I need your stories

On Thursday, I will be speaking at a rally against the American Health Care Act.  I am going to center my remarks around the Mental Health Community, because let’s face it, it’s what I know best.

What I’m asking for is your stories about how the Affordable Care Act a/k/a Obamacare has helped you or someone you know with regards to Mental Health.

You can leave them in the comments, but if you wish you may also email them to me at normalisoutthere@gmail.com.

I assure you that no names will be used.  I’m trying to get a bead on the kind of help people have received through the Medicare Expansion or any other way in which you were able to get insurance.

Thanks all!  I’m soooo nervous to get up on that stage!!!!

 

Even Duct Tape gives out eventually

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I got in the way way back machine to pull this post out and re-present it to all of you.  This was during the disability fight and only my 3rd blog post ever.  But, I really like it.  I hope you do, too.

The diagnosis of Generalized Anxiety Disorder and Bi-polar disorder has changed my life in very profound ways.

I’ve been thinking a lot about the person I used to be; the way I worked at my job, the way I interacted with my friends and with strangers and just generally the way I dealt with life.  Not only have I been considering the who I used to be, but also how that compares to who I am now.

I used to be a real estate professional.  I worked as a licensed title insurance agent in the Commonwealth of Pennsylvania.  If you have ever purchased a house, you know title insurance even if you don’t realize it.  I sat at the head of the conference table, making sure paperwork was filled out properly, making sure the money was distributed properly and problem solving, problem solving and more problem solving.

The old me multi-tasked.  The old me was detail oriented.  The old me finished what I started.  I dressed for work, wore my high heels, did my makeup (sometimes), did my hair and bolted out the door in order to be at work early.  I was heavy, but not too heavy to dash around in 4 inch heels.

During the last few years of this I started to see a therapist.  I didn’t want to, but my doctor really wanted me on anxiety medication, which I REALLY didn’t want.  The compromise was a therapist.  As I look back I am thankful that I had such a good relationship with my doctor.  If I hadn’t liked him or didn’t really respect him, then I probably wouldn’t have started therapy.  Starting therapy when I did is probably what allowed me to hold on for as long as I did.

A few years after beginning therapy I moved to a new job.  The economy was doing poorly and the real estate bubble had burst.  Business was hard to come by.  I was laid off from my old job, but thankfully was able to find this new one.  Less money and less to do, but at least I had something, which was more then some people could say.

And then I had my first nervous breakdown.  In my case, as is the case for a lot of people, the last straw was something ridiculous.  My favorite radio station had started playing all Christmas music all the time.  Thanksgiving was still 4 days away.

I spent a week in the psych ward.  I spent 2 months in intensive out-patient therapy.  I quit my job.  I couldn’t work and do the therapy necessary at the same time.

My husband and I had decided to move south.  I needed a calmer, slower paced environment and he needed a job with a future.  We both needed more sunshine.  I found a job in retail.  Much less stress, and as a result, much less money.  But, the much less stress was worth the lower paycheck.

But I still broke.  Not a lot.  Not enough to need inpatient hospitalization, but enough to have to leave my job.

And then, I broke again.  All the way.

I spent another week in the psych ward.  The doctors tweaked my medications and sent me home.

I started experiencing days and days of mania.  It frightened me because it had never happened before (well, it had, I just hadn’t known that was what was happening).  I had so much energy I could have run a marathon.   But I couldn’t focus that energy enough to even clean the kitchen.  That’s when the Bi-Polar was diagnosed.

Now, there is a whole new me.

The new me can do only one thing at a time.  The new me has a hard time with the small things.  The new me bounces from task to task.  And, the new me is always tired.

But who’s to say that the old me was the better version?

Even just sitting down to write this blog is a learning experience for me.  While taking a break from writing, I realized that I had been in the middle of emptying the dishwasher when I decided to sit down and write.  How I had just managed to walk away from what I was doing and start doing something else is kind of mind-boggling for me.  But, it’s also becoming a pattern.

I can’t work at a job outside the home.  I need to rest too often and my moods are a crap shoot each and every day.

I recently saw a psychologist for testing to see if a job is even possible.  He tested me for concentration (I’m on the 2nd day of working on on this blog entry), memory, task completion and a few other things.  His opinion is that the last time I broke, I broke thoroughly and completely.

It was a devastating blow.  I spent a week so depressed over the results I could barely leave my bed each day.  It physically hurt.  It could be years (and probably will be) before I am able to be certain enough of each day’s mood to venture out on a regular basis.  Or be able to concentrate long enough to spend a few hours working at a job.  I need to be able to rest a couple times an hour.

I’m not over it.  Not by a long shot.  I’m used to working, to contributing to the household income.  To feeling useful.

But, I’m on my way to accepting it.  It’s taking a lot of support from my husband and my therapist to get there, but I’m trying.

We moved here for the slower pace and I am trying to embrace that.  I clip coupons and have been able to save a lot of money on groceries.  I cook most days and have started baking.  I have a garden.

My new activities have rest periods built in.  They are slower paced activities.  I spend a lot of time in the grocery store, because sometimes I just have to sit down for a bit.  But, I get it done.  My savings are my contribution to the household income.  My garden provides not just a therapeutic activity, but free food for the home.

I yearn for the old days of working and feeling useful, but I am finding other ways to be useful.  Being present for my family is good.  When my grandfather was reaching the end of his life, I was able to be there and spend time with him, for which I will be eternally grateful.

The way I was doesn’t matter anymore.  It is a fond memory, but I am also starting to see the deep cracks that have been present for a very long time.  I filled them with chewing gum and duct tape, but even duct tape gives way eventually.

Now I’m picking at the cracks trying to see where they lead and trying to fill them with something more substantial then chewing gum.  I’m trying to fill them with understanding, knowledge and acceptance.

I have a very long way to go.  But, for better or worse, the old me is gone.  She is a tool for me to use to understand the new me.  But, I will never be her again.  Accepting that, and figuring out who I am now is what matters.

It reminds me of a joke Steven Wright used to tell (I know…you young’uns have no idea who that is) about how everywhere is walking distance as long as you have the time.

I have the time.

Peace and love.

Well, this is new

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Today was my disability hearing.

I was terrified.

My attorney had me to his office last week to explain what would happen, what would be expected of me, how to dress, how to address the judge and the role of the Vocational Technical Analyst.  I hated that analyst from the moment I heard about him.  He listens to the testimony and then the judge asks him, based on a “hypothetical” patients symptoms and needs, what work is available for that person in the marketplace.  “Button Sorter” tends to be a big one around here.  I don’t know why.  I don’t think there is a button factory anywhere local.

I spent the weekend frustrated, agitated, anxious, depressed and generally annoyed.  What was I going to say?  How was I going to explain this mess of mental illness in a way that would satisfy the judge?  I soon realized that there was no way I could prepare.  I wasn’t allowed to bring notes with me and any speech I crafted would be forgotten by the time I would have the opportunity to give it.

So, I chose to have faith in my attorney.  He said that if there was anything I missed or anything he thought I should cover more fully, he would ask those questions on redirect.

So today my husband and I went to the Social Security building for the hearing.  As I began to speak, things got a little easier.  Yes, I can give an example of rage.  Yes, I can give multiple examples of my forgetfulness and lack of concentration.  Yes, I can talk about my need to isolate when rage or depression or unwarranted sadness reared their heads.  Yes, I could talk about my inability to get out of bed because of depression, my ultradian cycling and the side effects of my medications.

Then the moment I had been dreading.  The Judge gave the Vocational Analyst the problems of that “hypothetical” patient (that patient we all knew was me) and asked if there were any jobs in the American Job Marketplace that this patient could do.  And the answer was an immediate “no”.

????

I think that means I win.  They can’t deny me if there are no suitable jobs for me right?

Right.

It’s not official, it won’t be for at least a month or two, but I won.  I freaking won!  Two years of stress and feeling less then useful because I’m not bringing in any money was over with that “no”.  My attorney confirmed that the judge told him she would be approving my claim.

There is a monumental weight that has been taken off my shoulder.  There will be no more obnoxious denial letters from the SSA.  There is no more fretting that I’m not contributing financially to our home.  And there is no more waiting for and working towards an uncertain goal.  It’s done.  I’m free.

What this has also done is freed me with my blog.  It has freed me on Facebook.  I can talk about my life.  I can talk about my struggles.  I can advocate, which is something I desperately want to try to do.  And it’s ok that it’s my real name out there.  I have changed to my real name on this blog.  I have changed my Gravatar to a picture of me.

My name is Leslie Bracken and I have Bipolar Disorder 1, Generalized Anxiety Disorder, Panic Disorder with OCD tendencies, Panic Disorder with Agoraphobic Tendencies and Borderline Personality Disorder Traits.

And this is what I look like.

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Me and Earl

 

Thank you to all of you for your support during this long and arduous journey.  For those of you currently in this fight, do not give up hope.

 

 

 

Earl

We adopted Earl from the SPCA near where we used to live in Pennsylvania.  Hubby picked him.  I had walked by him because of hubby’s dictate “Nothing with long hair”.  But something in Earl’s eye’s (known at the SPCA as Benji) sparked hubby’s curiosity and he stopped to pet Earl.  Once he was shown that immediate unconditional love from Earl, hubby was hooked and soon we were driving home with him trying to think of a name that was better than Benji.

Earl had lived in the wild for a bit if the condition of his coat and his pungent smell were any indicators.  Vets soon gave us validation for our assumptions.

Earl had almost certainly been abused.  His reaction to a straight-on head pet was to duck, but he came out of it after some time had passed.  He realized that we were only there to pet him and cater to his needs.

And we did that for 9 years.

Over the last year he’d been having recurring ear infections, attributed to allergies.  Sometimes the infection would spread to his skin.  He had all of the other hallmarks of allergies, so we gave him an allergy pill each morning with a host of different things to squirt in his ears to keep things at a dull roar.

Three weeks ago his pill fell out of the treat.  It happened sometimes and I did what I always did.  I opened his mouth to toss that little pill in.

And he freaked out.  In pain.

Distraught, I called the Vet and went right in.  My worries of a bad tooth were put aside as the Vet felt swelling.  But, then his ear started to bleed.  A lot.  Concerns of an abscess that had ruptured from the stress of opening his jaw got me a load of antibiotics and a steroid to take home for the weekend.  Re-check Monday.

Re-check showed no difference.  Referral to the Specialist  Clinic for a CT Scan was ordered.

I knew then.  Somewhere in the back of my head I knew that Earl’s doctor suspected a tumor.

We had to wait until Friday to see the Specialist Vet.  They were so nice.  I was escorted to a special waiting room for people who are going to be there all day.

The first update I received was that the ear had started pouring blood when they tried to take his temperature.  So looking in the ear wasn’t an option.  CT Scan it is.

My final update was the word I was dreading.  Tumor.  It was followed by “Lymph node Involvement”.  “Cancer” I said knowing how bad it was that the lymph node was involved.
“We took samples, we’ll know more tomorrow”.  I got bottles of pain pills and went home with my dog.

Saturday he wouldn’t eat.  I went to the drugstore, obtained a syringe, crushed his pills, mixed with a little water and shot it into his mouth from between the teeth.  Once, that dose kicked in he ate a little.

Hubby and I had a long talk.  If it wasn’t cancer, it still needed an operation.  As it is, we’ll be paying off the CT Scan for months.  To think what the cost of the operation would be was completely daunting.  And, Earl’s age factored in.  We don’t know exactly how old he was, but he was at least 10.

Then the specialist called.  And all of our “what can we do” talk went out the window.

Cancer.

In his ear and through the bone towards the jaw with lymph node involvement.

Devastating.

We don’t treat cancer.  It’s a pledge we made long ago.  Chemo and radiation effects dogs like it does humans, but they don’t understand.  Also, the cancer often re-ocurrs once treatment is complete.

So, we bought him McDonald’s.  Hubby fulfilled his normal actions when he gets McDonald’s at night and fed Earl french fries and burger pieces.  I hid pain pills in chicken mcnuggets all day on Sunday at double the dose to make sure he was definitely comfortable.

At 9:00 am on Monday my baby went to the Rainbow Bridge to play with his brother Simon until hubby or I get there.  It was humane, it was peaceful, it was kind.  It was devastating.

Today I received a card from the vet.  He wrote, in part, ‘Rest assured you did everything possible and that in the end your decision was both kind and correct’.

That card means so much.  I’ve been second-guessing myself quite a lot.  But, in my heart, I know that he hadn’t been acting like himself for a couple of weeks.

When I went to the Speciality Clinic I saw a poem that, somehow, I knew I would need soon.

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At leisure

 

I thought of you with love today, but that is nothing new

I thought about you yesterday and days before that too

I think of you in silence.  I often speak your name.

Now all I have is memories, and your picture in a frame.

Your memory is my keepsake, with which I’ll never part

God has you in his keeping

I have you in my heart.

 

 

Depression again

Here we are again.  Depression Alley.  Depression Lane.

The Pit.

I miss the ultra rapid cycling and the little bit of ultradian cycling that I had going there for a week or so.  Yes, there was depression, but, OH the bursts of energy!  Of course, I’m looking back through rose-colored glasses, but they’re all I have nearby and I don’t have the energy to go look for different, more honest frames.

So pdoc put me on Trintellix.  Figured it was just a matter of time before she got me back on an antidepressant.  I really don’t tolerate them well.  Sometimes they actually make me more depressed.   When she asked me which ones I had taken in the past (before I started seeing her), I listed a bunch and then quit and said ‘All of them’.

Because it’s almost completely true.  All of them.

But, yay, they invented a new one, so I guess we’ll see what happens.

I received a letter from the disability lawyer today confirming the date and time of my hearing and requesting a pre-hearing meeting.  Yes, I’ll be going to that.  They also needed two Social Security forms filled out listing my work history (for the 5th time…it hasn’t changed) and my current medication list (which has changed substantially).  I can’t wait until this is over.  The weight that will be lifted off my shoulders is large.  I will finally be contributing to the household bills again.  It’s not much, but right now hubby is supporting 3 people and it’s getting to him.

And, of course there’s politics.  I realized this morning while I was talking to my therapist, what triggers me so much about Trump.  He speaks to us like we are naughty children.  We’re not allowed to explain ourselves, or why we think the way we think, we’re just wrong.  Always and forever wrong.  Agree or be wrong and exiled.

So very Presidential.

So, that’s it for now.  Hopefully all this makes sense, because I don’t really have the energy to go back and edit it.

Peace and love to you my lovely followers.  This blog wouldn’t be what it is without you.

Knowledge is power but it doesn’t feel like it.

This is a reblog of a post from almost 2 years ago. My therapist and I have talked about the need to mourn the person I used to be, and accept (even if I don’t like it) the person I am now. I’ve been having a lot of problems with that because several doctors have pointed out that I was very depressed even back to my teens. They think that because I attempted suicide at 14. So, who exactly am I mourning? I’m mourning the person I describe here, pre-diagnosis. The person with energy. The person who used the coping skill of work to run through the mania and stave off the really dangerous parts of Bipolar 1 mania.

I also think this is a nice post for the newly diagnosed. Trust me, none of us wanted this. Now, we just need to find our way through. ❤

Normal is out there

My diagnosis of bipolar is relatively new.  Well, very new.  No one really started throwing that around as a potential diagnosis until after my last nervous breakdown in October 2014.  Before that, I had been holding steady with my nice little generalized anxiety disorder and panic disorder diagnosis.

I thought me and my GAD and panic disorders had a nice relationship.  I knew they were there, I was used to them and occasionally I felt free from them.  I had days where I had lots of energy and got so much accomplished.

But the meltdown of 2014 changed all that.  Suddenly everyone was talking about bipolar disorder.  Well isn’t that the same thing as manic depression?  Does this mean I’m a maniac?  Now, these bouts of energy were being looked at with suspicion.  Ok, yeah, I would get really tired and down after periods of all this energy, but that…

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Protesting through Panic

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My anxiety is in control again.  I suspect a touch of hypomania is underneath, but I’m not sure.

The current political climate, that just won’t seem to settle down, is definitely a culprit.  There are so many things that I’m furious about, I could start a political blog and have more than enough material for the next four years.

But, I’m not going to do that.  I’m going to give you a taste today, but just a taste.

I have found some of my power.  It has come through the absolute last thing I ever expected….protesting.

With an anxiety disorder and a panic disorder with agoraphobic tendencies, you would thing that hanging out in the middle of a large crowd would be one of the last things I would want to do.  But, when the Women’s March in Washington spawned a Sister March in my hometown, an excitement grew in me.  I had wanted to go to DC to be honest.  But I talked myself out of it because of the crowds, being alone (in the crowds) and taking the train and then finding my way from the train station.

So, when the Sister March was announced, and that excitement grew in me, I decided to go.  I clicked the “going” box on the Facebook page and then I sat back and wondered what I had gotten myself into.

But, it was close to my home.  I could drive there.  If I freaked out in the crowd I could just go get my car and come home.  I could hang out on the fringes once the march reached the park and became a rally.  I could do this as long as I planned it out very very carefully.

I made my sign.

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Let’s face it.  All of us are more than the labels thrust upon us.

I left the morning of the march and drove downtown.  Parked my car at my designated spot and, with a lot of trepidation, went to meet my fellow marchers.

What happened next was something I never expected.  Rampant kindness.  Blind acceptance.  Just the fact that I was there to march meant that I was family.

We marched in the rain and we encountered support the entire time.  From a gay couple with their child cheering us on from their porch to the cars passing and honking.  It gave us power.  It gave us validity.

We rallied in the park and I walked around looking at the signs other people had made.  I spoke to a woman who was a little sad.  She had marched for Women’s Equality in the 60’s, she never thought she’d have to do it again.  A man was pointed out to me, who I sadly was not able to speak to, as he had moved by the time I heard his story and I never found him in the crowd again.  But. he was in his 70’s.  He was there alone.  He had never protested a day in his life, but he thought this was so important that he came anyway.  Imagine that.

As the speakers began, I found that I had ended up directly in the center of the crowd.  And I also found that it was ok.  The intensity of the speakers, the fact that people talked to me and the general solidarity of the crowd put me at ease.  Anxiety dissipated.  Agoraphobic tendencies stayed in their bed inside my head.  For an hour, I felt peace. This was a pure peace.  Something that I literally haven’t felt in I don’t even know how long.  But, somehow, out there with those women and men and children, all of us wanting equality for women and LGBTQ’s and blacks and browns and disabled,  I was able to find peace.

I think that it was because I realized finally, that in real life, I wasn’t alone.  Other people wanted the same things as me.  And they were willing to brave whatever their fears were to get out there and fight.

I’ve been to one other protest since the Women’s March.  The feeling was the same.

I will be going to more.

I will be making my voice heard.

And I will speak for those of you who cannot raise your voices yourselves.

Labile Moods

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So, I’m having some issues with the whole labile mood that goes along with bipolar.

If you caught my post Not doing very well or Well, this sucks you already know that anxiety and depression have been kicking my butt.  I’ve been on a new medication called Tenex, which is for ADHD (which I don’t have) and it has a side effect of reducing anxiety.  The anxiety part was crap.  It didn’t work.  I relied on my 2 10mg Valium each day to reduce the anxiety, although even that did work all the way.  And that’s a LOT of Valium!!!  The one thing the Tenex did do was give me some focus.  The kind of focus that allowed me to get some stuff done.  Not a lot of stuff, but stuff.  And that was good.  Although I was still horribly anxious.

But, then the anxiety just popped.  One moment it was there, and (I mean this quite literally) the next it was gone.  The anxiety left, but it took more of me and sent me into an immediate depression.  I was freezing, my body ached all over, anything anyone said or did angered me, and God forbid I ask a question and the answer was “I don’t know”.  That really didn’t work for me.  My family was concerned, probably a little angry, and very confused and I couldn’t really help them because I was in despair.  That energy I had hated so much was finally gone, but it had left a deep hole in its wake and I didn’t know how to fill it.

The tools in my coping tool box were forgotten, only to be remembered now as I’m typing this post.

However, today I’m on my way back up.  I’ve gotten a few things accomplished and spent more than a little time today chasing my tail, forgetting what I was doing but finding another task and then another and not making it back to the original task until a good deal of time has passed.  That’s assuming I ever remembered the original task at all.

I don’t want to climb back up.  I’ve already climbed beyond “normal”.  I may be going hypomanic.  I’m terrified that I’m going back to that horrible anxiety.  I may even be getting ready for the ride known as ultradian cycling, which, if you’ve been there, you know how awful it is.  For those of you who don’t know, ultradian cycling is when you experience multiple mood shifts within the course of a day.  I know from experience that it is not fun, it is horrible, and I don’t want to do it ever again.

As I write, I can feel that upwards cycling.  I, unlike some other bipolar sufferers, do not enjoy my hypomania.  For me, it is excess energy that has no outlet.  I lose focus, I lose my temper.  I feel like I’m losing my mind.  Some are fortunate enough to be able to channel that excess energy into creative endeavors and I’m jealous of that.  My thinking process becomes very sketchy, very non-linear, and my OCD tendencies are at their worst during hypomania.  Even as I write this, I’m starting to have trouble keeping my thoughts moving in a productive direction.

Good news is that I see both the P-doc and the therapist tomorrow.  I have to remind myself when I’m at the P-doc that it’s a 15 minute appointment.  I have to stay on task.  I have to talk about my moods and how they generally affect me.  It’s not that she doesn’t care, it’s just that we don’t have the time.  Therapy is where I receive the ability to go “stream of consciousness”.  That’s where I can tell my stories of how hard things have been.  I literally don’t know where I would be without my therapist.

My disability hearing has been scheduled for March.   Should everything go the way I hope, I will be able to change this blog to one of education, stigma-prevention, and action should it be necessary with our new administration.  To that end, I am going to go back over a lot of my posts and mark the ones that directly involve my family to private.  But, I will go public, under my real name, with a picture of my actual face and we will take this world by storm.

Meanwhile, I’m going to try to go not pay attention to these moods of mine.

The Spoon Theory

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Are you looking for a way to explain how hard your days are because of your chronic illness, whether it’s mental illness or physical illness?

I know I have been, for a very long time.

Maybe for some of us, this will be a way to do it all the way, or at least get the conversation started in the right direction.

 

But you Don’t Look Sick

 

Really, I highly recommend it.

Well, this sucks

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The anxiety is mostly gone.  It popped just like a bubble.  One second I was so anxious and the next second….depression.  I could almost hear the bubble pop.

I read a comment on Facebook that was so rude and belittling that I guess it just slammed my brain into a different gear.

But, depression?  Seriously?  All that energy left my body in a second and took with it more than it was allocated.

This depression is rough, too.  It’s not that mild version that we have all become so adept at faking our way through.  No, this is lower.  I couldn’t care less about anything right now.  Even this blog post is hard to write, but I’ve committed myself to being here more and on Facebook less.

Some of this is mood, but some of this is triggered.  The last 16 days of the Trump Presidency has been hard on a lot of people.  And not just the people directly impacted by the things he has done.  The majority of this country is afraid, worried, anxious and on high alert.

Couple that with Bipolar or Generalized Anxiety Disorder and it’s a recipe for disaster…or at least big problems.

And while disconnecting from what is going on is a good idea, we can’t hide our heads in the sand for forever.  Because what if we are the next group targeted and we don’t even know that it has happened?  We all know enough about Mental Disorders to recognize the Narcissistic Traits in our President.  We must be vigilant.

But we don’t all have to be vigilant all the time.  Because, the information will be here.  If not on my blog, then on someone else’s.

So, for now, I’m going to try to make myself do a couple of things that need to be done.  After that, maybe a nap.  I’m just so damn tired right now. I shouldn’t be, but I am.

That’s the depression.