Sunday, May 31, 2015

Hope.

I’ve been away.

The Diabetic Life has laid dormant inside of me while I’ve been swept up in other things.

I don’t put the hours in worrying anymore, and I certainly don’t work overtime to make sure basals are succinctly dialed in like I used to.

There are only so many minutes in a day, and I have the immediate need to graduate early so I can move across the country, and get married, and start my career. Other things have taken precedence, so I’ve reverted to inevidable "Diabetes autopilot." Even though Diabetes is still a very important part of our lives, it isn’t the most important part of our lives, and it certainly isn’t where it needs to be on the priority list.

Basically, it has been: They are alive at the end of the day. It’s a win. 

We are surviving, not thriving.

Tonight though…

Tonight.

Tonight I attended the JDRF Hope Gala in San Francisco at the generous invitation of special friends. Listening to words like “hope” and “cure” and “breakthrough” and promises for change stirred up the complacent advocacy particles that have settled deep in my soul. The juices began to flow, and the floodgates opened.

I am a D Mom.

My kids need a cure.

I never allowed myself to believe in one fully. Mostly because I believe it's important to be content with the cards we are dealt now.  But tonight the man that is the head of the encapsulation team looked me personally in the eye and said, “It’s coming. For your children. It will happen.” And when he showed me cells on his cell phone bursting with the ability to produce insulin, it was like I was witnessing the impossible…and then…believing in it.

And as the bids came around the room, one in particular for $100,000 (yes I hugged their neck,) the gratitude ran so deep it was hard to contain it all inside my frame. Because even if there never comes a cure, these people were there tonight working for it anyway. Working hard on behalf of MY boys, for a future that I wasn’t brave enough to envision, but they are stubborn enough to fight for in spite of my complacency. They fearlessly move forward raising money to fund research for change, and many of them will until the day they die, or until the cure does come. It was humbling to witness such generosity, some people whom have no familial relation to diabetes.

My heart runneth over.

Tonight, driving home from the gala, I made the decision to allow myself to hope, and not let myself, or my boys, settle for a future of “same ol’ same ol’”

Now here it is, almost 2 am and I find myself coercing fruit snacks into my sleeping 11 year old's mouth. My boys need a cure. If there are people in the world willing to work towards that end, I will be honored to stand next to them and dream with them. Hope with them. Lead with them. Fight with them.

It was an honor just to be in the same room with them tonight.

My name is Meri Schuhmacher.

And I’m all in.


Sunday, May 17, 2015

You're a Fat F@#! and You Give Diabetes a Bad Name!

When I was diagnosed with type 2 diabetes, it took me some time to become aware of all the various resources that were out there for me. There were various mainstream informational websites, and a few personal blogs. I didn't even have an inkling that there were exclusive forums for people with diabetes, until I found a reference for one in a blog.

So I joined the forum, excited to meet other people and see what it was all about. It opened my world to a whole new level of knowledge I had not been exposed to through the mainstream informational websites, and it made me consider so many questions related to day to day living with diabetes. At the time, I was struggling with other life challenges, as well: I had been struggling with underemployment, lack of medical coverage, and a lack of food, so the forum provided for me a place to come, get some encouragement, and escape reality for a little while.

While I made many valuable friendships, and met folks who helped me realize that I'm not alone in my path with diabetes, I also met a lot of jaded and hurtful individuals. And I was very much not prepared for that. Sure -- there are always trolls and mean persons on every corner of the internet, but this was different: these were people who exclusively hated me and held me in contempt for having the 'wrong' type of diabetes. And that was something I could not understand.

Now, I am well aware that I may not have the most easy going personality -- but this problem was beyond my having ever joined this forum. A simple search through their archives, and one could find thread upon thread of vitriolic, incredibly detestable hate-filled fests against persons with type 2 diabetes. On top of that, administration seemed to care little about monitoring this type of bullying, and called it "constructive dialogues that needed to be had." It was frankly, quite off-putting. The forum quickly became detrimental to my health, contributing to feelings of shame, self loathing, and depression. I felt myself addicted to it, as someone who's addicted to the person who has become their abuser. I was glad when I was finally banned -- a woman took to insulting me after an innocent reply to a post, and when I replied in self-defense mode, she conveniently deleted hers... It was hurtful, and I felt very much betrayed. I still do. But it was for the best. There were people who only pretended to be my friend, and after I was gone, completely stopped speaking to me. Just like junior high. The whole thing was gross.

It wasn't all a loss, however. Some of the people who I had friended decided to find me and friend me on other social media outlets. They missed my insights and my writing, and encouraged me to blog; they were instrumental in me even starting this blog. Many of them are still my friends till this day. I value those friendships very much, and my life is richer for having them.

But... after leaving that forum, I found that this terrible hatred, and vitriolic scene was not just a problem exclusive to them, but instead it was a part of a greater online diabetes culture. No matter what group, page, or discussion you joined, there would always be discussion about persons with type 2 diabetes being to blame, being fat and gross, having a 'different disease that is not mine and needs to be renamed so we're not associated with them because they gave it to themselves,' not having 'real diabetes,' not being important or deadly, and not to be considered as allies, but as people who have ruined things for 'the rest of us.'

Frankly... I've never been hated so much by someone for just existing. Not even as a Latina woman, in a predominantly Caucasian state; not even as an obese woman by persons without diabetes!

I quickly became very resentful of these people. I sought out many arguments purposefully, and tried to argue it out with as many of these haters as I could. In my mind, I saw them as immoral, awful people, who needed to be put in their place. I saw the culture of rampant discrimination, bullying and persecution, and I just had to get on my little crusade to fix it. I sought to try to force people to see that type 2 diabetes was very much misunderstood, and that they needed to see this for themselves as much as their own type of diabetes was misunderstood. I argued, and I got on my soapbox, and I ran myself ragged.

Some folks were on my side and argued for me, and even wrote extensive blog posts... and some other folks were not. Some other folks were more lukewarm: they could sympathize with me, but they still wanted the 'comfort' of relating to others about how much they resented my own type. I felt like these folks wanted to eliminate us, like a kind of ethnic cleansing: obliterate us from existence, so they could get justice served for their own misfortunes. We are 'the punching bag' for their child, or their spouse, or their whoever having gotten their type of diabetes.

It's become very challenging for me to not reserve a well of pure hatred for many, or most of these people. But slowly, and with time, I've come away to a different place when it comes to the conversation... I can't have anything but sympathy for these folks.

You see, the feelings, hatred and vitriol -- though hurled at me and others living with type 2 diabetes -- have absolutely NOTHING  to do with us... and everything to do with those who hurl them. They do not say a thing about us; they simply speak of unmet needs, of emotional trauma, of personal agony and challenge, of isolation and lack of recognition.

None of this has anything to do with me. It has everything to do with:

  • The stress of living with a deadly chronic condition, and a lack of acknowledgement of this reality by friends, relatives, the media, and the medical community;
  • The frustration of living in a world rampant with ignorance about diabetes in general, but especially about any other type that isn't type 2;
  • The lack of psycho-social support and mental health available for people living with diabetes;
  • The often inevitable feelings of seeing oneself through the lens of a victim's narrative because it's really hard to rationalize to ourselves the WHY we (or our loved one) got such a sucky hand in life (a subject that could well fill another blog post, on its own);
  • The feelings of a need to 'make things right,' and avenge the lot in life we got (or our loved ones) by attacking others that society has told us 'gave it to themselves,' so that we can feel better that we were 'innocent' (as if those others were guilty, somehow) ;
  • The desperation of not being able to find healing for ourselves, or for our loved ones... often, the desperation of complications, or a lack of research and a cure;
  • Simply... the pent up agony and anxiety at not being recognized on almost any outlet, ever... even as rarer conditions get at least some moments in the limelight.
I have distanced myself a lot from many of these conversations, and forums. I went off to make my own diabetes support group where this type of vitriolic atmosphere is simply not tolerated. Where a culture of being one another's advocate is encouraged -- because we're all we've got. Outsiders are seldom interested in any diabetes, of any type. Period. It's up to us to educate ourselves as much as we pretend to educate others. 

But just because I've surrounded myself with love, and support -- and rewired the conversation -- doesn't mean that the hate fest doesn't live on outside of my bubble. Oh, it does.

So a couple of nights ago, when I was misguidedly arguing with a friend over an idiotic political meme (as you do) and they lashed out at me, declaring that I was 'a fat fuck, who gave diabetes a bad name,' I didn't even blink. They proceeded to unfriend me, and thus ended a long friendship... But I knew the insult had nothing to do with me. I knew the person had waited long and hard to find an apt moment to hurl the insult at any person with type 2, and therefore, stab life right in the groin. I knew the person had been struggling long and hard with some pretty scary complications from diabetes... and needed something or someone out there, to pay for it; to be their punching bag. I knew they were writing their own victim's narrative. 

Had they done all the right things, some might ask? I don't know. Does it matter? Do they 'deserve' their pain, somehow, if they had not? I think we've ALL done all the right things, and all the wrong things at one point, or another. At the end of the day, frankly, diabetes doesn't care whether you 'gave it to yourself,' or not. It has little empathy. In fact, it has none.

I simply don't get angry anymore. Instead, I love these people, and I let go.

Once one understands the mechanics of what's at play, it's easy to let go and forgive. It has nothing to do with me, after all, and it never has. I respect the walk of my fellow friend, though it's not my own. It's not my duty to make these people feel better about their own type of diabetes by letting them belittle me... no. 

But I understand, and thus I let go... For in unfortunate choices, or through hatred, and in pain, people are still human. They still deserve some dignity and some humanity. So you let people go, and you hope they find some healing. You hope their lashing out at you helped them, somehow. You hope they find their peace.

You let go of all the folks that do not build you up... so they can find whatever it is might build them up. We're all (though sometimes reluctantly so) in this together... So, off you go. 

Friday, May 8, 2015

What are D-Moms made of?


We are a complicated concoction.  

D Moms are made of Glue:  We hold the entire family unit together.   Our children's challenges stick resolutely to us as we work to find solutions and wash away the unpleasant sticky residue of diabetes.


D Moms are made of Fire:  The bad blood sugar day our children had yesterday?  We burn it away into ash and begin the day anew.  Every day is the rebirth of new numbers.  The old worries are burned away and in its wake come new saplings of hope.


D Moms are made of Ice:  We can numb the pain...the sadness...with our love, our bear hugs and our empathy.


D Moms are made of owls:  At 2am we can see the smallest speck of blood in the darkness of our child's bedroom.   We are wise enough to make life saving decisions in the dead of night.  We bring food and drink to our child's cozy bedside nest to keep them safe.


D Moms are made of wind:  We are invisible as we check a blood sugar while our child watches their favorite show.  Other than the breeze from our departure, our presence is undetectable. 


D Moms are made of crystal balls:  You ate that plate before I could see it?  70 carbs.


D Moms are made of dark chocolate:  We may have a bit of bitterness buried deep inside us, but the notes of smooth sweetness comes through more than anything else.  We are pretty comforting to have around.


D Moms are made of Cheetah: We are fast.  23 blood sugar?  We are up and to the snack cabinet before you can even blink.


D Moms are made of Diamonds: We shine through the hardest times.  We can stand insurmountable pressure.  That twinkle in our eyes when we look at you?  Nuff said.


D Moms are made of Bologna:  You know when our children are high with large ketones and we say, "No worries!"  We are really good at being calm and making you think that everything is ok, even when our insides look like an active pinball game.


D Moms are made of Bob the Builder:  Can we fix it?  YES WE CAN!


D Moms are made of encyclopedias:  Information?  We have retained it.  We are the go-to information source for our children's health.  We are the experts.  Yes...you can site that.


D Moms are made of butter:  We melt easily.  Give us those eyes and yeah...you can have that cupcake.


D Moms are made of steel:  We can be bent, dinged and manipulated...but we will not break.  We support the skyscraping circumstances with ease.  The world on our shoulders?  We can hold that.


D Moms are made of tears:  It is our breath of life.  Releasing the tears is the only way to keep the delicate balance within our complicated eco system of ingredients. 


D Moms are made of crock pots:  In the morning we cook up life by throwing together love, kindness, routine, determination and loyalty, and then letting it simmer all day long into a feast for our family by day's end.


D Moms are made of swords:  We live to conquer.  We were built to defeat what stands in our way.  Don't mess with a D Mom on a mission.  We will cut you.


D Moms are made of silver:  We may look frazzled and tarnished sometimes, but give us some TLC and we will shine so bright you'll need sun glasses to take us in.


Sure...we are complicated.  How can one exist by being fire and ice?  Butter and steel?  


It is a delicate balance...one not everyone can negotiate.  


That is why we were given this calling.


We are D Moms.


It is our job to make it work.


Happy Mothers Day to my fellow D-Moms-in-arms!

Wednesday, April 22, 2015

I always want to know.


Last week I had the opportunity to volunteer at a community event taking blood pressures of the interested passerbys. There were those that volunteered readily to have their blood pressure taken, those that were bullied into it by their spouses or loved ones, and then those who simply said, “I don’t want to know.”

To them I smiled and said, “Knowledge is power! Don’t be afraid of the numbers, they are exactly what you need to give yourself peace of mind, or design a customized care plan with your doctor.”

(Psst…. Thanks, Diabetes.)

A lot of the time, my pleas worked.

I had a few gentlemen with blood pressures so high I wondered how they weren’t having a heart attack right then and there. They gave various excuses for the high numbers, and tried to wave each number aside as a fluke.

For each, I wrote the number on a piece of paper and said, “This number all by itself isn’t harmful.  It’s the ignoring the number that can be harmful. I don’t think it would hurt to talk to your doctor, or even go into a CVS, and recheck your blood pressure when you feel more relaxed to follow up on this number. High blood pressure is fixable, but only if you act on it.”

(Psst…. Thanks, Diabetes.)

Even though I’ve been taught in class that these men must surely be facing eminent death before they hit the parking garage, my experience with blood sugars has taught me that the alarmist technique is never the best one. A 410 blood sugar to any health professional other than my endocrinologist must seem like a ticking time bomb, but in the real world, I know better.

If I can teach anything to my teenagers, --and trust me, I don’t have high expectations on this front-- but if I could teach them anything, it would be that exact same principle: A high number isn’t harmful. Ignoring the high number is.

Tonight, two of my boys forgot to bolus for their dinners. (I don’t’ know if forgot was the right word, because I asked them to, but regardless,) I have two boys that went to bed an hour ago with 400 blood sugars, which trust me, I know isn’t ideal…

But…

They checked, and they fixed it. That is what’s important. Part of me hates that the numbers don’t faze them, and another part of me revels in the fact that they do test, and they can fix it and forget it, without the guilt and the anger attached to it. There’s a fine line to it all…I don’t know where we land, or how I should really feel, but for now I’ll take into account that they are trying, and that’s satisfying.

I don’t ever want them to be afraid of testing.

When they are going to do something every day/all day, anger and guilt need to be left out of it. I have discussions with them about their body systems, and how high blood sugars aren’t ideal and can cause lasting issues in the future. Just like anything in life, decisions you make now are always more far reaching than we think.  "Consequences to our choices" is always a hot topic in this house. They get it, but they also get that attaching emotion to a number is fruitless.

Because no matter what the number, it is a blessing. Knowing what to do next is a priceless gift that I never take for granted.

Knowledge is power. Saying, “I don’t want to know” usually means there is a problem that one is ignoring.

I always want to know.

Even if it is 400mg/dl.


Sunday, March 29, 2015

Full Circle

I had never known more anguish, never known more sadness, and never known more loneliness than the day I lost Ryan.  I remember those early days clearly, although I hesitate to bring myself there fully. It’s an indescribable feeling.  Helplessness and nausea are the only words that come to mind. In the moment all I could do was concentrate on lifting my foot and then positioning it in front of me. One feeble footstep at a time. One minute at a time. Everything baby steps. Everything frightening.

The process of losing a beloved spouse is a horrifying one, and one I only bring up because a dear friend lost her husband last week. Our correspondence brings me back to those helpless, nauseous moments. I continue only to glance at the memories though; I won’t completely succumb to them.

Looking back at myself just a couple years ago, and then seeing me now, I wonder how I got here in one piece. It was a process. Surviving wasn’t achieved by anything special inside of me. It was my ability to endure that was my best quality; getting up in the morning my best talent. I remember vomiting every morning from anxiety and then pulling myself together enough to leave my bedroom to be a mother to the boys. It was their faces that gave me purpose, and ultimately got me through the worst of it.

And now here I am, a few years later, engaged to another man, and embarking on a new adventure that should have me terrified, but instead brings me only waves of peace and joy.

I suppose I just need to publically acknowledge the miracle. How I have been blessed with two men who love me fully, for who I am, warts and all…how?

Miracle. It can only be that.

My fiancĂ© thinks he was sent to care for me, but I feel like I was sent to care for him. We have both been through hell, it’s only by the miracle that we’re able to account for the peace we feel when we are together. He is my rest. When I am with him my worries disappear and I’m able to bask in a happy glow of sureness.

Life throws curveballs. Losing Ryan was a brutal one. Finding Doug was a brilliantly surprising one.

I guess Forrest Gump was right.

But my heart tugs tonight for my dear friend, Tara. The ache. I’ll never forget the ache.

Tara is a fellow D Mama. Dov, her husband, had many super powers, one being a badass D Dad.  His long battle with colon cancer at such a young age seems so tragic, but Dov made it anything but that. He made it magic. It sounds ridiculous, but he did…and I’m forever in his debt for showing me that magic lies within our own selves. No one, and no disease, can take that magic away from us.  It’s a lesson that can change lives. Ponder it for yourself, I beg of you.

If you would like to help Tara and her children, send her some love via this link:


There is so much worry on Tara’s plate right now. If we can take away some of that weight, I’m sure we’ll feel some of that ol’ Dov magic start to stir inside of us. I ask you, which one of us couldn’t use a little more magic in their life?

God Speed, Dov Siporin.

You are loved.

And Tara, I hope through all of this you will find as I did, that same nagging feeling in your heart that says, yes, everything…some day…some way…is going to be ok.


CFD.

Saturday, March 21, 2015

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.

 
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