Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Sunday, January 08, 2012

Looking back

When I included that little story about Dr. Mind the other day I had totally forgotten that when I first blogged I kept it so removed from my life.  I had been blogging nearly 9 months when I said I was some kind of therapist.  I also didn't talk about what happened with my doctors, especially not in therapy because I was scared someone would stumble into that.  At the point that was written I hadn't even created nicknames.  I was trying to see when I did create nicknames when I found a posting marking 4 years of official diagnosis.  I am very aware that this year I will be at 10 years since diagnosis.  What I had forgotten was one of the ways to know how amazing my years of working were for me to have achieved that.  For someone who has never heard this story after realizing that I was more than likely bipolar and having this confirmed by a therapist who'd never actually treated someone with severe bipolar I wound up discovering that Case Western Reserve University has a mood disorder clinic that was headed by a man considered to be a world expert in bipolar (Dr. Calabrese).  Because of the severity of my symptoms they jumped me over the waiting list (they wanted to hospitalize me to start but back then Ohio did not have a mental health parity law and I had no insurance coverage for psychiatric hospitalizations and a $4000 deductible before they'd pay for any mental health treatment).  You had to have someone who could verify your symptoms so my so-called best friend (who in just a few months would be the so-called-friend-who-decided-bipolar-made-me-not-a-Christian) came with me.  Thankfully they had her sit kind of behind me and verify mainly with nods so I really never knew what she told them.  Hindsight says probably not the best choice of "friends" but it worked.

Anyway during these next months there is something I had forgotten that helps a little (at least right now it does).  That little thing is that I made it much further than I should have.  I had forgotten because I took working for granted and it is wonderful that I could do this.  So the Sept. 2006 story of Sept. 9, 2002.
The evaluation itself was exhausting. That's mainly what I remember, how tired my brain was at the end. He asked questions about everything in my entire life and how I did things, reacted to things, approached projects, etc. He walked back through my life year by year to find when I truly first had symptoms. He started predicting the patterns that identified the variations of bipolar that I had. That amazed me; he could ask "do you do this?" and then tell me that I also did this and this but not this.

At the end he did something that I have remembered a million times when I have been most frustrated. He asked me how I had done so well for so long. I had gone far beyond when I statistically should have been clearly diagnosable, and I had avoided pitfalls I was statistically extremely likely to land in. At that point it was amazing I had maintained a job for 2 years. What he didn't know was that I hadn't even missed a day of work due to bipolar symptoms yet and I wouldn't for another 5 months. That made me feel so good, like at least if I had to have this at least I wasn't totally handling it horribly.
Even with that comment in 2002 it wasn't until 2004 that I was on disability and that was simply 6 weeks for treatment of akasthesia and vision problems as a side effect of Abilify.  I made it to 2006 until my first real disability and even then worked 5 years after I went back.  It seems less horrible in these terms.  I did what I shouldn't have been able to.  The current changes stink but they could have come a lot sooner.

This is very weird.  Also in  Sept. 2006 I wrote:
 I seriously doubt that I'm going to be able to do this for a tremendously long time. I'm arbitrarily picking 5 years as a point that I hope I still will be working. 

And Aug. 6, 2011 seems to have been my last day (at a minimum for a very long time).  Self-fulling prophecy that I did not remember?  One very good guess?  Again I totally had forgotten that and in the last few years had come to believe that I could have a normal career.  Compared to how hard working used to be this was reasonable.  But bipolar is ugly and I forgot that just because I well for a long time that did not mean the future would stay that way.  All we could could do is hope and I suppose I took that further than was best for me.

This has been interesting.  I had actually forgotten that I felt a significant decline in 2006 and that I struggled for over a year to adjust to a decline in my functional skills along with having very few med choices left.  Sound familiar? I wrote this in 2007:
 This week is when I'm going to start my new psychological adventure. It is time, I believe, to begin to determine how to not put myself in the same position I did this last time. I made myself miserable for a long time by insisting on believing that "better" meant back to the way I was, the way I knew myself. Instead, when I finally gave up and accepted that I lost ground that was permanent, I was feeling better (in new ways) in a matter of weeks
I could have written that today.   The difference is what I was losing.  However, even some of the same issues I was dealing with then are still in place, mostly that there are 2 meds left that I haven't tried and am not allergic by default or are contraindicated with something else I take:  Zyprexa and Clozaril.

Here's another one from 2007.
I saw my therapist tonight. He was pretty happy with how I'm doing. I've actually come to an acceptance of my current limitations over the past few weeks, and that really is working. He told me this is one of the days he got a glimpse of what I would probably be like without this disease. That, of course, is very good. It turns out that not fighting how I feel is maybe even letting me feel better, because it wastes less energy. It also is encouraging me to take it slowly, which is simply not my usual style. I'm trying so hard to follow my body's lead this time, and it is just possible that if I had done this sooner like everyone encouraged I might have suffered a bit less
Somehow I don't think that conversation would happen again.  I think he got to know me without symptoms.  And now that is gone.  I was adjusting to my illness progressing at the time this was written but there was no way to know that 2 years from them I'd actually start feeling normal much of the time for nearly 2 years.  This time though I know that it was obvious to everyone else before it was to me that I needed to be off work indefinitely and my reaction to that was terrible as I tried to adjust to it and I have fought kicking and screaming against what was happening for months until I finally gave it and decided to try to live this way even though it's hard to consider.I think that now that the time I was being prepared for a few years ago happened for real everyone had started to think it was not going to happen and that I'd keep avoiding the end of who and what I wanted to be.  I am glad that I have been back through this though because it helps to know that this did not just happen, that it was a very long process and I now have a reminder that while I'm sad about the ending I made it nearly 11 years which is amazing.

I need to change my sheets.  I really hope I'm right and there's a clean set in the closet because I really don't want to have to do laundry tonight.  Tonight's wild plans include clean sheets, a shower, feeding my worms, a bit more watching a movie, gathering laundry to wash tomorrow and bed.  And this post is way too long.  So good night.


WinnyNinny PooPoo said...

Wow, wormies are still there?? WooHoo!!! I have lost track of most of 2011.

You have to give yourself credit for being an amazing person. Finishing your education and working at a challenging profession while also working around bipolar disorder and medication side effects was extraordinary. You gave your self a time estimate years ago, and were spot on - I wish I had that type of foresight.

Hope you found clean sheets!!

Michal Ann said...

Amazing post, Jen. Amazing woman. Awhile back I mentioned that you have Dr. Mind and your blog to help with remembering things. It's so great that you have such a complete record.

I'm sort of speechless at the moment as I begin to absorb what you've written.

I will ponder and pray and then crash. I gave a fifth pregnancy massage to the young woman who is now 8 days overdue. We also hiked to a waterfall, prayed as the sun set and sang hymns and old Young Life and campfire type songs. So much for cramming for tests...didn't happen.

First "clinic" tomorrow which means I may have my first strangers to massage at the student clinic.

You're one awesome lady, Jen!

p.s. I appreciate the way you put lots of little paragraphs in this post. It makes it much easier to read. B's really good at putting spaces in her comments. I like it.

Anonymous said...

Yes, AMAZING is the word! And not just for the years you were "normal", but for who and what you are that enabled you to triumph over this disease. AmaZinG!

Gosh, I sure didn't know my use of the word "normal" on a previous comment would trigger such a response in you. If any of that response is/was negative, I sincerely apologize. Truly I do because I never, never ever want to cause pain or bad feelings for you. I'd rather never to write again rather than take that risk Jen! So, you tell me, ok?

When I wrote that "n-word" I was thinking about how your life has been anything BUT normal since fall of 2010 - so that was my reference point; the last year+. Absolutely you don't want all that as normal, right? Gaaaa! As I have said many times... what you have endured the last year+ would be impossible for anyone, let alone someone with bipolar disease. Once again, that makes you AmaZinG!

It sounds like you are making good progress processing this whole change. Change is always difficult. Change is one thing we can all count on. I like the way you are working through it, and I thank you once more for sharing your journey.

I don't know if you will like this or not, but AmaZinG makes me think of Aerosmith, and when I looked up the lyrics, boy, they sure seemed applicable (I love lyrics!) Sooooo, here's some Aerosmith for you, AmAzinG Jen, because "I KNOW YOU'LL BE ALRIGHT!"


oh, and Good Morning, Jen! :-)

I kept the right ones out
And let the wrong ones in
Had an angel of mercy
To see me through all my sin
There were times in my life
When I was goin insane
Tryin' to walk through the pain

When I lost my grip
And I hit the floor
I thought I could leave
But I couldn't get out the door
I was so sick and tired
Of livin' a lie
I was wishin' that I would die

Its amazing
With the blink of an eye
I finally saw the light
Its amazing
That when the moment arrives
You know you'll be alright
Its amazing
And I'm sayin' a prayer
For the desperate hearts tonight

That one last shots a permanent vacation
And how high can you fly with broken wings
Lifes a journey not a destination
And I just can't tell just what tomorrow brings

You have to learn to crawl
Before you learn to walk
But I just couldn't listen
To all that rightous talk
I was out on the street
Tryin'a survive
Scratchen to stay alive

Its amazing
With the blink of an eye
I finally saw the light
Its amazing
That when the moment arrives
You know you'll be alright
Its amazing
And I'm sayin' a prayer
For the desperate hearts tonight

Michal Ann said...

Man oh man, Becky! What an amaZinGly appropriate song!