Mass Violence, Mental Health and Gun Control

Yes, it is beyond horror, when so many are dead, and the most of them children. I cannot begin to imagine losing a child in such a way. Having said that, I did lose a child to severe mental illness and drug addiction. And with all the talk these days of gun control, I cannot help but think we need mental health reform in our country.

I know first hand how helpless you feel when someone you love is mentally ill. If that person is an adult, even though by the very nature of their illness they are unable to make their own decisions, that is exactly what they are allowed and expected to do. IF you can prove they are a danger " to themselves or others", they will be admitted to a facility for three to five days, medicated and released. They are expected to comply with meds, follow up with therapist and after care, etc. It is a list that someone who had it all together would find daunting, and someone who is mentally ill simply cannot do it.

My attorney once told me " there is no place for people like your daughter in America; she will wind up in prison, on the streets, or dead".

He was exactly right.

Is their no one to speak for them? No one to advocate? Hippa privacy laws that are applicable in every other medical situation have no place here. These people aren't capable of making their own medical decisions. My daughter never even realized she was sick. And she was very very sick. 

So today my thoughts and prayers are with the families of the victims, the family of the suspect, those suffering from mental illness, and all  the families and people who love someone with a mental illness. God help us all.

Denial, Love and The Prince....

I am blessed to have two grown daughters and a man  I will call The Prince whom I have dated for more than six years now. Only one of my daughters can tell you the name of my illness, what my diagnosis are, and how these illness affect me. She is also the only one who has a clue what to do if I have a POTS episode. Ironically, she lives 300 miles away and is the person I see the least.

This is incredibly frustrating for me. I know without a doubt I am loved deeply by these people. After much pouting, stomping my feet and several private ( some not so private) pity parties, I have decided they simply can't cope with the reality of my illness or the limitations I have so they chose to ignore them. It makes their lives easier, and I know first hand how hard it is to watch someone you love suffer with an unremitting illness.
What I also have to recognize is the part I play in allowing this ridiculous charade to continue. It is a drag to be with someone who is sick, and even more of a drag to be the sick one. I don't want to complain because my mother did enough of that to last us all a lifetime, so I rarely talk about my illness to anyone other than my oldest daughter, who is the only one who truly acknowledges it.
 I don't know the difference between complaining and explaining anymore.
I'm angry because I shouldn't have to explain the basics to the people who have been in my life for so many years.
I want someone to know what to do if I have an episode, better known here in the south as a "spell".
I want someone to acknowledge my limitations and occasionally remind me when I am pushing too hard.
I want someone to understand just how tired I am all the time.
I know it's hard to love someone who is sick.
It's also hard to be sick every day. All the time.
I know it's easier to pretend it will go away if we don't talk about it or make a joke about it.
For me it never ever goes away, not for a minute.
I know it's easier for you.
 That doesn't mean it's easier for me.
This leaves me in the position of pretending nothing is wrong, which takes a tremendous amount of energy that I don't have to waste on this kind of BS. I have a fourth child to raise who is two and depends on me.
When I try to talk about my illness, I am met with blank stares, uncomfortable silences and a change of subject.
Sigh.
The literature I give gets thrown in the backseat of the car, where it is promptly forgotten about and never read.
I have to much damn pride to force feed information about myself to anyone.
So....back to square one, where we pretend everything is fine. I live alone, except for a two year old, so that makes it easier to hide all the messier, in your face aspects of a chronic illness.
I wish I knew how to stop feeling guilty about all the things I can no longer do.
I wish I could just figure it out.
The thing is, I love them too. And I understand they just aren't ready to hear what I need to say.
Maybe they never will be.

Bless your heart......what does sick look like?

In the south when we say bless your heart, chances are you are not being blessed. Although we do say this when consoling someone, generally speaking it most often accompanies an implied insult of some kind. This has become my standard response when someone tells me " BUT YOU DON'T LOOK SICK".

Now any chronically ill person will tell you this is one of  the most insensitive and infuriating things they hear. And we hear it a lot. And perhaps after a while some of us become a wee bit sensitive, but what we hear is " You look fine to me, so I think you ...just want attention...are lazy....like to be a victim...figured out how to work the system....blah blah blah."
Add these comments to the glares we get when we use a handicapped parking space and get out of the car bearing neither a cane, walker or wheelchair and it makes me mad as a wet hen.

The biggest surprise is how much all this bothers me. I was always the black sheep, and for so many years what others thought of me, especially people I didn't even know, never entered my mind. In fact I was baffled by friends who fretted so much over " what will people think"? So why does this bug me so much?

For me I think it comes down to pride. When we become ill, we lose so many things. Some of us lose our jobs, our homes, our dignity. We lose our way of life, and can no longer do things we have always done. We lose our sense of self, because so much of our identity is wrapped up in our picture of ourselves as the athlete, the overachiever, the reliable one, and so on. So who do we become when we can no longer be that person?

 I had always taken pride in raising three girls with no financial support. Having said that, I had no 401k or retirement, no savings account to cushion me because we lived paycheck to paycheck. So although I was able to provide for myself and my girls, when they were grown I was broke. I thought these were the years I would work hard and save money. So I now find myself in my mid forties, educated and dependent on the social security disability check I get every month, and I'm darn lucky to get that! It took two years and two attorneys to get the disability I had paid into since starting work at the age of fifteen, but don't even get me started on that, it's another post for another day.

And since I am now raising a baby, I am eligible for a small amount ( and I DO mean small, less than $50 per month) of food stamps. I cannot tell you the glares I get if I happen to have on a piece of jewelry ( which was a gift from my daughter and is not even a real diamond ) when I scan that food stamp card. I have taken the stupid ring off and put it away. But the worse part is the way it stings my dignity to use that card.

So when people look at me and say " You don't look sick" or " But you look good" I just smile and say Bless your heart......because its nicer than saying " And you don't look like a moron".

You have what?

A number of conditions are forms of dysautonomia: postural orthostatic tachycardia syndrome (POTS), inappropriate sinus tachycardia (IST), vasovagal syncope,pure autonomic failure, neurocardiogenic syncope (NCS), neurally mediated hypotension (NMH), orthostatic hypotension, orthostatic hypertension, autonomic instability, and a number of lesser-known disorders such as cerebral salt-wasting syndrome. Dysautonomia may occur as the result of other diseases, such as diabetes mellitus, multiple system atrophy (Shy-Drager syndrome), Guillain-Barré syndrome and a number of other conditions that may affect the nervous system.


The above is a direct copy from wikipedia regarding dysautonomia. The quality of life and prognosis varies greatly dependent upon each person's diagnosis.

What these definitions never convey is the reality of living with such a diagnosis. I learned long ago that after checking the "respectable" teaching hospital websites for symptoms, treatments and prognosis of illness, the way to get the real picture of any illness was to become a lurker on a forum for patients and caregivers of that illness. This is where the true picture emerges and not only can you get tons of support, but it is an invaluable tool for information of all kinds.






I would love to credit someone with the above image but I have no idea where I found it.


My diagnosis include postural orthostatic tachycardia syndrome (POTS), inappropriate sinus tachycardia (IST), and then just for fun add borderline long QT syndrome, myofascial pain syndrome, and fibromyalgia. I have also had a host of mysterious neurological symptoms surface within the last three years which do not seem to fit with my present diagnosis but do fit with other forms of dysautonomia. 
Lots of money, lots of test, lots of time later I have a slew of illnesses which have no cure and very little in the form of treatment. The drugs traditionally used to treat low blood pressure that seem to work well for others make me very ill. Being the proactive and independent girl that I am, I have devised my own way of coping, which works pretty well until it doesn't.

Please join me on this crazy, mixed up, amazing journey we call life. Who knows where it will lead?