Medication and Side Effects – My take

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The Cake Walk

 

I’ve always been amazed at those commercials about medications on tv that tell you about how wonderful a medication is and then go thru the list of all possible side effects.

May cause shaking, dropsy, walking or eating in your sleep, drowsiness, scurvy and death.

They always say death the last. Just the possibility of one of the side effects is enough to turn people away from the benefit. And I understand that fear. I’ve seen some pretty scary side effects from psych meds over the past 20+ years. I’ve had a few, not too serious ones.

Like the death mask. It was a dark rash, only on my face, that highlighter my skull. Like a skeleton mask. Not very attractive and not the normal side effect. Of course I stopped taking the med and it went away.

I’ve always made sure that when I was about to have a medication overhaul, I was in the hospital. That way, if the side effect was severe, I was in a safe place.

I’ve been on A LOT of meds since my diagnoses. One doctor joked, ‘do you rattle when you walk’. Meaning, with all the pills rattle around inside me so loud, that you can hear them. Not very funny, and there were times I was ‘over’ medicated. So I had to go back in the hospital for my own safety and they took me off all my meds and started from the beginning.

I’ve been thru all the SSRI’s, only been prescribed one MAOI and had a  reaction to that one.

I’m not going to talk about all the side effects I’ve been thru, if you want a greater understanding of meds, here’s a good start.

Mental Health Medications it on the NAMI sight.

I understand that the choice to medicate or not to medicate ones self for a mental health illness is personal. There are people who have told me that I’m pouring poisons down my throat and that they’ve gotten over their problems without meds.

I was like, ‘problems?’. Well you know what, good for you. God bless you. Buddha bless you and have a great day.

But for what ails me, I need meds. For my own mental health, safety and peace of mind. I want to be here. I don’t want to hurt others in any way. Not to say I’m gonna get dangerous, but words can hurt you too; and when I’m angry, I can be pretty hurtful.

I give a pill 2 weeks worth of side effects and if they haven’t gone away, I know it’s not for me. I’ve done the thorazine shuffle and have sat there, like a zombie disconnected from the world. But it’s gone away in time or rather I adjusted.

I’ve never had Tardive dyskinesia, which is rare; because most of those meds which cause it, aren’t used any more. But I’ve seen it and yes, it is scary to have and too watch. But I’ve also seen the person recover, pick up the pieces and move forwards with a medication that worked and got their life back. Working, driving and pursuing love, which was very important to him.

You can’t give up on the pursuit for the right medication. It took me 20 years to finally find one that kept me stable. Looking back, it didn’t exist when I first got ill. But it’s here now and I’m here now, because I just didn’t give up.

It’s no cake walk. And you will be surprised at the amount of strength you have in yourself to just keep moving forwards and trying different meds. Different combinations, or cocktails as I call them.

What works for you, may not work for someone else. We are all individual beings, so why should one med work for all people.

For those of us who choose to medicate, keep this in mind. It may not happen overnight, or it might, but eventually it will happen. You will feel better. And if you do, be conscious enough to realize, it isn’t because it went away, but rather; it’s because you’re medicated and the meds are working. SO KEEP TAKING THEM !!!

Mental Illness isn’t a cold or the flu. The meds aren’t designed to be taken for 7 days and then quit because you’re cured. No.

Its like having diabetes. You have to take them every day too keep the symptoms from reoccurring. So yeah, it’s a life thing for the majority of us.

So yeah, I’m married to my meds. And I know, I am only able to write this, because of the meds. I am stable in this moment. And that’s all that counts.

Not the number of meds or the side effects I’ve been thru or how long it took to get here. But the fact that I am here, and I have many friends who are not. Who didn’t survive the battle and it is an internal battle, fought daily and won by me and my meds.

And my fucking medal is LIFE.

(She drops the mike.)

Undertaking – Considering a book

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I let it slip in therapy that I was considering writing a book. Hell, who isn’t. Mine would be a story concerning mental illness and hope.

Although there is much more to it, I’m not gonna give it all away here, in case I’m unable to follow thru. It’s hard sometimes just to remember to post to the blog or call a friend or return an email from someone important.

It’s not that I get busy, but the moods sometimes distract from the task at hand.

I hope I can give at least an hour towards character development etc. and then dive into the story, which I have started already. I just want to make sure I have enough structure.

I can’t promise anything, but I hope I can do it. It would mean so much to me and reflect what its like to be BiPolar without the ‘snake pit’ image portrayed so often in the past.

For those who don’t know the ‘snake pit’ reference. Click here – SNAKE PIT

 

Not to say it wasn’t a good movie. But the treatment of the mentally ill is different now and still lacking.

I just want to open some eyes and get this story out of my head somehow. I just hope I can do it.

 

So, very tired

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Tried to get out of the house today. But I am just too tired. There are days when all I’m doing is dragging from one room to the bed. And no matter how positive I think or how much sugar or protein I ingest. My body is just too tired to move.

I’m off one med and waiting to see how I am feeling to see what other med I can be put on for the microplactinoma. Maybe they’ll just leave things as they are, right now I don’t know.

All I know is that I’m tired. Very, very tired. And I’m scared.

After all these years, BiPolar doesn’t scare me as much as physical illness does. Sure they can most of them, but I seem to be getting the ones that can only be managed. And that’s distressing at times.

 

The March – a poem repost

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I wrote this poem in April of 2016. I think this is a good time to repost it.

The March

When we join to march on Washington to end Stigma against the Mentally Ill

The turn out will probably be small

I will be there, my mother and hopefully a friend or two.

 

But CNN, NBC and ABC will probably have better things to do

As I said, the turn out will be small

Maybe a local paper or a blogger

But it won’t make international news,

No BBC World for this strut.

 

Because in their eyes and closed minds

There is “NO” story.

 

As for the Marchers,

None of us will have guns or planes or buses to crash into building and mountains

None of us will have shot up a school or post office within the past few days

Many of us will have medication and a water bottle to take them with,

Oh yeah and sunscreen, because some meds make you sensitive to sunlight

You can get dehydrated.

 

If we get a hundred of us to show up

I would be quite surprised.

It’s not because our numbers are few, oh no

We number in the millions.

 

If you look to your left

If you look to your right and smile

We are there, the mentally ill don’t wear a Scarlet MI on our foreheads

But we are present.

 

When the March on Washington to help end Stigma against the Mentally Ill happens

The turn out will be small,

Not because of the numbers,

Rather, because the backlash the next day, will be fierce

 

For the one Television Station that does show up will broadcast our faces and

Bob from accounting.

 

And the next day, he will return to work and he will no longer just be Bob

No longer the guy they chat up at the water cooler and play fantasy football with,

No longer the Aerosmith fan in the next cubical, or the one who makes office lunch runs on Wednesday

No longer the cute guy from accounting, with the daughter on the honor roll.

He won’t be Bob anymore…

 

Bob will become, the ticking bomb

In the eyes of his co-workers and employer

The nut job next door, to his neighbors who use to admire his lawn tending skills

The crazy used to carpool with the other guys, until the March on Washington

And they all saw his face with the sign, “I am Mentally Ill… Let’s do lunch”

 

For each Mentally Ill person who makes the headlines

There are tens of thousands, who never will.

 

We fear losing our jobs

We fear losing our friends and our families

We fear losing our lives we have worked on so hard,

Day after day too keep together

like anyone else, with one slight difference.

 

The therapy, the meds, the coping mechanisms

The private break downs and possible inpatient stays.

All designed to keep it together, and we do.

 

So, when we all join to battle Stigma

The few of us who have come

I guess we will be there for the Bob’s and Jane’s,

Who can’t attend, because of what they are afraid they will loose.

 

The Stigma is that strong, the prejudice, the persecution.

Like Blacks and Gays, who have had to fight for years to be seen, heard and counted

I wonder if we will ever get our March, or Stonewall Inn.

 

We have always been the family secret to me hidden away somewhere since the days of Ancient Rome.

And here it is, here we are today and no one is willing to march with us or for us.

To identify our struggle,

 

We fight everyday, just to have a life and bring home a paycheck

We seek out treatment and help, when sometimes no help is offered or available.

When we can’t afford our medication and we have to ration out what we have left, if any.

 

No March on Washington will take place

Because we fear that the love and admiration we may have now,

will turns to fear from our family and friends

Once the mask is taken off and we are labeled.

 

So the mentally ill won’t come.

The media will pass, Bob’s job is safe

And we will continue day to day

We survive and we do it damn well.

Because we are strong and because we can.

DIH

3/09/2015

There are answers out there

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You don’t have to broadcast. Or walk around with a t-shirt displaying your illness. But being open to discuss what its like to be Bipolar or Schizophrenic or depressed or have bouts of anxiety. Is a type of bravery, that most people who don’t fight the good fight, have never known.

The stigma attached to being mentally ill, dates back to Biblical times, so there is a lot of work to be done. To break down those walls and DIALOGUE is the best way to make them crumble.

There is no shame in being ill. Take care of yourself. Mentally and physically, the best way you know how. And if you don’t know how, just ask. It can be your doctor or someone you know who has gone thru the same battle or your therapist or even an online support group.

Education has always been the best way to battle Stigma and discrimination. And the more people know, the more those walls will come down and we can have free discussion and get help to people who need it.

I’ve been fighting this battle for over 20 years. And I am still here.

That’s a strong statement; I have many friends who can’t say that and I could not give you a simple answer to how I’ve survived, but “I’m still here”.

Never feel like you’ve been cursed or that you are less of a person because you have an illness. It may take a long time to get to a place of stability, and it may be shaky at times. But it’s all part of the journey. And if you take it day by day, moment by moment, you will be surprised at the inner strength you have.

Just reading this post is proof that you are strong. You want to know more and you are willing to do something. Don’t give up. There are answers out there.

Everyday I search for a way to survive, and somehow I am doing it.

A quest for stability

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scale

 

 

I believe in destiny. And fate, which makes me wonder about my present situations in life. Life may not be the greatest, but I tell myself and I know “IT COULD ALWAYS BE WORSE”.

I look at people in other countries; whom, if they were in my present state of life, would be dead. I don’t wonder about “WHY” anymore.

Sometimes, there aren’t any answers. It is what it is. No why’s, it just is.

If you obsess on answers to why you are physically and mentally ill, it will send you out of your mind. And the whole point is to be stable.

I don’t believe in the term ‘recovery’ when applied to mental health. Because you never recover from some illnesses, they can go into states of remission. But you have always be diligent about triggers and over doing things.

So it’s just a quest for stability. In my eyes.

There are people who have gone thru stages of depression and have reached recovery.

But for the BiPolar and Schizophrenic and Schizoaffective etc.; these things never go away. And that is the reason why I believe in taking meds diligently and keeping up with therapy to help support the medication. Like a one, two punch.

There are millions of people who suffer daily. And they suffer in silence, due to fear and stigma and family influences. And that saddens me. Because you are not alone, not by any means. And that’s something to remember.

 

 

All quiet..A simple blessing

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It’s strange how you can have a down time. When the depression isn’t there and the mania is at bay. You know that somewhere in the back of your mind, you’re waiting for the other shoe to drop.

I’m waiting for another flare up. Which will trigger some anxiety and that’s always fun.

The ‘growth’ on my pituitary gland caused a depression wave from hell.

I wish I could just enjoy what I have now. Live ‘in’ the moment as they tell you. But is that lying to yourself?

I have to always be on my toes for triggers and symptom and all the other stuff. Leaves you on pins and needles at times.

But I’m trying to forget all that and just enjoy the peace. It’s not as easy as it sounds, I think it kinda leaves you blind sighted to things and you can’t see them coming until it’s too late.

But I don’t want to live on a tightrope.

So, for today; I will eat what’s left of my birthday cake. Read Locke & Key, the graphic novel. And try to get some rest. It’s finally getting cold around here.

I guess that’s living in the moment. Tomorrow can take care of tomorrow.

But I won’t be blind to my environment and what may effect me negatively.

Today is a simple blessing and I accept it without reserve.

Prolactinoma

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I have no way of knowing how it came to be. But it bothers me. To know that there is something, in or near my brain. Just sitting there, doing nothing but secreting ‘crap’ into my head.

One doctor a long time ago, told me that our bodies ‘grow things’ for no reason. Is this the case here?

I had a cancer scare with the thyroid. I’ve got the mental illness and it makes me wonder if this could be the cause for the mood shifts. If by taking this hormone, Cabergoline, will improve my BiPolar status or get rid of it.

There is a scariness to this, cause I can hardly remember life before BiPolar, it’s been over 20 years and I don’t think I would know what to do, maybe I could just ‘Live again’.

But, I doubt this dream.

I found some info from the Mayo Clinic and I have had many of the symptoms, including infertility and eye sight problems. Going to see the eye doctor real soon. More tests.

I’m just glad that surgery is not part of it, I’m done with surgery. Having gone thru so many operations.

There is a possibility that if it shrinks and my prolactin levels stay low for over 2 years, I can taper off the pill.

I kinda thought I was stuck with it for life. The nausea, anxiety and tiredness that is causes. At least it’s only once a week.

Otherwise, it’s another dodge for me. But I’m still scared. I don’t like this feeling at all, a sort of waiting for the next shoe to drop, type thing.

For the curious, here’s the link;

PROLACTINOMA

 

A phone call

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Sometimes you run across a doctor who EXTENDS beyond the 9 to 5 and will call you on the weekend or after hours.

My endocrinologist is such a doctor. He called me yesterday and let me know my diagnoses and my treatment.

I can treat this with hormones. Although they do have a side effect of fatigue and nausea, it’s a lifetime commitment to this pill. It will stop it from growing and stop it from producing prolactin.

It has seemed that lately its been one thing on top of another. I just wanna run thru the fields like Laura Ingalls in “Little House on The Prairie”, without a rock tripping me up.

But it seems those days are gone. I don’t want this blog to be a constant report of what goes wrong when.

I did find out that what I have does effect mood cycling, so it may be a blessing in that respect.

I recently went thru some deep depression. About a week’s worth, around the holiday’s when everyone is so happy and thankful for family. I just felt so alone, despite the fact that my mom was there with me on New Years Eve.

Sometimes it’s so hard to deal with the holidays. Sometimes its hard to just DEAL; the illness is intertwined so much into my life.

There is no end to it, it is part of me. But it is not who I am.

No news may be better

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We never know what may be going on in our minds or head. Mentally or physically.

For me, I’ve dealt with the mental for a few decade. But now, the physical has come upon me and although it offers some possible answers, it’s still not the easiest thing to take.

I have a functioning pituitary adenomas. A type of tumor near my pituitary gland. My pituitary is fine, but this adenomas is excreting prolactin and some other stuff.

Found this out on a Friday, so my endo hasn’t been able to read the results and get back to me. It’s small 4×2 mm, but it could be effecting my eyesight, moods and weight.

I don’t know how long I’ve had it, just started getting these pressure headaches. Not sure how much is sinus or otherwise.

So no news is good news, unless they give you answers.

I’m not ready to do any hard research, just letting the news settle.

Yeah it scares me, but its treatable, so that helps. Hormone therapy looks like what will happen. I need some special eye test this weds, along with the prolactin test for my meds.

Things seem to be piling on top of each other. But I’ve got

THE BLACKEST WINGS

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