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, January 18, 2011

So much for trust

This has been a very hard week with some really good spots in it.  However, I'm struggling with a lot of decisions and uncertainty.  And I'm tired.  That's why the blog has been neglected; I've been sleeping.  Or not sleeping and crying, depending.

Essentially this is the last week:

Tuesday I wrote about breaking my glasses.  I didn't go into a lot of detail but I also had a tough time with Dr. Mind because against my will my memory kicked out a lot more information about why I get so upset with my face covered.  So I was dealing with that.

Wednesday I got a call on my way to the pharmacy from a program my health insurance is doing which has us fill out a questionnaire and then we get a discount on our plans.  They assist in increasing healthy lifestyles.  In my case they are able to provide asthma education.  I learned a lot just from the intake nurse and am looking forward to the actual training person.  So I finally felt fairly good about this whole thing when I picked up my inhaler.  I was glad to have it as I'd had a drippy nose that day and increased tightness.

Thursday I used the inhaler.  I was quite conservative.  I was also up all night manic.  I fell asleep at 3:30 AM after emailing Dr. Body crying at 2:00 AM because I felt like I had to choose between breathing and sleeping and I can't make that decision.  I asked him to try to help get me into the specialist sooner.

Friday was bad for work.  I had to drive a lot of extra miles because of timing issues.  Then I had to have all my documentation done before I could leave because of a computer upgrade.  So after only a few hours sleep I worked until 7:30 and then drove home.  I did sleep that night and even slept in Saturday.

Friday night I got home to an email that he had succeeded, although not the doctor who I'd been referred to and who had all my psych records, etc.  I couldn't confirm this until Monday morning though.  I was also cautioned about when to go to the ER over the weekend, etc.

Saturday was my birthday and per my request I spent it with my niece and sister and her husband. I got to see my genius niece sitting up all by herself, played with her, read to her and watched her love the book I got her.  And we went to a really good Mediterrean restaurant.

Monday I was able to get an appointment although with a different doctor.  And it was awful.  I can go on forever because I'm so upset but let's say that when a doctor asks "and what brings you here?" and then interrupts after the first sentence and refuses to listen to your story after that point, it's not good.  Pretty much bipolar stopped everything.  So, instead of doing what was needed desperately I was diagnosed with asthma but will not be treated until I do a test that I need more information on but which I don't think I can handle.  I have enough trouble with feeling my oxygen is being cut off because of PTSD.  This makes you feel like you are struggling to breathe for several hours.  I also don't see a real need.  They were sort of acting like Dr. Body was clueless if he couldn't diagnosis and treat simple asthma and would not let me talk about why this was not simple.  They have no clue that I was there to arrange back-up if and when I need steroids.  I am well aware this isn't that bad.  My pulmonary function test was at the low end of normal.  I am much less sick than 95% of their patients.  But I have a situation that is very unique.

In the meantime I'm left with almost no safe treatment options  and a tight wheezing chest.  I have an email out asking (for the first time I am willing to do this) at what point we use steroids, know that I will get myself to safety immediately when needed, and get this over with.  I don't like feeling like it's hard to breathe and I can't treat it.  And I'm just so very tired.  One of the things that made they not help me, I think, was that I can't be sure I'm waking during the night because I take so much sedation.  All signs point that way, I'm exhausted for no reason no matter how much I sleep, I am hoarse in the morning, I have more lung tightness/pain/pressure in the mornings, but unless I can say I'm waking 15 times it doesn't count.

The appointment yesterday was about as hopeless as I've felt in a really long time.  I cried all 9 floors down, all the way to my car, for a 15 mile drive, and then through emailing my doctors at Starbucks.  I do not ever cry in public.

I also learned I need my mother to have a POA as their solution to a crisis is go to the nearest ER and then request transfer to the big hospital.  Except that as soon as steroids are in my blood I won't be stable nor able to sign myself out.  And until my mother can do that for me I may have issues.  Yet I don't have time to see an attorney.  It's annoying.

I'm incredibly angry at the whole thing.  I feel like I've been through enough with this and I just want someone to HELP me.  Dr. Body has tried but it's beyond his safety zone and I respect that.  I don't know if he can even ethically start me on steroids.

My vote at this time is just do the stupid steroids and deal with it.  I know it's the best change at gaining control we've got and while I do not want to have to feel manic and suicidal, I also know that I am safe from myself and that I'd have a whole team looking carefully after me.

I am being a brat about this testing.  If my doctor says I need it I'll do it, but not until I've had a few weekends off.  Every time I take off work I have to work the weekend and I'm exhausted from this.

So I've been struggling and angry and frustrated and scared that this is never going to feel better.  It has been rough.  I do have half a post done about something B. said/asked, but that will get done when I have the ability to do it.  Right now I just physically struggle to do much of anything but sleep.

More soon...


Anonymous said...

Ok - something's gotta give. Sheesh! What a horrible time of it you've been having. One thing upon another, and then another.

Honestly? I am exhausted reading about it. So, think of it. I am not fighting the battle, yet hearing about it tires me. There's some perspective for you! NO WONDER you are struggling. I've no idea how the asthma is affecting your energy level. Seriously I would imagine. And then recovering from being sick. And then the UPS and downs of gearing up for the doctor/being failed by the doctor. Anyone would cry after all of that. ANd be tired. And weary.

So, something's gotta give. I am focusing my prayers for you on you "turning around the positive corner" here REAL soon!

I was very happy to hear that you got some joy on your birthday (in the form of your genius niece). What a proud auntie you are. Lucky little girl.

I am glad you wrote Jen. Hang in there will you? Sending you my thoughts and prayers.


Michal Ann said...

I'm right there with the well-expressed thoughts of B. I'm sure you're not getting the right oxygen..."low end of normal?" Maybe it's worse than that part of the time, like night time, so it doubles your fatigue.

I am praying for you with compassion and asking for a portion of hope and optimism as you face these extra challenges.

"Let the morning bring me word of Your unfailing love, for I have put my trust in You. Show me the way I should go, for to You I lift up my soul." Psalm 143:8

Julia Roberts said...

I am so, so sorry.

If there is one thing I know to be true about about is that you will find a way to the right person, the right answers, the right choice.

In fact, this fact about you is what always gave me the hope to know that I could do that to, for Gage.

Email me if I can help you navigate any of it! I don't know what I can do, but I will do anything to help you.

Love and healing to you...

WinnyNinny PooPoo said...

Bumming for you, moving backward through your posts to catch up.

I only have rare instances of asthma but the ins co insists on testing/and education. Have only had it for YEARS. Not needed.

Rachel said...

You may try Nin Jiom Pei Pa Koa (ninjiom-hk.cwahi.net). i know alot of people use it, its also non alcoholic, though it's effectiveness is not as good as alcohol based cough medicine, but it's still good to use on not so serious scratchy throat.

apprently ( according to the instruction) children from 2 to 12 can use it.