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

Thursday, February 03, 2011

This could be easier

My doctor's response to my relief at the diagnosis was, I think, surprise.  I think he expected me to be upset, but I've had a long time to resign myself to this.  Plus the person who did the test was pretty honest that she was pretty sure from the start.  I made it a reasonable way into the test but with each dose of medication you took 5 breaths of it and then with another device you  breathe out and it measures how much comes out versus in, how quickly you breathe out, and then it stops if you cough.  You have to get a certain percentage of your baseline (before the med that makes it harder to breathe) twice to pass that level.  I think you have 5 tries to do so.  There were several that I kept almost failing.  I'd do ok on the first breath and then fail the next ones and pass on the last.  I finally said that I was really feeling it and she said that would probably be it and I barely, barely passed.  The next one she said she was pretty sure I'd be done.  And done I was; I couldn't even start to breathe out without coughing and wheezing.  By that point in the test I'd been coughing heavily for 2 hours and knew I wasn't getting stellar scores on anything, just passing.  So I was 100% sure early in the test that I would not be passing it. Not that anyone expected me to anyway.  I'm just glad to not have passed this test leaving us clueless.

Unfortunately I have been awake ALL DAY.  And I barely slept last night because I was scared.  I took a big dose of Seroquel, but even that should be working now and it's not.  I think we need a different rescue inhaler since the only difference all day was that I'd had it (and more Klonopin than usual trying to sleep) and the last time I used it I was up all night.  So in about 30 minutes I'll be emailing poor Dr. Body.  Again.  Favorite patient and all that.  So I'm tired.

But partly that's my little breakdown today.  I don't think I've written about this but last week I started reading more about asthma trying to find out more about this test I had, which is hard to find information on.  One of the things that hit home was that people who are really sick with asthma often don't eat, don't have an appetite and don't have the energy to prepare meals.  Which made me realize that I had not cooked since October.  I mean as in I had not made scrambled eggs, spaghetti, a hamburger, anything.  I had barely eaten microwave meals.  I think I've been living on cereal bars and peanut butter.  So I went to the grocery for the first time in about 5 months (I usually go only every 1-2 months and was due when I got sick) and got a bunch of stuff I remember Dr. Body suggesting years ago when I was too sick to eat healthily.  And I've cooked a few times this week, easy stuff but still I've had meat and vegetables or nuked something.  Today I did not eat much.  Probably mania as much as anything, but not good.  But that led to me realizing even more how little LIFE I've had in these months.  I've struggled to work, had to work most weekends b/c of taking days off during the week, worked at home on notes b/c I'm not thinking fast enough to do them with pts., and the past few weeks have been studying as well.  I have not even opened my sewing machine box since Christmas.  Which is really sad.

So I'm ready to do whatever it takes.  I'm working on some legal papers to take away my greatest fear:  That I will have an asthma attack one day requiring an ER trip, they'll give steroids which they'll have to, I'll flip out and won't be able to sign myself out to get to a preferred psych unit.  So I'm doing a durable power of attorney, a mental health living will, and that should give others the power to get me to safety.  I'm also doing a plain living will, using a thing called "Five Wishes" I strongly recommend.  It's very clear and gentle and precise and not legalize.  If you are in Ohio and like 7 other states you have to do an additional document, but it's an EXCELLENT living will.  I think I got them (my mother and I) for maybe $5 apiece that goes to the organization.  Do a search.  They're awesome.  Less so in Ohio but we're already going to a notary so who cares.

And after my evening meds I CAN breathe.  Which is so nice and hopefully breathing all night will make up for the little issue of stimulants.

I am slightly sleepy so that's a good thing.

Hopefully now that I've taken a good look at my life (and maybe will be feeling better) I'll be back to writing daily again.  I miss the blog.    And I still have several drafts to post eventually, plus what I've been doing instead of writing this week.


Anonymous said...

Good morning Jen,

You said that you barely slept because you were scared – was there a reason to be afraid, or just one of those panic / afraid times? Hopefully you slept better last night and breathed easier too. I bet you will be amazed at how much better you feel when your body gets the oxygen it needs.

If I remember right, didn’t you used to make a lot of soup, and then freeze it for meals? Maybe that would be a good thing to do (?) I find that making soup is kind of therapeutic for some reason. Especially in the winter. And healthy too. Just throwing that out there for you.

You are wise indeed to make a plan for your “greatest fear asthma ER trip”. Hopefully you will never, ever need to use it but I think good to plan ahead – there’s comfort in that. Like I said, you are a wise woman to “take care of business” so you can relax a little about it!

“How little life” you’ve had… I can see what you mean for sure. It’s good to recognize that, but also please realize how much you’ve accomplished too! I mean sheesh – you were sick, sick, sick and still continued to work, keep up with your doctor visits, do Christmas, etc. all while not breathing well, and not getting enough oxygen or proper nutrition. This is what I find amazing about you – you just don’t give up. SOOOOO – now things WILL be better! Just being able to breathe will help immensely! You are on the healing track girl and I see huge improvements coming your way.

As always, you are in my thoughts and in my prayers. Seriously you ARE. Easy to write these words, but I want you to know that it’s a fact.

Have a good day – it’s sunny here and that sure helps.


Michal Ann said...

I love B's letter. I'm with her...and you!