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

Monday, January 28, 2013

Lessons

This week has been truly tough.  I haven't slept, I'm exhausted, I've been struggling very hard with not liking what my role in life right now is, and my mood has just been everywhere.  I've written a ton and out poured many things I didn't realize I was battling.  Last week I cried a lot with Dr. Mind while we discussed how hard it is to be dependent on other people's generosity along with various government programs, and yet that it was even harder that I am so close to getting more help I really could use but am barely over the line and once you cross it no exceptions.  I make about $175/month too much to qualify for a number of programs.  It's really frustrating when I need financial help every single month.  I am embarrassed by the programs I do use though and that I wish for more assistance.  It is hard to accept that in a world where people are so fast to judge anyone who is helped by any program.  I've not learned to accept this gracefully and I've been helped along in this by all that I have to listen to about people like me who leech out of society.  That's not even true, for the most part I'm living on SSDI which is insurance that I paid into for all the years I worked, starting with my first job at age 14 when I probably paid in $.18.  But regardless it really upsets me.  And as it gets closer to June I am forced to see that my secret dream that I'd be so much better and would be starting to cram in all my continuing education isn't going to happen.  I cry whenever I say this, but in June my OT license goes into escrow.  In 2 more years my national certification will go into retired, good standing.  And the year after that my state license will retire.  I know that I cannot work as an OT anymore.  I used to think I could take on 1 or 2 patients per week, restrict my involvement to evaluations only, but the reality is that after some thought I realized I can't.  It's not in me to "just" evaluate.  If I evaluated I would also do a thorough medical assessment and I'd feel that I needed to follow-through on that like I should along with any OT needs, and it would snowball and I'd be overdoing it, again.  OT is kind of an addiction for me.  It's not safe.  And I know that is true because all my doctors, including the psychiatrist I see in the hospital, have told me so.  When this discussion ended last week Dr. Mind reminded me of the part of James where we are ordered to care for the widowed and orphaned.  Again.  And again I only thought rebellious thoughts and sobbed harder.

Last night I finally slept.  Whenever I'm mixed and don't sleep much for enough days I'll crash.  This time it took 3 or 4 weeks I think. I don't really remember.  I had a few nights that Neurontin helped but then it didn't and I want to talk to Dr. Brain about a few questions before the dose is increased.  (I know that 300 mg caused me major problems before.  I'll need sedation in the hospital.  I don't care if I can't walk well in the hospital but until then I can't go to 300 and I don't want to have the dose where the hospital increases to 600 mg because at that point I am plain old confused.

I'd hoped that meant I'd get more sleep tonight.  Sometimes that one night breaks the cycle at least a little.  Not so lucky.  But that led to my reading a blog and not realizing that time had passed and I should be reading a book.  And because I read that blog I finally got a little peace.  Not enough that Dr. Mind isn't going to hear a lot more about my expectations versus my life.  (I thought that if I didn't work I'd just live a more relaxed life.  Like weekends when I felt good, all the time.  That is not true.  My life is completely determined by my mood and medications and sleep.  I have things that are meaningful to me and that I matter at, but they aren't things I get a lot of.

Anyway, the blog is called Wrong in All the Right Ways.  I've actually read it before from the beginning as I am now because it is an amazing journey and the author is quite funny.  I find strength in reading it.  They are a family with 6 children.  Four are adopted.  One does not have special needs.  The next adopted child has no needs now but had to have major skull reconstruction when she was adopted.  The youngest 2 are both about 4, both adopted almost 2 years ago.  One of them, Francesca, has Apert syndrome.  This is a syndrome I actually had known a woman who had been born with it, but I had no idea what it was.  I knew her when I volunteered at a state facility for people with developmental disabilities back in college.  As soon as I saw a picture of the litte girl I knew she had the same disorder as that woman years ago.  It turns out that it was amazing she as alive since the disorder causes the skull to fuse var too young and without major surgeries the brain is compressed badly, which is obviously bad for your brain and is also painful.  If she had pain you'd never know.  I have a picture of her somewhere but I don't remember her name now.  The other little girl, Victoria, has arthrogryposis, which is a disease where joints are contracted (immobile) from birth.  I treated an infant with this during clinicals and  I remember how hard it as because his tight hips prevented so much movement.  His 16 year old mom had a lot to deal with handling therapies, splints, etc.  Both of the younger girls had been severely neglected and were extremely malnourished when they were adopted. In fact they went from the airport to the hospital for emergent treatment of Victoria's malnourishment.  Her condition was horrible because somehow she had been condemned to a "lying room" in the Ukrainian orphanage.  Essentially she was thrown in a crib with no stimulation and left there to die.  At first the parents though she was unable to move her jaw because she never had a facial expression.  Eventually she learned to smile, laugh, eat food and communicate.  Since they have been home both girls have had surgeries (multiple for each) and been in many, many casts.  And both are thriving.  Little Victoria who originally threw her arms over her face to hide it when people were around is possibly the most determined person on earth.  If they said she couldn't do it she has.  Not only does she walk she is now (after figuring it out for herself) managing to push herself up to stand, with enormous effort.  It's truly amazing.

But this time through their blog I noticed a post where the mother had been talking to an old friend who had rather seriously attacked her decision to adopt these children and the unfairness of it to her other children, that it was better to only have biological children because then you could give those children more.  I'd never read the comments on this page, but this time I did.  You can too.  http://wronginalltherightways-travcat.blogspot.com/2012/02/important-question-to-my-readers.html#comment-form  .  And while I read I learned about giving and receiving.  I'm not done being angry and I'm not done being shocked at what my limitations are at this point in time.  But I learned the real meaning of that verse from James that Dr. Mind keeps sharing and I keep pushing away.  So hile it's another night that I'm clearly not getting sleepy, and while tomorrow will be completely exhausting as I have to get a lithium level done after counseling an hour away from there then drive 2 hours home with a stop for water and milk at the only place that carries the brand of water I prefer (and can afford, it's way cheaper and tastes way better, and when you buy 14 gallons of water ever 2 weeks or so that matters a lot).

I am going to read a go to sleep book now and hopefully I'll get to sleep before too long but I'm so thankful for the peace and understanding I found with this.  I love the internet.


2 comments:

Dani's Insanity said...

Mania is rough :(

Just Me Jen said...

Yes it is and mixed is even worse. I'd forgotten in my few month break of only depression or only a bit manic how much I hate it.