fashion clothes

First of all, let me just say thank you from the bottom of my heart for the response to the original post I wrote earlier this week about addiction.

I wanted to clear up a few things, answer a few questions and address a few issues in the wake of it. I wrote it initially because the words just needed to get out of my head. I've told quite a few people that I really don't even feel like I wrote it, I was just the person attached to the fingers that typed it out. It came from my soul.

The difficulty in writing something like this is that I wrote it for my own reasons, which are related to my own personal experiences with addiction in many different forms. I never wrote it thinking for even one second that it would go viral. It was not done to capitalize on the moment, it was not even a celebration of PSH as an actor, though I will miss his contributions to the industry. It was a response to the way people reacted. The assumptions made about him. The assumptions made not just about him, but about everyone out there struggling the same way he did.

It wasn't about him at all, really. It was about the addicts I have known and loved. It was about the people I have known, the struggles I have witnessed. The demons in my own head.

His death just forced all that to the surface for me.


There are a few things that I wanted to clarify, that I probably should have written more in depth about at the time but didn't either because I didn't think about it at the time, or I did and chose to try and condense my words.

The greatest of which is the issue of what causes addiction, something we may not ever have clear and convincing scientific evidence of. We see what we see, though. We observe what we observe. I did not state in the post that every case of addiction has mental illness as a precursor, though I believe many of them do. There will certainly be people who don't relate to it at all. It's not intended to be all-inclusive, nor would I ever presume that it could be.

There most certainly appears to be an element of genetics involved when it comes to addiction. Some people are just more inclined to be drawn toward drugs, alcohol, food, whatever it is. Some families seem to have clusters of addiction. Whether it is an actual issue of genes or just the force of habits and learned behaviors from a lifetime of living with and around other addicts, I can't say. I just know that some people have a predisposition to it.

I know this because I am one of them.

I walk the line.

I have been forthcoming about my personal issues in the past.

There are people who may not have that predisposition, who can use drugs socially, who can drink without hesitation, and it never causes a problem. For some of them, though, these people without the predisposition, they may find themselves addicted anyway simply because the item they use creates its own physical addiction.

Nicotine, heroin and cocaine are the ones that come to mind immediately. These drugs are inherently addictive and create dependence in people who might otherwise be able to fight it off, purely because of the chemical compounds involved and their effect on the body.

Along with all that, there is the underlying issue quite often of mental illness. I say this only because it has been the case in every single addict I have ever known, most commonly depression. In many cases, because of the stigma about mental illness in general, people are resistant to believe they have a problem, resistant to seek help, and in turn seek out ways to self medicate...which can lead them down the path of addiction.

Some of the comments left indicate that people misread my words. I never intended for anything in the post to be an absolution of responsibility on the part of the addict. Quite the opposite, in fact. Attempting to understand why people become addicts and why it is so hard for them to get clean doesn't equal helplessness at all. They are without a doubt the most essential piece of the puzzle. Without a desire to get better, without the determination to get up and fight the fight every single day, no amount of resources, no amount of support will ever make a difference.

Those of us who have been there understand that. Those of you out there who haven't been there should consider yourselves lucky. Honestly.

Do addicts choose to use? Yes, of course they do, at least initially. Once they are in it, though, the issue of choice isn't clear cut anymore, it's not cut and dried, it's not black and white. Some drugs mess with the messages in your head. Some drugs force your body to get more. It's not as simple as just deciding to stop, particularly for people with severe addictions that can only quit safely with the help of detox.

The physical aspect of addiction is only one piece, and most would argue, one of the most inconsequential, at least in the long run. The reason people relapse is precisely because addiction isn't just physical. It's bigger than that. It's more complicated than that.

Our mental health system isn't equipped to help addicts. Even where there are services available, the resources are usually lacking to help pay for it. Not all insurance covers rehab, for those people who even have insurance. One of the lesser discussed aspects of the Affordable Care Act is that all plans sold on the exchanges are required to include coverage for substance abuse.

This is huge, and might finally be a step in the right direction.

We need to do a better job for addicts in this country. We need to do a better job for all mental health conditions in general. We need to have a better understanding of the co-morbidity often present between them. We need to stop believing that drug use is simply a criminal issue.

Mostly, though, we need to remember what it's like to care about people.

We need empathy and compassion.

They, the addicts, need it maybe more than anyone else does.

Does that mean that I am claiming you should always be there, be subjected to abuse, throw money at treatment centers for people who refuse to try? Of course not. In all of this, you have to understand that all the help in the world won't help someone who doesn't want it, someone who isn't ready, someone who won't get up and fight every day.

You can't love them enough to fix them.

You can't love them enough to keep them clean.

You can't love them enough to make it all better unless they want it to be better.

It's a painful realization, one that I've had to come to before. It sucks backwards and forwards. You can only do what you can do until you can't do it anymore. Then you have to do what you have to do to protect yourself.

No one will fault you for that if they understand what it is like. Those who would can't possibly know.

Another of the topics I wanted to clarify a little here is the subject of religion, which is something mentioned quite often in the comments. I didn't talk about it because I am not a religious person. I am spiritual, but not within the confines of a religion per se. I have known addicts to get clean even without a belief in God. I have known people with all the faith in the world who didn't make it. My opinion is a simple one - whatever works for you, cling to it, but don't think that it will necessarily work for someone else. Each person has a different path, a different inspiration, a different reason.

I honor them all. I respect them all.

I think that is all the issues I wanted to clear up. I think. I'm probably missing something, but I can count on you all to let me know.

Again, thank you for sharing this important message.

Peace and strength to you all.

Philip Seymour Hoffman died yesterday. He was found with a needle still wedged into his arm, heroin believed to be the culprit.


When I heard of his passing yesterday, it hit me in the gut a little bit. Not because I know him, not because I know his family members or friends. Not, much to the dismay of what some may believe, because he was an award winning actor.

It hit me because he isn't the only face of addiction, he is just the most recent one. He's just the face that most people recognize, the one that we were familiar with, the one that we came to love through his work on the screen.

Whenever someone famous dies, there seems to be this immediate attempt by far too many people to make their life and death insignificant, as though the death of a celebrity somehow negates the death of all the other people who died on that given day. People attempt to place more value on the lives of some people, less on others, claiming that the celebration of the death of a celebrity is a misplaced outlaying of our efforts. I argue the opposite, obviously, particularly in situations like this one where there is so much opportunity for us to learn about addiction, about mental illness, about why lives end this tragic way.

The opportunity is there, without question. The issue is whether we, as a society choose to seize it, or whether we chalk this loss up to drug use and wave it off indifferently as another selfish life wasted.

It seems we do the latter.

Plenty of opportunities have been presented to us in the past, of lives abruptly ended this way. Of people who happen to be famous, but also struggle with the same demons that many of us ordinary folks do, meeting sudden death in this way.

Philip became addicted to heroin after struggling with abusing prescription pain medications, an all too familiar and increasingly common path to this addiction. This is not the addiction we want to think it is, the sordid one that happens in alleys, nor is it one reserved only for those in positions of privilege. Heroin doesn't discriminate. Its use is up 75% in the past few years, and the demographics of the users have shifted. 

It's easier to think that drug addiction happens to other people, to them, over there. Reality tells us that it happens far more often than we want to believe. It's a false sense of security.

Chances are that someone you know is addicted to drugs right now, you just may not realize it.

Or you do know, but you hide their addiction because of the social stigma. 

Or you don't hide it, but you shame them instead. 

Or you don't shame them, but you slowly phase them out of your life because you don't want to be around them anymore or because you just can't do it anymore. 

Or you keep them around, but talk about them behind their backs, discuss how sad it is that they refuse to get help, vow to be better than they are.

Or they do try to get help and sometimes they get better for a while. 

Or they relapse and die just like he did yesterday.

The trouble with drug addiction is that it really isn't about the drugs, no matter how much most people seem to believe that. Drug addiction is a means to an end. It begins usually as a way to try something new, to try and get high, to try and transport yourself somewhere else, to try and just feel better for a minute.

Most drug use is self medication for the things that people either can't or won't cope with in real life. The root of most of all that? Mental health conditions, the huge piece of this issue that we find ourselves ignoring all too often every time drugs are involved.

Nancy Reagan taught us all that drugs are bad. D.A.R.E. programs taught us that users are criminals, they are bad people. No one ever bothered to tell us that the vast majority of them were in need of help from a mental health system that largely doesn't exist.

And you know what happened?

People believed them. I can't even begin to tell you all the things I saw flying through my newsfeed yesterday in the wake of his death. Proclamations that he was selfish, that he was a waste, that he should have been happy because he was rich and famous. People who decreed from the mountaintops that if he would have just tried harder, he would have been better. That it's his fault that he died.

In reality, he struggled with depression most of his life. He got clean. He was recently in rehab.

Addicts don't want to be addicts.

Addicts don't want to die.

Addicts don't want to throw their lives away.

Addicts don't want their children to grow up without parents.

They just want to feel better. They just want to feel normal. They just want to stop feeling everything else for a little while.

Addicts are people, just like you and me.

Addicts come in all forms, dependent on many different things, drugs just being one version of dependence.

The problem is that our system is limited, laboring under the illusion that drug addiction is a criminal issue, a medical issue on the fringes that can be fixed with proper rehab. That all ignores the fact that drugs aren't the problem...what led that person to drugs in the first place is the problem. The drugs are just a means to an end.

Rehab doesn't fix addicts. It primarily treats the physical symptoms of withdrawal.

Prison doesn't fix addicts. It just puts them in a cage for a while.

Even death doesn't fix addicts. It just leaves the people who love them here, forever wondering how different things might have been.

The only way to really deal with addiction is one that is multi-faceted, one that makes us uncomfortable. It is messy and complicated and takes a lifetime of effort. It sometimes involves relapses and second chances and third chances. It involves support, sometimes sponsors. It involves therapy and counseling until whatever the root cause is has been revealed and addressed. It involves consideration of not just the physical withdrawal, but the emotional withdrawal, the social withdrawal, the psychological withdrawal. It requires a mental health system with adequate resources, which clearly doesn't exist. It requires us to do better. It requires support instead of judgement.

And sometimes, even when all those things exist, it fails. It fails because addiction can take people and swallow them whole. It can rob them of everything they value, everyone they love. It can strip them of everything they care about, rob them of reason and logic. It can convince them that they aren't worthy, that they have failed not just themselves, but everyone else. It tells them that they are broken and irreparable. Then it shoves them back down and does it again.

Our society says it failed because they didn't try hard enough, because they were selfish, because they were stupid.

How exactly is saying things like this going to help anyone?

The short answer - it isn't. It just allows us to believe that if we try hard enough, if we care about other people enough, if we are smart enough, we can avoid addiction. Our false sense of security hurts those who need help the most.

Never mind the damage done to the people they leave behind.

To those who claim Philip's death isn't tragic, I ask you to think about his children. I'm sure they would disagree with you.

Until you've been there, you can't know what it is like.

Until you've watched someone you love try and claw their way out only to be dragged back in again, you can't know what it is like.

Until you've seen someone throw everything away just to feel better for a moment, you can't know what it is like.

Until you've dealt with someone desperately in need of help who turned to self medicating instead, you can't know what it is like.

Until you've had to tease out where the line between believing in someone and enabling them is, you can't know what it is like.

Until you've had to make choices no one should ever have to make, you can't know what it is like.

Until you've done all you can to help someone who doesn't want it, you can't know what it is like.

We all have our demons. We all have our issues.

Many of us are closer to being addicts than we would ever admit out loud.

Some of us know how easy it would be to turn.

Some of us are addicts already.

Some of us already walk the line.

January is Cervical Cancer Awareness Month.

Cervical cancer used to be the leading cause of cancer death in women. Thanks to better screening, detection and treatment, survival rates have increased dramatically. Each year in the US, about 12,000 women are diagnosed with cervical cancer, and approximately 4,000 die from it. Most cases of cervical cancer are caused by the HPV virus, a disease most frequently spread through sexual contact.

A while back now, my friend Emily confided something in me. She told me that she had cervical cancer and then waved her hand around dismissively about how she had to have surgery again but it was no big deal, right?

NBD. Uh huh.

I knew it was a big deal then, but I sensed that what she needed at that moment was a really inappropriate joke, so I said something naughty about her lady bits and we laughed. Turns out that I was right. It's been a long few years filled with a roller coaster of emotions for her. I asked if she would be willing to share her story here and she was kind enough to oblige.

I must warn you, though, she is my friend. So she's totally inappropriate. And candid. And honest. And real.

This is her story.

~~~~~~~~~~

While I was sitting in Starbucks waiting for her to come in, I realized that I hadn't written down a list of questions to ask her. I figured that it wouldn't much matter since the two of us rarely have a hard time finding things to talk about, and this time, we had a specific topic.

A serious one.

We usually tell each other fart jokes.

No, I'm not kidding.

She sat down and I could tell she was nervous. This isn't a story that she has told many people, not even really to me, not in much detail anyway. I told her that I was completely unprepared and didn't write any questions down. She winked and whispered, my vagina still works. Everyone always wants to know about that!

Tension broken.

Before we got to the story, she promised herself she wasn't going to cry, immediately teared up, then told me why she hadn't really told anyone. It's a reason I completely understand.

She didn't tell anyone because she was afraid that if she said the words out loud that it would be real. It was easier to pretend like it wasn't happening when other people were none the wiser. If other people knew, they would ask how she was. She didn't know how she was and she didn't even want to think about it. She didn't lose her hair. She didn't have to go through chemo and radiation. She just had to have surgery, so she felt like it wasn't even a real cancer anyway. It was all weird and she didn't want it to be weirder than it already was.

It was easier to tough it out alone than to face reality and say the words out loud.

Em has three children, all boys. Her middle son is one of Mini-me's best friends in the whole wide world. They are just like peas and carrots.

None of their deliveries were simple or easy. She went septic after the first and needed an emergency hysterectomy immediately after the last was born through Cesarean section.

She has never really even processed the loss of her future fertility and admitted as much. This whole experience is forcing her to do it now. The finality of it all sinking in. At the time of the hysterectomy, the gynecologist removed her uterus and about half of her cervix, needing to leave part of it because of swelling.

A year and a half later, she needed to have the remaining portion of her cervix cauterized for bleeding.

She was always on top of her annual checkups and Pap smears. She had never had a single abnormal Pap.

In the fall of 2012, she knew she had to go in to the doctor to have her check up before her insurance stopped. She was in the middle of divorcing her husband and wanted to make everything was taken care of while she was still covered. Had the Pap on a Friday, got a phone call on the next Tuesday. Never a good sign. There was some concern.

She needed a biopsy.

It was cancer.

Confused, she asked him how could this happen? I've been married forever.

The answer? HPV can lie dormant for years, decades even, then show up and cause trouble without warning.

In some ways, the impending divorce saved her life.

Her doctor sat her down and talked about options. It was early, it hadn't spread. Instead of doing an invasive surgery, he could try and remove what was left of her cervix in an in-office procedure. As long as the margins were good, this might be all that was necessary. She agreed, had the procedure, almost all of the cervix was taken.

Of course she sent me a text with a picture of the pieces of her cervix in a jar.

Of course.


Because that is the kind of relationship we have.

The margins were clear, everything looked good. She was relieved and ready to move on with this scary episode behind her.

Three months later, she had to go in for a check up. She was supposed to be declared cancer-free. She wasn't.

The cancer was back and she was out of options. She had to have the full surgery.

She's now had four surgeries in four years.

This time, both fallopian tubes, one ovary and what was left of her cervix were removed. The procedure was slightly complicated by the fact that her cervix had fused to her bladder. The healing was rougher this time around. A few weeks later, I sat by the pool with her and told her really bad jokes. But not the kind that make you laugh too much because that hurts.

Some of the jokes just presented themselves through no fault of my own. And that's totally an inside thing.

Just after the surgery, she used the C word for the first time with her boys. They'd known that Mom was sick before, that sometimes she didn't feel good, but this was the first time that they were told what was actually going on.

The first time that Mom and cancer were put in the same sentence.

Trying to explain why she was emotionally all over the place, she told them that when women have hormone changes, like when they have a baby, their bodies can't always manage the changes well. Since one of her ovaries was taken out and her body wasn't really sure what was going on with the sudden hormone drop, she was crying a lot for no reason.

Her middle son went to Sunday School at church the next day and said this:


She hadn't told hardly anyone at church anything, and all of a sudden had a lot of explaining to do.

As word began to spread, months after she had actually been diagnosed, she realized in a hurry that having other people know wasn't all that helpful. She still didn't want to talk about it.

There was more though, this other part of it, the fact that this is the type of cancer that carries a stigma with it. People make assumptions about women with cervical cancer, none of which ever applied to her. She was married, monogamous and had been religious about checkups. This wasn't supposed to happen to her.

But it did.

We talked about this aspect of it for a while, because we both feel like all the education towards vaccination against certain strains of HPV has actually attached more of a stigma to cervical cancer than there ever was in the past.

It isn't just a cancer that women get from a virus that most people carry as adults anymore, it's a cancer that women who have sex get from partners who are infected. It's an STD gone bad now.

Cervical cancer has always been most commonly caused by HPV. People have always had HPV, men and women. It's just that now everyone talks about it. Which is good in some ways, certainly, but bad in others because it makes this cancer more than just a disease...it makes it something that, to some degree, is shamed.

Think about it.

It's impossible to have any conversation about the vaccines without it turning into some religious debate about condoning promiscuity and teen sex. Married, monogamous women can still get HPV, can still get cancer, can still die. Period.

Emily is proof of it.

When asked what she wants people to know, aside from that truth, she said that just because you are married or monogamous does not mean that you should feel comfortable waiting longer between Pap smears. She had never had an abnormal result, and had been dutiful about annual exams, before her diagnosis.

Next month, she goes back again. For another checkup.

She's been to the checkup where everything was supposed to be fine and it wasn't. She's scared.

That's the thing about cancer that you learn the hard way. Once you have been there, you live in fear of it coming back. It changes everything.

If you want moral support, Em, I'll go with ya. I can't imagine what the doc would do with both of us there though. That's got to be too much inappropriateness for such a tiny room.

Thank you for being brave enough to share your story.

Love you.

Watching Dick Clark's Rockin' Eve on television a few days ago, I wondered silently in my head why anyone would take anything that Jenny McCarthy says seriously.

Then I remembered that countless people have hinged major parenting decisions on her words.

Then I remembered that she penned not one, but three books about autism. In those books, she advocated vigorously for the connection, dismissed by several scientific studies, between vaccines and autism. She didn't just imply that her child developed the condition immediately after being vaccinated, she basically stood on a soapbox for years and screamed it, then told people that it can be cured.

When her son was diagnosed in 2005, she made the prevention and treatment of autism her main focus in life. She poured all her energy into it, much like most parents facing the condition.

What she had that most other parents don't was pre-existing fame. She used it, oh did she use it. She used it to wax poetic about possible causes and latched quickly onto the idea that vaccines had caused his condition, then she took that and ran with it. She was on television programs, she was interviewed for magazines, she wrote books, she quickly became the poster child of the anti-vaccine movement among the parents of our generation. She started a website for parents, soliciting donations even.

In 2010, when her son magically recovered from the condition(1), it was fairly quickly hypothesized in a Time article she was interviewed for that he actually had a condition known as Landau-Kleffner syndrome which causes speech impairment and can be associated with long term neurological damage. She knew then that he may never have been autistic at all, but held fast to the idea that he was and that she had cured him. She started to backpedal on her vigorous crusade against vaccines, and started to say that they just needed better research instead of parents refusing them entirely. She still stuck to his diagnosis of autism and his alleged recovery from it, though. 

By 2010, though, her books were out there in the world, being carried into the offices of pediatricians by well-meaning parents terrified of needles and vials as ammunition in their argument against vaccines.

She is still standing behind them now. She responded to the most recent controversy, which isn't even a new controversy since it is pertaining to the 2010 interview, with this statement:

Evan was diagnosed with autism by the Autism Evaluation Clinic at the UCLA Neuropsychiatric Hospital and was confirmed by the State of California (through their Regional Center). The implication that I have changed my position, that my child was not initially diagnosed with autism (and instead may suffer from Landau-Kleffner Syndrome), is both irresponsible and inaccurate. These stories cite a “new” Time Magazine interview with me, which was actually published in 2010, that never contained any such statements by me. Continued misrepresentations, such as these, only serve to open wounds of the many families who are courageously dealing with this disorder. Please know that I am taking every legal measure necessary to set this straight.

Maybe he does have autism. Maybe he doesn't. Maybe no one should really be listening to whatever she has to say about it in the first place. Last time I checked, she was an actress, not a medical professional.

Made by my dear friend at Manderstanding. It's a joke. Sort of.

The only study that has ever shown a link between vaccines and autism was debunked as fraudulent, and every other study looking for a connection has found none.

Does this mean that we can just wash our hands of the cause of autism and decree from the mountaintops the safety of vaccines? No, it doesn't. I say this not just as a blogger, but as a mother who elected to delay and space vaccines for one of my children because he demonstrates hyper sensitive autoimmune re-activity. I say this as someone who studied for years in the field of public health and can read and understand the papers released when studies are completed with a cynical eye. I say this as someone who worked on the legal staff of a hospital.

I know, because of my background, that medical studies are not ever as clear cut as the media tends to make them. I always, always, always do further research into the funding of the study, where it was performed and look for the players in the background that may be skewing the results, even if unintentionally. I say that I absolutely think that there needs to be more study in the areas both of autism research and vaccine safety. I say that I don't believe we understand enough about either. I've written about the cases where the Vaccine Injury Compensation Program paid out settlements to families alleging a connection. 

I say all these things because I am a well educated parent who happens to be well versed with medical literature. I do my own research. I discuss all vaccination decisions with both my pediatrician and my son's endocrinologist. I don't rely on what an actress said in a book.

No one should.

Doesn't mean that no one did.

Current research tells us that vaccines do not cause autism. 

Current research tells us that vaccines prevent diseases that can cause illness, injury and death.

She knew that, and she wrote all those books anyway.

I haven't read them, I will be the first to admit it. I have to assume that she inserted disclaimers in them about how parents are supposed to talk to their pediatricians and that she isn't a medical professional. I have to assume her lawyers would have forced her put disclaimers in them.

I also have to assume that a lot of people took what she wrote to heart, as she shared this painful journey of a mother desperately seeking answers for her child. I saw the interviews where she cried on television, she railed against the medical establishment. I can only imagine how her words would jump off the page and burn themselves into the minds and hearts of parents in the same place she said she was.

The only reason she was on those television shows, in the pages of those magazines, the only reason her books sold as much as they did? The books where she professed to heal autism?

Her fame.

She used it, and her son's condition, to generate more fame. Her soapbox was bigger, more visible, with a better sound system. It even helped land her a spot on The View.

I have to hope that she did it because she believed it. I have to hope that she wasn't just taking advantage of her son's issues for publicity and screen time. I have to hope that she really felt like she was doing the right thing. I have to hope that she was convinced she was right. I have to hope she was just a scared parent looking for answers.

I have to. Because if she wasn't any of those things, it doesn't make all of this a terrible mistake, it makes it sick and wrong.

There is no way to know how many people believed her. No way to know how many people carried her book into their pediatricians' offices and stood their ground, refused shots for preventable diseases. No way to know how many of those kids contracted diseases they could have been protected against. No way to know how many others were infected by those kids. No way to know how many of them died. No way to know how damaged the effect of herd immunity is because fewer and fewer kids are fully immunized.

This page tries to keep a tally, though it's impossible to say how much of this is because of her influence, and how much is attributed to the anti-vaccine movement in general. This book talks specifically about the damage that people like her have done and the very real consequences of the anti-vaccine movement.

The damage she has done puts an exclamation point on the danger of people who use their fame to manipulate others. She isn't just influencing small trivial things, here. She is influencing life and death decisions and taking no responsibility for it. She will, however, enjoy more time in the spotlight, thank you very much, even if it means threatening a lawsuit.

This is her reputation at stake, after all. That's more important than misleading millions of people.

(sarcasm)

(just in case I needed to make that clear)

(1) I would have linked to the Time article containing the actual interview, but it now requires a subscription.

In this strange and beautiful online world, I have had occasion to meet some truly amazing people. This writer today, one of them. She needed to let these words out of her head, and she needed a safe place to do it. She asked if I would be willing to share her story here. 

With my deepest love and respect, a tale of what it's like to live with and love someone with mental illness, with physical illness, and how hard it is to keep what affects them from defining who you are.

Thank you for sharing your story, my friend. I sincerely hope that you gain some peace by setting the words free.


~~~~~~~~~~~~~~~~~

A Desperate State of Affairs

I once made a friend the most incredibly stupid promise. Back when I was naïve, ignorant and pompous. I truly hadn’t the experience to make such a promise, and yet, with righteous indignation in my heart (and not one CLUE in my mind) I went ahead and made it: “I’ll never locate my self-esteem in my husband.”

What. A. Dickhead.

I had absolutely no business to be making such idiotic pronouncements – at the time, I wasn’t even married, for goodness sake! I was engaged; young, stupid, in love and yet still full of that sense of self which (semi)confident single-dom can bring.

We got married, and in my blinkered state, I managed to ignore that he was stressed beyond all reason. I was irritated at him, but chalked it down to the challenges of his job and the amount of organizing required by the mere act of getting married. We were both looking forward to married life. And its benefits – one above all (and yet untried by either of us).

Sex.

Through the historical strength of our individual convictions and our joint agreement to save ourselves until we had tied the knot, the limits of our temptations were tested and we waited.

The Wedding Night loomed. And in spite of all the stress and tiredness, it was good. I mean, it was nice. It was a very steep learning curve. But, ya know, the earth moved and we both had fits of the giggles and all was well. We congratulated ourselves on our first time being with each other, and reiterated how much we wanted to share the learning on this journey into a hitherto unexplored area of adulthood. We were happy.

I was dumb.

Because shortly after that, things began to go pear-shaped. Or at least, (if we’re using fruit analogies) not ‘nice, big, banana-shaped’. And gradually the realisation that having a spouse with relatively freshly diagnosed Type 1 Diabetes was a bit of a pain in the ass. It impacted HUGELY on his ability to function. Blood sugar too high? Say goodbye to sexy-fun-time. Blood sugar too low? Say hello to shaking and panic and urgent guttling of sugar while the furthest thing from anyone’s mind was their loins.

But there was more to it than even the diabetes. And as our (sadly already meager) sex life waned, illness and depression kicked in, and a long, awful slog towards an eventual diagnosis of autoimmune disorders gone mad and a broken endocrine system, leaving my poor husband with clinical depression, no energy, no spirit, and no spunk.

And because of the pressure (real? imagined?) of sex, he managed to develop a nasty little psycho sexual disorder into the bargain. When he (so, so rarely) was up for it, the chances of everything working as it should were so slim that the frustration of that expectation and the unhappiness of previous ‘failures’ would likely nix any chance of him achieving his happy place.

We began to argue more, and became distant from one another. I started to seek him less, taking matters into my own hands.

I nearly left him just before his diagnosis, and once we found out what was wrong with him, I thanked my lucky stars that I hadn’t gone off to seek a life of hedonism elsewhere, because in spite of my loneliness and wandering mind, deep down, I wanted him fixed – I wanted him back to the guy I fell for. I wanted us to grow old together.

Alas. The diagnosis held horror in store. His condition was treatable, but (because of the nature of the hormonal feedback loops, which are the mechanics of the endocrine system) the treatment would render him permanently infertile.

The doctors stayed the final medication to allow us to try for a child. I wavered, pondering the common sense of bringing a child into a world where his father was so unstable he’d already tried to kill himself twice (as I found out, one chilling day when I accompanied him to a doctor’s appointment to lend moral support). And yet…the idea of not having a child at all trumped everything, and we got busy (now cursing all former ideas of ‘having some time just to ourselves’ and anyone who’d ever told us ‘don’t start a family straight away’).

I found out that I was pregnant. And lost the baby mere weeks in. I was devastated. And he didn’t understand at all. To him it was a loss of potential. To me it was our dear child, whom we had longed for. I was so angry at him, and so hurt. And he so didn’t care, because the depression had taken root deep in his soul.

Eventually I got over my panic that sex might lead to another loss, and we tried again. With the same stumbling, awkward, pressurized, sometimes-ending-in-failure-and-tears methods we’d been used to. And four months later I was pregnant again. And then I wasn’t. Again.

We danced another dance of devastation and depression and wedges driven between us. And all the time, the deadline of that enforced infertility was moving ever-closer. When all of a sudden it hit us amidships, ahead of schedule, when a sperm count found one. solitary. sperm. No medication required. Just brokenness.

We both fell apart, but individually, and turned on each other instead of being able to offer comfort. I couldn’t tell him how upset I was because his guilt at making me upset would overwhelm him, and then my sorrow was transformed into a perceived attack on him and I lived in constant fear that he would try to kill himself again. He immersed himself in computer games, inappropriate amounts of sleep, and endless toy soldiers. No babies were getting tried for, and I could barely stand the sight of him.

The feeling was apparently almost mutual, because on the rare occasion I did feel that insistent yearning for some intimacy and the chance to ride the crest of our union into oblivious bliss, he was disinclined to participate. I vividly remember buying some new, vaguely sexy underwear and showing him, desperately hopeful that his interest would be piqued, but he murmured something vaguely placatory, then got all excited showing me his latest painted man-dolly; not caring – not able to care - that I was missing him or craving his
touch or falling rapidly out of love with him. The depression ruined all of it. We’d not been together for so long I wondered if my virginity was growing back.

And the rejection began to sink in, tapping into deep hurts from childhood, where my self-esteem and my physical appearance were consistently, wilfully, maliciously undermined by my father, who suffered the same brand of mental illness as had my husband in its grasp. The internal voices began rearing their vicious heads again “You’re so ugly. So fat. So disgusting. Even your husband doesn’t want you. No-one could ever desire you. No-one could possibly find you attractive – you’re repulsive, just give up. Don’t even try; there’s no point. Just LOOK at yourself in the mirror? Why would anyone ever fancy you? You’re vile.”

On and on and on they played, driving me near to the brink of succumbing to the depression myself! I admitted some responsibility and started trying to get healthier, slimmer, stronger (and hopefully, more attractive – at the same time feeling terrible about how vain and shallow I was being). Alas, even my shrinking figure was not enough to tempt him. It wasn’t about my size – it was about me. I was a terrible, unattractive, crap wife, and even when I made an effort, I couldn’t get him in the mood.

When you get married, you truly do hope that the one person who will always (or at least most of the time) find you desirable is the one who’s promised to love you forever. And when that person consistently would rather be dead, than alive and married to you, no matter what stupid-ass promises you made so flippantly all those years ago, your self-esteem will be BURIED. My sense of self-worth, already low, plummeted.

I gave up trying to get him in the mood. I focused on getting fitter for myself. So that I felt happy with the way I looked. Whenever one of my friends congratulated me on my success, or paid me a compliment, I brushed it off, but stored the words in my heart, beginning to think that perhaps I’d cracked it – maybe I was finally becoming the person I wanted to be – an attractive one. And slowly, the impetus of those friendly compliments increased, and my self-confidence began to grow.

But alas, the success was double-edged, and my slimmer, fitter self was still not enough to get him interested. It did get someone else interested though, which was in equal measures flattering and unsettling; because it was a friend who was very dear to me, and when she wrote me a letter simultaneously coming out to me and declaring that she had ‘far more than just a crush’ on me, my world got very confusing.

The guy I wanted had only indifference for me, and the girl I never sought, had anything but. And I was caught in the middle, pleased to have been found attractive (if by the wrong person) and wondering what on earth to do.

I shut them both out, unable to cope, and went seeking my validation in (marginally) less harmless ways, becoming an incorrigible flirt; enjoying the thrill of suggestion without promise and the return of the same. Meanwhile I was still awash with grief at my losses, the impending membership of the ‘Can’t Have Kids’ club, the lack of any kind of movement on the ‘Trying To Have Kids’ status and at the train wreck of my marriage, and I continued trying to get fitter (more beautiful? nah.), allowing myself to run in the dark, alone, deep in my tortured thoughts.

Because there was no way I could justify an affair. Even if I wanted one; craved one; was desperate to be desired and found womanly and attractive. And there was no way I could allow my desire for a baby, coupled with my need to be found desirable, to ruin the marriage I’d vowed to stay faithful to. But what if *something* happened to me, one night, in a dark corner of the city, which wasn’t my fault…which lifted all responsibility from me…which left me pregnant…what then?

Such shame. Such anger, that those kinds of thoughts were even entering my brain and at the same time, the idea of a completely guilt-free dalliance was alluring. I kept running alone, knowing all the while that the reality of that situation would be vastly removed from my sanitized fantasies. Fortunately, it never happened.
I went back to flirting with other people, instead. And things still weren’t fixed between my husband and I. But gradually, slowly, they began to improve. He finally got some much-needed help and the depression lifted ever-so slightly. I was 50lb lighter, far more pleasing to the eye (even to my own) and much fitter. But there was still the matter of sex, which is meant to bring such joy and unity in marriage, and which was so missing from ours. He was offered psycho sexual counselling to help overcome all the hooked-in negatives which accompanied the act for him. But he declined, unilaterally deciding that if he was beginning to be less depressed, he wouldn’t need it.

Except that I think he does.

And our baby deadline is February.

And I just don’t think it’s going to happen. And guess what, folks, there’s a whole vicious cycle right there – because if I’m stressed, I’m less likely to conceive. I’m also less likely to be ‘in the mood’. And as it frequently still takes a great deal of input on my part to get the mood going, guess what’s not happening…

We are truly (un)fucked.

And in spite of things (and one rather important one) being largely ‘on the up’, to quote a rather good movie – “It will all be alright in the end, and if it is not alright, then it is not yet the end.” - I know it’s not yet the end…because it’s really not all alright.

And I’m not sure I can see how it’s going to be.

But at least I look good.

My deepest and most sincere gratitude to those who were willing to share their stories with me. Diabetes is a complex disease as it is, but the fact that so many people have an emotional relationship with food makes it worse. Add in the fact that food is a necessity to survive, and it becomes more so. We have to eat. Having diabetes just makes every meal difficult. Every choice becomes important. Every indulgence dangerous. The food you need to survive could be the very thing that kills you. 

Some people can't accept the lifestyle changes that are part of this disease. Some pretend they don't have it, minimize it's impact in their lives, convince themselves that they will escape the complications that happen to other people.  

With love and respect, their stories.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My dad was diagnosed as diabetic at age 66. My mother had suspected for about 5 years that he was becoming diabetic. There were 2 problems in getting a proper diagnosis: He is extremely doctor-phobic, and he was getting close to retirement. Since mom prepares all of his meals due to his severe food allergies, she started trying to regulate his diet as much as possible. Also she made him cut down on sugary drinks and snacks. After he retired she finally got him to see a doctor.

She told the doctor all her observations and had to basically bully the doctor into doing a blood test because "I couldn't possibly know what I was talking about." Yeah Dad's blood sugar was in the 500s. Mom got a LOT more respect from the doctor at that point.

It took Dad about 3 years from diagnosis to be able to say "I'm diabetic." Mom did all the meter stuff, charted how well each different medication worked and consulted with the doctor until they found the right "mix". She still regulates his diet, hands him his meds on schedule, all that stuff.

Unfortunately, going that long undiagnosed had a very bad effect on Dad's eyesight, to the point that he can no longer drive and has trouble seeing large print. I'm sure there are other complications that they haven't shared with me.
- Joy
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My husband has been having medical issues lately. His last lab test showed sugar in his urine. Having a daughter with Type 1 Diabetes, we knew what that meant. The doctor was not diagnosing it yet and wanted to do an A1c test. 

Two years ago today, I kissed my mother, told her that I loved her, then sat in a waiting room alone and cried.

On that day, so very coincidentally on World Diabetes Awareness Day, her life was changing irreversibly. All of our lives changed that day.

They'd already changed so much in such a short period of time.

I thought I had lost her the month prior, though that time for a different reason.

On November 14, 2011, I told her I loved her, not knowing if it would be the last time.

The afternoon before, I had called a dear friend of mine who is a pastor. She came without asking any questions and sat with us as we bowed our heads, held hands, wished for guidance and peace.

She did just that. She brought us peace. I can never repay her for that kindness.

By then, the choice had been made. It had to be made or a certain ending would rapidly come. The word choice is a bit misleading when the only choice is to choose or die.

It was gangrene. There was no question anymore.  The tips of her toes had blackened, and the telltale signs were spreading upward too fast. We'd waited and hoped, she'd gone through several prior surgeries to try and save the blood vessels. Days when she was sedated in the ICU with gigantic metal wires in her femoral arteries trying to pump medications directly to the blocked arteries. None of it worked. We'd exhausted every other option.

Weeks had gone by like this. Trying to save the leg, her in excruciating pain when she was conscious enough to feel it, knocked out most of the rest of the time. I can't tell you how many hours I spent sitting in hospital chairs, waiting for her to wake up, hoping to catch the doctor, asking questions that never had the answers we wanted to hear.

Then it was time.

The surgeons were called.

For all the time spent waiting, we knew that time was rapidly speeding up. We had to do it now, or risk needing to go higher. The higher the amputation, the more disabling it would be, the harder the recovery, the more life altering.

It was all going to be hard no matter what.

It had already been hard.

My mother had been diagnosed with type 2 diabetes about two years before that day, though she didn't want to accept her diagnosis. In reality, she had probably been walking around with it for a long time before then. She lived in denial of it, refused to accept it. She didn't want to hear doctors say that smoking was especially dangerous with diabetes, that her clotting disorder put her at an exceptionally high risk for circulatory problems, that she could lose her legs, that any number of other things could happen...so she didn't. She willfully ignored it all, even though she had already had a DVT many years prior. We tried all we could think of to help her come to a place of acceptance. We all tried.

Every so often, she would try. A little. For a little while. Until it got hard.

It always got too hard.

She didn't want help. She didn't want anyone going to the doctor with her. She didn't want anyone helping her figure out what to eat. She didn't want anyone asking how her numbers were. She worked pretty hard to keep us in the dark about it all. She changed doctors frequently, she refused to let us talk to them. All we ever knew was what she wanted to tell us, except for when she was in the hospital and we'd find out the hard way.

After my father died, she spiraled downward very rapidly. Her diabetes, never well controlled, got worse in a hurry. She moved closer to us, but still refused to allow any involvement with her medical care. On a day that she had no choice but to ask for help, I took her to a podiatrist. The pulses in her feet were both weak. Severe peripheral artery disease. He was concerned, she just wanted it to get better. His face told me how serious it was, but she never saw it. She just wanted to go out to lunch.

She labored under the delusion that modern medicine could fix anything.

Not long after that, she ended up at the emergency room with a foot that kept changing colors. The blood supply was slowly being cut-off, and I watched as her foot slowly died a little more every day.

Once the first amputation was done, we lived in fear of the next. We knew the statistics, and they weren't good. An uncontrolled diabetic was far more likely to require a revision of the first amputation or to require amputation of another limb within a year. Only four months later she was being taken in a helicopter to another hospital where a vascular surgeon would try to save her remaining leg. Her life leg, they called it.

Her life leg.

They put her in a helicopter that morning because it was her only chance to live and everyone knew it. I stood in a parking lot alone as I watched her fly away, sobbing uncontrollably. The doctors at the hospital they took her to managed to save that leg, that time. She was in the hospital for weeks, a rehab facility for months.

I drove back and forth to that far away hospital almost every day, just to sit in a chair for hours again waiting for her to wake up, waiting to catch the doctor. I dropped everything else in my life, again, only to find out that she wanted to leave as soon as she was able. I couldn't stop her.

She decided to move back home, a thousand miles from here. She didn't want to stay in a facility, and I couldn't take care of her. Her needs were too many, our resources too few, she still refused to accept her condition, there was too much else to the story and I just couldn't do it. I couldn't. It had nothing to do with what I wanted to be able to do. I couldn't do it.

With the oldest a few weeks before she left.

She never forgave me.

She lost that leg almost exactly a year after the helicopter flight, in March of this year.

I had no clue it had even happened until weeks later when she threw a clot and had a pulmonary embolism. It scared her enough that she called me.  It took her two more days to tell me she lost the other leg. She didn't want me to know. I only knew what happened here because of physical proximity, because I could lay eyes on her, because when she was asleep at the hospital the nurses would talk to me.

Once she left, there was nothing I could do to try and help her. I couldn't even find her half the time. I called and called. I never knew if she was alive or dead. We checked obituaries habitually, reluctantly, just in case. When I could find her, sometimes she would talk to me. Sometimes she wouldn't. More than once, she forbade the nurses from talking to me on the phone.

I was a thousand miles away and no one would tell me anything. It never stopped me from trying.

She didn't want help. She never did. She wanted someone to tell her that she could eat whatever she wanted, that soda was safe, that smoking wouldn't hurt her. She wanted someone to tell her that it would all be okay, that it could be fixed, that she could be better. She wanted a magic cure. I couldn't tell her those things, I wouldn't tell her those things.

I couldn't enable her.

Choosing not to was the single hardest decision of my life, even if no one else ever understands that.

I wanted her to live.

It didn't matter what I wanted.

It never did.

My Mom died last month after gangrene set in again, this time in the remnants of both of her legs. She was offered, and refused surgery to revise the amputations. She didn't want to go through it again. I understood. They would have needed to take both legs at the hip.

She went onto hospice and was gone in a few short weeks.

It still doesn't seem real to write that.

It seems like some horrible nightmare, like things like this don't actually happen in real life, shouldn't actually happen in real life. No one should ever be subjected to the pain she was in. I know how awful it was when she was here, when it was only one leg. I can't even begin to imagine how hard it must have been at the end, and I'll never know because I was here and she was there.

It doesn't feel like she is really gone.

It doesn't feel real because I've kissed her and told her I love her so many times before never knowing if it was the last time. I've said goodbye to her before, more than once.

This time it is real.

It seems stranger yet to be writing about any of this here. She didn't want people to know about any of her medical problems. She didn't want people to know about the diabetes or the amputations. As crazy as it sounds, I did my best to honor that. To protect her. I never wrote about any of it. I couldn't enable her, but I needed to protect her. I still am protecting her because I won't write about all the other chapters in this tale. Maybe someday....but today is not that day.

Even if no one believes it, I loved her.

God, I loved her.

Love wasn't enough.

I hadn't seen her in over a year when she died. I would have given anything for it to be different. It wasn't.

My mother taught me a great many lessons in her life, the last of which is this: if someone doesn't want help, there is nothing you can do to help them. Only they can help themselves.

Type 2 diabetes can be managed, if you choose.

These complications can be avoided entirely or delayed or reduced in magnitude.

If you don't control it, it will kill you.

I promise you it will. 

Maybe not this way, but somehow, it will kill you.

My Mom's diabetes was uncontrolled. Now she's gone, and there is nothing I can do except tell this story in the hope that someone out there who needs to read it will.

I miss you, Mom, and I love you.

I wish things were different. I wished it then, I wish it now, but wishing doesn't change anything.

She always struggled with this time of year as it held reminders of too many people she had lost. I struggle now too, and have one more day on the calendar to dread. I can't just be somber though because it's not how I work.

I have to do what I can to help others understand the devastation that can be done by this disease.

Check your sugars.

Please.

Today I am sharing the stories from two T1 Moms, about how their children were diagnosed with diabetes. I opted to run them together because there were so many similarities in the stories.

The lessons to take away here are these: know the symptoms and understand that most of them are totally non-specific, when in doubt always always always just go to the doctor just in case it is something to worry about and never underestimate the ability of a child to tell you that something is wrong.

I love both of these ladies, and they have both been tremendously supportive to me and my son in the past year. With love and respect, their stories.
~~~~~~~~~~~~~~~~~~~~~~~~~

During the Christmas break of 2011, my son started to have issues with his stomach. Food started to not settle. Anything touching it, would come back up or hurt staying down. Should have been the first red flag. I didn't know. The month or so following that break, he spent either in his room sleeping or at school. He was 12, I thought he was either having a growth spurt or puberty was showing its ugly head. So, when he started losing weight because of the lack of desire for food and sleeping all the time, I blamed puberty. Second red flag. I didn't notice more thirst. I didn't notice more bathroom breaks.


February 6th, 2012. I got a phone call from the school nurse. She told me that she had a talk with my son. He had come to see her by way of the school psychologist. I found out he had gone to see the psychologist because he didn't feel well and he didn't think we (his parents) were listening to him. So he did something about it. And the psychologist took him to the nurse. Who in turn, called me at work. We talked about what was going on. I told her what I thought was going on. Puberty, and maybe a cold? I didn't know, so I agreed that he should be seen by his doctor. I got off the phone with the nurse from school and promptly called the doctor. That was a Monday. He got an appointment for Friday, February 10th.


I took him to the doctor. Told him all the things going on, and he ordered blood work and urinalysis. Now, my son is terrified of needles. Especially shots and draws from the arm. This was agonizing for him, damn near panic attack. We went back to the exam room. We waited. We joked. We laughed. Then the doctor came back in. He looked at my son. He looked at me. Then he said that my son was in something called Diabetic Ketoacidosis. And we needed to go directly to the Children's Hospital. Essentially his body was eating itself to keep going. My heart stopped. My brain exploded. My perfect baby. My 12 year old son HAS DIABETES.


He was in the hospital for a week. It took that long to bring his numbers down. And to educate him, as well as us. He learned what to do and when. He learned from endocrinologists. He learned from dietitians. He talked to pediatric psychologists. The Children's Hospital was AMAZING.


HE SAVED HIS OWN LIFE. HE did it. He talked to people until someone heard him. And for that I will forever be grateful.


Things don't always present with clear cut symptoms. Excessive drinking and peeing are classic indicators. But I didn't see them. I missed the other flags. I missed it all. I failed my son. My guilt over my part will never lessen. But my pride in my son? Never will diminish. He is amazing. He can calculate his ratios in his head, without a calculator. He still panics with a shot, or IV, or blood draw. BUT he does his testing on his fingers for his daily testing with no issue. Yes, he hits bottom from time to time. Yes, his numbers go all wonky when he's sick. BUT this is not the sum of him. He is NOT defined by his pancreas's inability to produce insulin.

- Anonymous

My daughter, Laura, turned 11 on February 11 2010. She played softball on 2 teams. The little league and a travel ball team. One Saturday in March she came to me carrying a laptop and crying. When I asked her what was wrong she showed me the web page on the laptop. It was web MD's symptoms of type 1 diabetes. 

I live with juvenile diabetes everyday. But, I do not check my child’s sugars.

I live with juvenile diabetes everyday. But, I do not wake up to do 3 a.m. checks.

I live with juvenile diabetes everyday. But, I so not have to worry about keeping insulin cool.

I live with juvenile diabetes everyday. But, I do not have to worry about keeping pump supplies on hand.

I live with juvenile diabetes everyday. But, I sleep through the night without worrying if my child will be awake in the morning. Because she is already dead. You read that correctly. The last time I spoke to my daughter was September 15, 2011.