 diabetes has many different triggers (not causes), of which obesity is just one of them, and the others are not quite as uncommon as people want to think. The scientific and peer reviewed studies showing this are there -- but they seldom get public light, because they are NOT media-attention worthy. Sensationalism is simply what sells. 

All of these things aside -- the overall goal of ANY health initiative by any group is to make positive change. But if we want to help a patient community to make positive changes toward a general health improvement, what we want to do is focus on that 'positive' word. Putting the word "skinny" in front of your company's marketing, cracking jokes about a community's obesity or bad eating habits, how they gave themselves diabetes, stereotyping, claiming diabetes can be cured (or blaming people for not curing themselves), turning them into a 'meme' or down talking to them is NOT going to make positive change. Instead, all it will create is an underculture of social pariahs who are not just denied services and tools, but who do not seek the necessary medical attention they need, the tools and education they deserve, or the new lease on life that they could have. In other words, the culture we have NOW.  

If you make it too embarrassing and shameful to have diabetes -- people aren't going to work toward not getting diabetes... People are still going to get diabetes, and they are going to die in silence, from diabetes. 

In the end, the person who'll end up costing more to a society is not the person with diabetes: it is the diabetes bully. 

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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.

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His foot was black and woody; gnarled, like dirt covered ginger. I will never forget the terror in my mother's eyes as she fruitlessly tended to its bandaging, and yelled at him for letting things get to this point. It was a shocking state of affairs. My father was now blind, bedridden, undergoing dialysis, and at the verge of needing his foot amputated.

My old childhood home had changed from whatever it was in my memories and into a hospital. Dad's room was an intensive care unit; my sister's old room was storage for the massive amounts of dialysis fluid boxes he would be needing.

I knew that dad was struggling... but I didn't know the extent. I had been gone from home for far too long, I guess, where at least reality wouldn't have denied me the right to know the truth. My parents, however, were the kind of people that lie by omission -- never telling their youngest daughter whatever might have worried her, or troubled her; never keeping her up to date with issues such as this. It was their way of protecting me... but it was far less protective than the truth. On May 5th, 2003, dad passed away. I only got to spend one last weekend with him the previous March... where he couldn't see me, couldn't go on walks with me, and had the beginning stages of dementia.

For the longest time I was very angry at my dad. To be and feel desperate at the healing of the unhealable is one of the most impotent feelings a loved one can experience. You are overcome with anger at the selfishness of the 'uncompliant' diabetic, not thinking how this would impact family; not thinking of the burdens of family having to be nurses, diaper changers, dialysis providers, and well... at the other end of helplessly watching them rot.

It has taken me years to deal and cope with these feelings; to come to terms with acceptance and forgiveness, and understanding that although complications happen, they are not always due to our choices as people with diabetes. That sometimes, the long ride is just too much -- and the genetic deck is not stacked in our favor.

Except on December 20th, 2013...

A desperate message was posted in a large online community to which I belong by a young man seeking advise about his father's infected wound, how it was not healing, and asking about what all that needed to be done. Someone -- knowing about me and my advocacy -- gave him my name. Then the desperation began anew... this unreasonable feeling of 'how can I save this person's loved one?' What all can I do to turn back the hands of time? I answered as best I could... with all the information I knew.

But information is cold, and stiff. It doesn't change his lack of access to resources, to well educated medical professionals, to the state of the art facilities we enjoy here in the states. It doesn't change that he knew not much about neuropathy, how to care for poor circulation, how to effectively and diligently monitor blood glucose levels, let alone what healthy blood glucose levels were, that Indian food is not exactly diabetic friendly, and that years and years of this status quo would likely not be undone.

Every day, the young man messaged me. "What can be done?" Sometimes, a few times a day. I could see the desperation of his situation -- I could see in my mind's eye, the terror on his face. At some point, I had to say "I am sorry. I am not a medical professional. These are the best guidelines I can give you... and to urge you to seek a wound care specialist." I wish I could have done more. I felt like I was needing to save my own father all over again.

I heard little from the young man, after that... But I had my suspicions. My gut feelings. On December 31st, he wished me a Happy New Year, perhaps in the most somber of ways one could wish it. Just words on a page... not even capitalized. Then by January 5th, he finally mustered the courage to tell me that on the 2nd, his father passed away. And it all came back around, home for me...

I mustered an "I'm so sorry,"  in the best way that I knew how, never once telling him about my own pain. My own loss. "It's fine," he replied.

Perhaps not so, today... and that's just fine, as well.

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