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

Tuesday, December 31, 2013

2013: The year I stopped wanting to die

That is my summary of 2013.  Six months of desperately wanting to die, 6 months of not wanting to die, while not necessarily wanting to live.  I am more at peace now with where and who I am and that is progress.  Progress is a good thing after 18 months of wanting nothing but to die.

Because maybe in a year I won't remember this, right now progress means that I am starting to tell people when I don't like how they are treating me.  I am actually doing fairly well doing this with Dr. Mind, although it has a week's delay because I have to think about it before I know if I'm right.  But I have done it a few times in recent months and since he's very confrontational of late I am getting lots of practice.  I've also done a little better with my family although that is much more difficult.  I also am starting to look at Dr. Mind more when talking to him.  We've progressed from trying to know what shirt he was wearing each visit (and not just his shoes) to eye contact a number of times in the 12/30/13 session.  Those things are big.  Recognizing that is big.

I can't end this without saying that there are lessons to be learned from Geraldine's illness and surgery but I don't know what all of those are yet.  I do know that a baby who has been through so much more than a baby should have to go through is the single happiest, most smiley baby I have ever known.  And not only does she smile at virtually everything, her smiles crinkle her whole face and light up a room.  She recognizes me now and to get a grin just for being in the room is incredible.  At the same time her sister is growing into a wonderfully loving and caring child who is always ready to help or to look out for someone else.  I am so proud to know her because at 3 years old she has already grasped what caring for other people is and why it is important.  I am sure that some of that is from the difficulties with her sister's health and that period of time that had to be so confusing to a little girl who had been promised a sister.  All the things related to infancy that she needed to know had been explained and discussed.  We left out what happens when your sister has a very, very rare tumor and has to have testing and surgery soon after birth.

In this next year I hope that my life is going to become routine.  It's been so long since that was true.  But soon I'll be living in my new home and at least until summer things should be fairly stable.  If Dr. Mind doesn't leave it's a year of no big changes that I can anticipate.  I'll probably have my ankle reconstruction surgery but not for a while.  Otherwise I think I will have a few months of stability and waiting for a new anti-psychotic that is possibly going to be released this year and is hopeful for me because it isn't related to any of the others.

For everyone, including myself, I wish with all my heart, peace.


Michal Ann said...

Powerful news and insights, Jen.

Your report about the girls is touching. Imagine their beautiful spirits which have grown in adversity. Priceless beyond words.

Hugs, Michal

Jean Grey said...

Have you tried Clozaril? I know a couple of people who did very well on it when nothing else had helped. Of course it is a pain to be on with lots of blood tests.

Just Me Jen said...

Clozaril is still our holdback med if Seroquel stops working. For now it works, just not well enough and my dose is really high. In theory I haven't really given Zyprexa a good try either although when we added it at 10 mgs from the start as a crisis med it did absolutely nothing and Dr. Brain hasn't felt it would help again.

I think that she is very hesitant to put me on Clozaril because my history of side effects, especially extra-pyramidal syndrome, is significant on antipsychotics in general. It is really hard to get me on something that doesn't require that kind of monitoring. And
Clozaril would have been really hard to deal with these last few years when I didn't have insurance as I'd have had to drive 2 hours each way for every blood draw.

But it is still an option, just one we hope to not have to deal with.