Battle Cry

No frills, GIFS, or jokes in this blog, just talking. F

I like to consider myself an open book. 

Honest.

An over-sharer? 

No, I think not.

I can't tell you how helpful it's been to "come out of the closet" and have people confess and connect with me.

I know some of you feel me, and I appreciate it so much when you trust me with your tales and your diagnoses. 

If you don't understand, or care, I don't mind how you label me.

I don't have the desire to spend what little time I have actually feeling well thinking about it.

I find it incredibly important to bring these taboo issues to light.

If you occasionally poke your heads in, out of curiosity, that's ok.

People need to be educated on, or at least brush up against, issues that they aren't familiar with. 

My writings, my sharing, is not to gain attention or sympathy.

It's not for dramatics that I write so personally and honestly about the issues that I do.

I'm helping to break the stigma of mental and physical illness.

I'm breaking the stigma one blog at a time.

One conversation at a time.

One Facebook post at a time.

Helping to break stigmas that shouldn't exist.

These stigmas prevent people from seeking help.

They prevent people from opening up and talking about it --even with family and the best of friends. 

It's nearly impossible to get better if you don't live authentically. 

Your authentic self is made up of your journey, your stories, your obstacles, and your triumphs.

Mental illness is a major part of the lives of many.

The road to stability is wrought with obstacles; acknowledging them and talking about them shouldn't be part of those obstacles.

My diagnoses are: Bipolar 2, Borderline Personality Disorder (BPD), Major Depressive Disorder, and GAD (generalized anxiety disorder,) 

Talking about "it" also lets people that you know, put a face to the diagnosis.

This helps people realize that we are not all "crazy"; even though we are a little crazy

 --at times.

"Woah! I never would've guessed!"

"I had no idea."

Yep, well that's the truth. 

And I'm still the same person you've always known; before I shared this information with you.

All of this is true of some physical illnesses too.

I never saw this coming. 

My decline in health took me completely by surprise and was gradual. 

And I feel like talking about it.

My diagnoses are not complete, but for now are Fibromyalgia and Sjogren's Syndrome.
(the blog I've linked above provides reading materials)

This also helps to put a face to the diagnosis.

This also helps get the conversation started.

In addition, it helps some people get diagnosed and find others to talk with who suffer from the same, or similar, afflictions.

Many people know something is wrong, but they don't know what --they can't pinpoint it.

It takes an average of 6 1/2 - 7 years to receive an autoimmune disorder diagnosis, such as  Fibromyalgia or Sjögren's Syndrome.

Research is still in its infancy.

I've met several doctors who have never even heard of Sjögren's Syndrome.
I've met one doctor in Eureka who is stuck in the stone ages and doesn't believe that Fibromyalgia exists. 

The symptoms are so widely varied that you never would've guessed they could all be connected.

Some symptoms you'd simply never make a doctor's appointment for, or even bring up during an appointment. 

These are life-altering, life-stealing syndromes; and they are progressive.

I used to work out 5 days a week, pushing myself to do cardio for three hours at a time.

I was obsessed. 

It felt good.

I used to have an active social life; I have pictures to prove it  ;p

I love to cook.

I used to make elaborate meals; even if only for myself.

I used to take my dogs to the beach or for hikes.

I moved out at 16.

I've usually held two jobs while attending school full-time.

I've always been busy; but now it's appointments, sorting through bills, and fighting my insurance company to cover the meds I so desperately need.

My life has been altered --drastically.
I wake up most days in excruciating pain. 

I use a shower chair now; and can only shower on low-pain, low-fatigue days.

In my former life I enjoyed showering  2 times a day --at the start of my day and after the gym.

I'm in bed most of the time now; a far cry from my former life.

I can't walk my dogs anymore.

I can't work out anymore; though I do start swim therapy soon.

I can't see my friends as I'd like to.

It's very seldom that I go out for social occasions. 

Most of my days spent out of bed are spent in doctor's appointments.

I can't stand up long enough to cook anymore. 

Hell, I can't even stand in line long enough to pick up my prescriptions.  

Five minutes is too long, too painful.

My joints are swollen, hot, and painful.

My back feels like I fell down a flight of stairs, or got the shit kicked out of me.

I use Carhart gardening gloves with grip in order to grip the steering wheel because my fingers are in too much pain without their assistance.

I can't lay on my side in bed for more than 30 minutes.

My cartridge begins to feel like it's tearing away from the bone in my hips and shoulders.

You know that feeling you get when you're developing, or have, the flu?

I live with that feeling every day.

I'm out of breath a lot of the time.

My body feels heavy; like I'm made of a ton of bricks. 

My energy has been depleted.

Humboldt is one of the worst places to be physically sick in.
I have to seek help outside of the county.
Gas and lodging are expensive; and it's painful to sit in a car for very long.
It is SO HARD to get help in Humboldt.
We have zero Rheumatologists, the kind of doctor that treats my physical diagnoses.
I am now on a letter writing campaign begging some highly recommended doctors to see my despite the fact that "they are no longer accepting new patients."
I was referred to UCSF, who then said that they are inundated with new patients and will not be taking anymore on. WHAT?!?

On the flip side, I DO have a good psychiatrist and therapist here.
And without them, well, they are life savers...
So I do have that.
Though one of my medications, Seroquel, makes all of my muscles twitch and jump.
It also causes me to sleep late into the day.
This was my last resort medication after trying almost every medication that is offered since age 18.
It was my last resort because it's well known for weight gain.

Speaking of meds, they have their downsides.
I feel far less creative.
It's very easy to go off of your meds.
When you are feeling better, you question yourself about why you are taking all these meds, you feel fine!
And then you go off of them.
And then shit gets bad again.
I think a lot of people in Humboldt have a certain opinion of me from my manic days.
I'd go off of my Bipolar meds, feel like a rockstar, and kinda go crazy --in a fun way.
When you're manic, you feel like a rockstar.
You are the life of the party.
You are incredibly outgoing.
You come up with a hundred brilliant ideas, that are rarely executed.
You can end up going on spending sprees and can become promiscuous.
You make lots of friends.
And then, at some point, you crash.... hard; into the deepest depression.
Get back on your meds.
Repeat.

There is something called "Dissociation" that comes with BPD.
This is a state in which everything feels fake.
You face feels fake, like plastic, when you touch it.
You voice sounds fake, and unlike your own, when you talk.
Your environment looks surreal, like a movie scene.
People seems strange, like actors.
You become scared and paranoid.
I landed in the ER during one of these episodes.
I've hallucinated audioally while there that they were going to throw me in the looney bin.
I heard the staff say that they were putting an APB out on my car in case I tried to escape.
This is a really scary state to be in.
And people think you're on drugs.
In the ER staff were poking and prodding at me without asking permission.
Touching me without asking permission.
Because they assumed I was on drugs and didn't deserve to e treated like a human being.
Dissociation sucks and is scary as shit.
You don't feel in control.
Even walking feels fake.

Bipolar is treated with medication and therapy.
Borderline Personality Disorder has only one approved treatment --DBT.
Dialectical Behavioral Therapy.
And I probably don't have to tell you that it's not offered in Humboldt.
It takes 1-3 years to complete this form of therapy in weekly sessions.
You can see why this is a problem.

And still I'm here.

Fibromyalgia isn't deadly.

Though Sjogren's Syndrome can attack your internal organs.

And sometimes, though I hate to admit it, I feel sorry for myself.

All of this is a lot to cope with.

Because of the bed rest I'm isolated. nearly all the time.

Any yet, I'm lucky.

I'm one lucky girl.

I remind myself of this often.

I have some looks.
I have perspective. 

I'm not the poor woman whose face and hands were torn off by a chimp. 

I'm not a kid in the cancer ward; or a parent of one.

It doesn't take much to snap me out of self-pity and thank the universe for how lucky I am.

This is more difficult when the pain is intolerable.

Mental issues are difficult. 

Depression is powerful.

Anxiety is paralyzing.

Physical issues are painful and the outlook is bleak. 

Waking up in excruciating pain is tiresome.

The combination thereof is....ridiculous. 

Constantly fighting to get help, difficult

Isolation and loneliness due to the physical and the mental stuff, worse.  

Life is difficult for all of us; to varying degrees and in varying ways. 

Life is also beautiful.

Though it's a struggle at times to see life in that light when you are suffering.

Though sometimes that beauty is like this drop of color into a bowl of water. It's swirling, and dissipating, you can only grasp at it. You can't put it back into that richly colored drop. At some point the water dries up and the color pigment is left as a ring around the bowl, and some stains on the bottom. The water is gone and you have your color back...for awhile.  

I deal with so many issues it would make many take their life. 

And many, many do. 

It seems that almost every day in one of my support groups another person has thrown in the towel.

It was too difficult for too long.

And they no longer share their ups and downs for that week. 

And my issues are not drama I've created for myself; they are genetic. 

There's no waking up and realizing that the end to my troubles are to stop dating this kind of person, stop drinking, start exercising more, or choosing to disengage with people that aren't good for me.

I've done all that. 

There is no easy fix. 

There's no quick fix.

I've already been dealing for countless years.
The mental stuff became really noticeable in sixth grade.
And it exploded in high school. 

It takes a lifetime. 

These are lifetime diagnoses.

They will always be there. 

It's about finding the best way to cope. 

The best way to deal. 

The best cocktail with the least amount of side effects. 

The best doctors that are the least jaded. 

Suicide is the biggest killer of people with Bipolar and Borderline Personality Disorder. That's true of Fibromyalgia too. 

I'm incredibly lucky to have supportive parents. 

I'm incredibly lucky that they fight my battles with me. 

All of this would be unmanageable on my own.
It's barely manageable most of the time; even with the love, support, and acceptance I have from my family.

And there's such a stigma. 

You can't talk about it if it's mental.

You can't talk about it if it's physical either. 

You are either an attention seeker or you are dramatic. 

Nobody has ever said these things to me......to me.

But that's how it feels. 

And that's how people who don't truly know you think....I think.

And I can handle judgment; because I don't handle it. 

I'm impenetrable and forgiving of fools.

I've come too far to let anyone else tear me down. 

I've lived a lifetime full of mistakes; but this is no longer one of them. 

I can't even imagine what my life would be like if I didn't have support from my parents.

If I still had life, it would be on the streets most likely. 

Without family support people like me end up on the streets. 

I wake up in excruciating pain after sleeping in a comfortable bed. 

I can imagine how much physical and emotional pain some homeless people are in. 

And it hurts. 

Just to think about it hurts. 

Nobody is exempt of that possibility.

But some are far more likely to end up there.  

It's still SUCH a BATTLE to get treatment for the physical stuff --especially in Humboldt.

Even with Blue Cross.

Even with money for the co-pays.

Even with my own reliable transportation. 

Even with caring parents that advocate for me to the best of their abilities. 

I'm cursed and blessed. 

Yin and Yang.

The darkness within the light.

The light within the darkness. 

But that little drop of darkness can be blinding.

And that little dot of light can seem so dim. 

And when I'm doing better I'm going to give back somehow. 

When I'm doing better I'm going to help those that have similar issues as me; but don't have the support that I do. 

When I'm doing better I'll be happy. 

Happy in all its brilliance.

Happy in stark contrast to the drop of color swirling in the bowl of water.

One day I will be in a place to help others.
For now I struggle with extreme pain, isolation, boredom, and a lack of help.
But I hope that will changes someday....soon.

My current book-of-the-moment:

My dad bought me a wheelchair so that when I am feeling well, I can get out and enjoy whatever is happening around Humboldt. I pimped the shit out of it! Gold betches! 

Here are a couple YouTube links on some videos about Borderline Personality Disorder:
Video 1
Video 2
Bear in mind as you watch these, that everybody is different. And I'm not giving my account in any of these videos.

Here's a video on Bipolar Disorder. It talks about Electroshock Treatment; something i've been seriously considering.
Video