Life As A Headcase: Doctor, Doctor…Breaking Up Is NOT So Hard To Do

This is a post about me and my doctor.  However, as weird as this may be it starts off with the story of my migraines but bear with me, we WILL get to the actual message of this blog…just hang in there and trust me.

Besides everything else that is going on with me, I also suffer from Chronic Migraines.  I don’t know why this is…does anyone ever know what causes a migraine?  Well, seriously, I guess some people can tell you what triggers theirs but I am not so sure anyone really knows what causes them.

Or even how they feel or how they present.

My migraines happen about 4 days a week.  My neuro was very conservative
and gave me 15 Fioricet pills a month.  That’s one every two days or estimating a month containing just 15 migraines.  With 4 headache days a week, my month has about 20 migraines.  This caused me to hoard meds because I was always so afraid I’d run out JUST when I needed it.  He also prescribed compazine for the accompanying nausea.

Still with me, because now we are at the heart of the matter…I told
you we’d get there right?

Now here comes the rant (because you knew there WAS one right?)  I had to
choose a primary care doctor so I picked one I didn’t know simply because all the ones I DID know either didn’t take my insurance or weren’t taking new patients.  So I picked a guy I didn’t know but who was in a practice and could see me in a closeby office on Wednesdays (the day I can get a ride.)

Well, yesterday I saw him.  While I was in the hospital, my treating psychiatrists and doctors (yes, GPs) prescribed a couple new things (Abilify, Remeron) and changed a few things (Klonopin to Xanax and upped the Fioricet/Compazine cocktail to one time a day when needed.)
So here I am, going to see Dr. Pompous Ass.  He didn’t get this name until yesterday but boy, he earned it.  I get why he said what he did by the way.  My rant is more about his attitude.  Dick.

Anyway, I gave his nurse all my paperwork with all my new meds.  Dr. PA walks in and says, “I don’t want to deal with all of your meds.  I only want to deal with your regular meds.  Your shrink can deal with your happy pills.”  Then he started listing them.

After feeling like the biggest hypochondriac EVAH or at least a simulated medicine cabinet for the entire Israeli army, he concludes he won’t deal with my Lamictal, Compazine, Fioricet, or Remeron.
Well, for your information, Dr. Pompous Ass, the Lamictal is for seizures, the Compazine/Fioricet cocktail is for unrelenting headaches that I actually came to YOU for several months ago despite the fact my neuro had at ONE time prescribed the combo for a post lumbar headache I got.  And…the Remeron, it’s not for depression, you ass, like I told you, and like I have asked you for for months, it’s prescribed so I can sleep longer than 2 hours at a time.

Idiot.

I am not even sure he put these back on the list but he treated me like I was a head case (okay, I am but I don’t need to be treated like one) and was actually rude.  Scott was there and he thought the dr. was a pompous ass too.

I mean I get why he’d want my shrink to handle the cocktail of happy meds I am
on (I counted, I am on four altogether so its not like I am on some ungodly number) and that was fine.  I am NOT fine that he won’t deal with the others so…

We broke up.

I haven’t told him yet since I have to see my new doctor first and that won’t be until August 27.

Don’t burn the bridge that renews your meds, right?

On August 27, Evan and I are changing to a really nice doctor who is a woman
(yeah!) and who also has a specialization in pediatrics as well as family meds.  This should be really good for Evan since she’ll be able to understand the autism and how that affects him.  I think that will be a win win for him and for me.  I am not sure how she’ll handle my head case but I am confident that it HAS to be better than what I am getting now and even if it’s the same…I KNOW it can’t get worse.

The whole thing pisses me off but I don’t have a great rapport OR history with Dr. Pompous Ass so changing now is the right time.  Also, this doctor is affiliated with the hospital I go to and I plan to hook her up with my shrink with a release so they can share information.  As long as she deals with all of my OTHER meds I have NO issue at all with her passing the pipe of my happy meds to my shrink.

I just want what I need and what has been prescribed to be respected and
handled properly.  I want to be respected and treated with dignity and not treated like I am asking for something that I am not actually holding paperwork to show you it has been prescribed for me.

Let’s hope this works.

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Life As A Headcase: Out of the Darkness

I am really sorry that my last post scared people (I have to admit, I was pretty scared too!) but I appreciate the concern you all showed. Yes, it WAS a bad situation but not to worry…I have very qualified and competent professionals who care and who DID care for and about me.  I have collected the very best Circle of Trust around me and they lifted me up through the terrible time I went through.

Yes, if you feel as low as I did…call for help.  Call your friend, your bestie, your mom…your therapist.  Call 911.  Call a helpline.  Whatever you do, call.  I probably should have done that and believe me, it’s in my speed dial now.  All of my circle is in my speed dial.  I only have to hit it.  Someone will answer to help.

It would have helped.

In the long run though, I am better than ever.  I feel confident and empowered.
My meds are JUST right which hasn’t been the case for TOO long as I switched between psychiatrists – my latest waiting 12 weeks between dosage changes and med changes and that was too long.  If that happens again, I have the tools to know what to do.  I won’t like losing my therapist but then again, I don’t want to lose me either.

For the first time ever I can tell you, I love this girl.  And she means the world to me.  And I will do what I have to do to keep her safe, empowered, happy and protected.  Go into debt, act silly, whatever.  Her happiness is my goal. So don’t worry, I’m back. I hope you’ll stay with me.  As I said to my therapist, Shrinkette, I promise I will
ask for help WAY before I need it.

To paraphrase one of my favorite Ghostbusters, Winston Zeddemore, I have the tools and now I have the talent.

I journal OFFLINE and that journal is just between me and my Maker.  I have a Circle of Trust and have taken GREAT measures to emulate my Howard-Hughes-like son who is obsessed with privacy as far as my facebook is concerned.

It took a long time to decide if I could continue my blog but I think it’s important for many people and in many ways.  Maybe it IS a freak show that folks like to see.  But maybe someone has BPD too and maybe some of the things I have said and plan to say will help.

I am here to be helpful.  But the best part for me is that I AM HERE.

 

This post has also been crossposted on my blog located at BlogHer.com.

Life As A Headcase: Frustration

I love to use websites for inspiration for my writing, especially when I can’t seem to come up with anything I think is worth writing.  My favorite site is Thoughts From The Blue Notebook and today’s topic deals with frustration.  Which…I guess is a good topic for me because Frustration is a great friend of mine.

Back that one up, maybe not a great FRIEND but due to my physical issues, it is a constant companion.

Frustration comes to visit right along with the Darks.  I feel down and I get frustrated because it makes me feel inadequate, lazy and whiny.  I am afraid I am getting a reputation as a hypochondriac because I have so many things on my health plate.  I get myoclonic seizures which annoy the hell out of me.  Imagine having your reflexes tested non stop for minutes or even hours!  And there’s nothing I can do to stop it except take medication that I often run out of if I have a particularly bad month.

Frustration is there beside of me.

I want to take my son to the book store, have a mocha latte and read a magazine on home remodeling.  I can’t because I have seizures and my license has been gone since September.  I am optimistic though that I’ll get it back but Mr. Frustration mocks me now.  And the time drags.

I think time and Mr. Frustration are close, personal friends…or just in on this together.

I’m content and happy with my life but I have this part of me that longs for the
magical recreation of those happy moments in my life.  It’s like this part of me whom I call The Little Dreamer Girl wants to collect all the happy she can so we can just fall into it and roll around naked.  (Okay TMI, I know but that’s what it’s like).

And very often this quest to bring me baskets of happy blows up in her tear stained face because like a cat bringing home a dead rabbit, only to make it’s owner happy, other people don’t really understand what she’s all about.  Hell, I hardly understand all these parts of me.  How can I expect anyone else to get it.  And when they don’t get it, how can I even explain that it’s not ME doing this.  It’s Little Dreamer Girl and I really have a hard time stopping her from gathering those happy things and bringing them home.

Frustration holds her hand I think and I wish she’d quit going off with him.

Frustration digs deep into my soul, what little I have left, when old friends won’t talk to me anymore.  When people I thought would be there forever don’t want anything to do with me.  And especially when they stop by and say hi never to return. Frustration exacts his revenge and takes his pound of my flesh and blood, and mind, and runs, cackling into the darkness.

Frustration is a contant in my life.  Not MY constant (ala LOST) but constant enough that I am not surprised anymore when I feel his presence.  I just try to remind myself that Frustration comes and goes, although at his own whim.  I never know when he’ll show up or even when he’ll go.

He knows of my neshamale’s (Little Soul in Hebrew) deep connection to Israel and Jerusalem and he sits by the sidelines taunting me, enveloping me in sadness and homesickness, and making sure I know it will never be in my grasp again. He plays with my life like tinker toys.  Some days he let’s me be built up and other’s he pulls me apart.  His exaltation comes when there is absolutely nothing I can do, when I feel completely overwhelmed, powerless and empty.

But that’s how Frustration is.  And sadly, I have to learn, somehow, to live with him.  He will always be there and somehow I have to find a safe place and never let him win.

Fireside Chat With The Autism Mom: Life After the Autism Waiver

My son, Evan, is 21.  We were out of the country immediately after his graduation from high school which was an incredible experience.  I have to tell you, Israel is DA BOMB for autism services.  There are services for babies, little kids, big kids and adults.

TONS OF SERVICES!

So many services that they apologize to you for not being able to get your kid into a group home (if they so choose) for 6 months to a year.

SERIOUSLY???

In the US, you’re lucky to have a multi-year wait much less the blink of an eye that is a year. We really appreciated the services there but…all good things much come to an end and we returned last March for various reasons.

I got Evan back into therapy again at the John Merck Center here in Pittsburgh that specializes in autism spectrum disorders and their treatment.  Then I got him back with his case management service that helps provide various services he needs.  Unfortunately, the state cannot provide adequate services to everyone who needs them.

You know the drill…there are other children more severe than your child, yada yada yada.  So we got limited funding which would get him a community aide for a few hours a week and at least get him out of the house and into the community. This was especially important since I was having seizures (and still am) and lost my license last September.  We live in a pretty happening area but you need wheels to MAKE it happen.  It’s kind of disappointing to me to miss out on it all (although since I am agoraphobic it’s really not as bad as I make it sound – I’m all “big dog on the porch” though, to talk about it!)

Evan feels so isolated because in Israel we were in Jerusalem and it was like paradise. He figured out the bus system and with his monthly bus card, he could go anywhere the buses or light rail went, including school which made him so much more independent.  He knew the bus system so well, when stranded at the mall by a visiting friend, he called and told me he had it covered and walked in the door 20 minutes later. He could shop on his own, buy iced coffee (an Israeli treat and very unlike the US version) and generally do the weekly shopping if asked and given the credit card.  He was Mr. Jerusalem and absolutely blossomed there – including becoming fluent in Hebrew!

But now we’re home and there aren’t any buses and so he does feel kind of trapped.

Well, I was informed by our case manager that some full waiver slots were coming open.  What that would mean is that Evan would have $30k to use for aides, supported work situations, camps, programs and other goodies we can’t even begin to imagine.  When we had the original money for the aide for a few hours a week, we couldn’t even find an organization that could provide a local aide or even an aide close to Evan’s age.  We had used the services before Israel and basically he would go out for dinner and an evening at Barnes and Noble with a kid who probably couldn’t get a better job.  That discouraged us this time too since we wanted someone local to keep him in touch with his new community but also someone closer to his own age (they sent a grandma once) who could be more of a buddy and not so obviously an aide.

Once I heard full waiver slots were open, I started my campaign to get them for my son.  I called everyone I could think of, including the county social worker who would hold the determination conference, and begged.

I talked about my epilepsy and how my inability to drive really limited Evan’s life. I knew he was on the list but I didn’t know if he’d make the cut.  After all, they were reviewing ALL the individuals, some older and some younger, and some with greater need.  It was a crapshoot whether we’d get funding or not but I made sure I brought his case before the right people and fought the good fight.

And…he was the first to receive waiver funding this year. What this means is that he has this funding for life.  FOR LIFE!  Unless we move, of course, which I don’t think we would even consider unless we went back to Israel but I don’t see that happening except for vacations. He has 25 hours a week of aides who come to take him out, play basketball and do artwork with him.

It’s overwhelming actually to go from zero to 100 mph in such a short time period but I can see, while he is tired and a bit overwhelmed, he is happy. He gets to go to baseball practice and play on another league he wanted to join.  The girls who are his aides are his age and they play basketball and catch and color with him when he wants to.  They take him shopping with them and out to lunch.  He is 5th on a waiting list now for supported employment.  His psychiatrist and I think this is a great option right now as he prepares for regular employment (if he wants…but its his choice.)

Right now his days are filled which is exactly what I wanted for him.  And my heart is filled for him.  His world has opened and it’s his for the taking.  He arranges what he and his aides will do, he makes calls to schedule things and actually used the internet to find the local library’s address the other day so he could go there. I am so proud of him and glad that people listened to me with compassion for him.  That’s what we need more of.  I thank those people who made this possible.  I actually called and thanked the county social worker who I doubt gets much thanks for the hard decisions she has to make. But we thank her.

And every time I see the smile on my kid’s face after his aides are gone for the day, I thank her even more.